Nanlyn Wray - 07/17/98 23:10:46
My Email:wratkins@hotmail

Comments:
This is my story. I'm a 48 year old mother of two boys, husband of 25 years. On May 1, l997 I was diagnosed with HCL, whereupon I began the journey you all have taken, doctors, drugs, knowledge, lack of knowledge, love and advice from friends, chemotherapy, and then, the piece of paper that says, "no evidence of HCL". But the funny parts of this are, pronouncing "hairy" very carefully for people who think you're saying, "hoari" which is actually a Japanese art form of something. "Oh yes, Hairy", as if they'd ever heard of HCL. Also, I told people I went to a HCL support group but no one was there, just a chair for me. "Yes, I'm one of 80 plus women in America each year to get HCL" as if I just accomplished some kind of distinction. "We always knew you were special Nanlyn. Let's take you to Vegas." All this politely masks the uncomfortableness of being around you and your disease. I can't get over being in such a tiny group of fellow sufferers. "May all your hairy cells go bald" is the perfect motto, and Eugene Farrell of our research foundation was so helpful and reasuring on the phone. But I can't help but be envious of all those other sexy cancers, like breast and prostate, getting all the press. How do we make noise? Has anyone written an account for the press? Was our 2cda vaguely related to AIDS research? If so, let's thank all those men who died for us. When I was diagnosed my doctor, who appeared to be 12 years old to me probably due to my anxiety state, said treatment was perhaps months away. The second opinion doctor said to treat now, whereupon the first doctor said, "Yeah, treat now." Whereupon my hub and I quickly flew to San Diego for the day. For the beach? No, to see Dr. Saven who booked me an appt. 2 days after my phone call. Somebody got this guy from Central Casting to play the part of the expert. He really is, on paper, an HCL expert. But he also speaks with brash mastery of all things, upbraiding the assisting physician brusquely, "Here, don't you feel the enlarged spleen? Here. Try it again!" He told me I'd live to be an old lady and die of something else, that my HCL was caught quickly. My hub and I went and hugged at the beach, just like in real life. But I didn't believe Dr. Saven, because I tend not to believe anyone. My mother died at age 41 of colon cancer, when I was three. She was buried on my birthday; when people die the survivors don't remember details. Her sister had colon cancer in her 40s a lived another 20 years. Cancer gallops in my genes, but I also am proximate to oil refineries, have used gallons of Watco and Jasco, and hey, have experienced stress. I generally don't care for mind-body connection, prefering to go with fatalism, as one with the imprint of cancer death since age three. But having cancer is definitely a brain game and in the last year I have taken up better habits, like getting away from negative situations, consciously having fun, and taking it easy. But like all of you, when I get tired I wonder if my blood is going bad. It would be nice to have some instant reassurance-o-meter, like an early pregnancy test. It is a brain game. My CD 4 , T cell count is climbing slowly, now at 320. I had hoped for normalcy by last January. Being an overachieving leader type, I read the literature and pegged myself for 1000 by January. I'm an elementary school librarian with 400 kids a week. If I can stay healthy so can you. Watch out for tuberculosis. My Dr. says it can take 3-4 yrs. for an immune system to recover. Maybe we could compare what our Doctors tell us; for example, Dr. Saven thought HCL was slightly more prevalent among Jews, but I haven't read that anywhere else. Dr. Saven at Scripps did another diagnosis with my slides; total cost at Scripps was $900.00. I advise everyone to get a second diagnosis, for peace of mind. My best HCL moment came with the second bone marrow, needle in, Dr. says, "Does it hurt?" Nothing would come out of my mouth, so in pain was I. Finally, a very weak, "yeees", then the nurse said, "That's good. It means he's getting it." Soon, it's all over and your blood and bone is in a big petri dish. Does having HCL hurt? Yes. Compared to other cancers? No. Are we going to all live a long time? Yes, of course we are. That is my story. Write back, anyone. Nanlyn Wray

Nanlyn Wray - 07/17/98 23:04:21
My Email:wratkins@hotmail

Comments:
This is my story. I'm a 48 year old mother of two boys, husband of 25 years. On May 1, l997 I was diagnosed with HCL, whereupon I began the journey you all have taken, doctors, drugs, knowledge, lack of knowledge, love and advice from friends, chemoth rapy, and then, the piece of paper that says, "no evidence of HCL". But the funny parts of this are, pronouncing "hairy" very carefully for people who think you're saying, "hoari" which is actually a Japanese art form of something. "Oh yes, Hairy", as if they'd ever heard of HCL. Also, I told people I went to a HCL support group but no one was there, just a chair for me. "Yes, I'm one of 80 plus women in America each year to get HCL" as i I just accomplished some kind of distinction. "We always knew you were special Nanlyn. Let's take you to Vegas." All this politely masks the uncomfortableness of being around you and your disease. I can't get over being in such a tiny group of fellow sufferers. "May all your hairy cells go bald" is the perfect motto, and Eugene Farrell of our research foundation was so helpful and reasuring on the phone. But I can't help but be envious of all those other sexy cancers, like breast and prostate, getti g all the press. How do we make noise? Has anyone written an account for the press? Was our 2cda vaguely related to AIDS research? If so, let's thank all those men who died for us. When I was diagnosed my doctor, who appeared to be 12 years old to me probably due to my anxiety state, said treatment was perhaps months away. The second opinion doctor said to treat now, whereupon the first doctor said, "Yeah, treat now." Whereu on my hub and I quickly flew to San Diego for the day. For the beach? No, to see Dr. Saven who booked me an appt. 2 days after my phone call. Somebody got this guy from Central Casting to play the part of the expert. He really is, on paper, an HCL ex ert. But he also speaks with brash mastery of all things, upbraiding the assisting physician brusquely, "Here, don't you feel the enlarged spleen? Here. Try it again!" He told me I'd live to be an old lady and die of something else, that my HCL was c ught quickly. My hub and I went and hugged at the beach, just like in real life. But I didn't believe Dr. Saven, because I tend not to believe anyone. My mother died at age 41 of colon cancer, when I was three. She was buried on my birthday; when people die the survivors don't remember details. Her sister had colon cancer in h r 40s a lived another 20 years. Cancer gallops in my genes, but I also am proximate to oil refineries, have used gallons of Watco and Jasco, and hey, have experienced stress. I generally don't care for mind-body connection, prefering to go with fatalism as one with the imprint of cancer death since age three. But having cancer is definitely a brain game and in the last year I have taken up better habits, like getting away from negative situations, consciously having fun, and taking it easy. But like all of you, when I get tired I wonder if my blood is going b d. It would be nice to have some instant reassurance-o-meter, like an early pregnancy test. It is a brain game. My CD 4 , T cell count is climbing slowly, now at 320. I had hoped for normalcy by last January. Being an overachieving leader type, I read the literature and pegged myself for 1000 by January. I'm an elementary school librarian with 400 kids a wee . If I can stay healthy so can you. Watch out for tuberculosis. My Dr. says it can take 3-4 yrs. for an immune system to recover. Maybe we could compare what our Doctors tell us; for example, Dr. Saven thought HCL was slightly more prevalent among Jews, but I haven't read that anywhere else. Dr. Saven at Scripps did another diagnosis with my slides; total cost at Scripps was $900.00. I advise everyone to get a second diagnosis, for peace of mind. My best HCL moment came with the second bone marrow, needle in, Dr. says, "Does it hurt?" Nothing would come out of my mouth, so in pain was I. Finally, a very weak, "yeees", then the nurse said, "That's good. It means he's getting it." Soon, it' all over and your blood and bone is in a big petri dish. Does having HCL hurt? Yes. Compared to other cancers? No. Are we going to all live a long time? Yes, of course we are. That is my story. Write back, anyone. Nanlyn Wray

Garret & Daniel - 07/16/98 19:20:24

Comments:
One night we were having sex and it felt sexy we were going ah ah ah woooooooh but then we pped on them and are dick was inthem but it came out pretty quick.

Sex & aid girls - 07/16/98 19:14:53

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Sexy girls - 07/16/98 19:14:12

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Us - 07/16/98 19:11:48

Comments:
On Sunday we were out on a date with our boy friends and they felt our breasts and later they figured out we had breast cancer.

- 07/16/98 03:13:05

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Mark King - 07/14/98 03:46:32
My Email:markking@gridusa.net

Comments:
Hi every one. I have talked to the people at the scripps clinic in Cal. and it looks like the thing to do for a recurence of hairy cell is 7 more days of 2cda. I am trying to get my counts up on my own by taking alot of "health food store stuff" like Echi acea, Grape seed extract, mushroom extract, Astragalus, sheep sorrel, scudders alterative, shark liver oil,lymph-spleen complex and vitamin c powder. 2 weeks ago my hemoglobin was 12,wbc was 3.1 and platelets were 106. Now hgb is 16 wbc is 3.1, but platel ts have dropped to 91. My doc. was so pleased with the hgb she said "what are you doing?" I said "well I could tell you but then I'd have to kill you." I have actually felt great and have refused to be sick. My wife and I are going on a cruise Aug. 1 so t ey're not sticking me with anything until we get back. My platelet counts concern me some, so if any of you have suggestion let me know. In the mean time, I'm playing in a golf tournament at the Governors Club in Chapel Hill NC this weekend. Wish me luck. Mark

Mark King - 07/14/98 03:03:59
My Email:markking@gridusa.net

Comments:


Chuck Breiten - 07/07/98 05:04:21
My Email:,jbreiten2frazmtn.com

Comments:
I was diagnosed with hcl in March 91.my spleen was 100% hairy cells, my bone marrow was 95% hairy cells.my hb was .5 my platlets were only 13,000 my hct was 10 or 12. They removed my speeln which gave me almost immediate improvement in my blood count.I wa then given Interferon 2a for one year. three months everyday,nine months three times a week.results were okay blood counts remained normal.Four months later I was put back on Interferon 2b, three times a week. One more year of Interferon treatment. Resu ts were not good,was taken off Interferon. Six more months passed before my blood counts were low enough to warrant more treatment.Then Pentostatin was FDA approved.I was then given 12 doses of Pentostatin at a cost of $1800 per dose over a six month peri d.I am happy to report that I have a complete remission with no sign of hcl in my bone marrow for the past four and half years,and I have been told the longer the remission the greater the chance of a long lasting remission,possibly eight to tweleve years or more.To those just starting to deal with hcl,there is hope and hang in there , odds are things will be better.

Brian Coughlin - 07/02/98 01:51:39
My Email:wilhelmk@iconnect.net

Comments:
Hi, everyone. I'm a 29 year old male, and I was diagnosed with HCL on June 19, 1998--a little less than 2 weeks ago, and one day before my wedding. (Talk about a strange wedding present!) I'd like to ask: are there any other people with HCL who also h ve numerous allergies? For the past 10 years, I'd been very prone to infections; it was rare for me to get a cold *without* getting bronchitis, sinusitis, ear infections, etc. on the tail of it. About 3 months ago, I went in to an allergist to see if I'd been harboring any all rgies (which could explain my susceptibility to infections, perhaps), and found that the food allergy "prick test" yielded 33 positive results for food allergies (not to mention strong allergies to dust mites, mold, and cockroaches!)! This seemed to be o r solution; once I eliminated these foods, my health seemed to improve dramatically. I mention all this because of the following musings: my HCL diagnosis came within 2 months of my food allergy diagnosis; allergies and HCL both play games with my immune system (perhaps not in the same way... I'm not sure); and both syndromes involve fre uent viral/bacterial infections. Is it possible that the two are related? Time will tell, I suppose. I'm less than a day away from ending my 7-day course of 2-CdA (thank God!), and I consider myself blessed that my road has been relatively mild. The disease itself caused me no pain; it enlarged my spleen enough to poke under my front left ribcage (6-7 t mes normal size)--which was how I came to go to the doctor's in the first place (I'd initially thought that I'd blocked up my colon with some sort of allergic reaction!). The 2-CdA has had some side effects, and I've spent a bit of time immersed in self- ity about it (mild fever, some nausea, loss of appetite). I feel rather ashamed of myself now, given the heroic and extreme cases that I've read here. God bless you and speed your recovery, all! Please feel free to e-mail me questions... just don't expect lightning responses--my new wife and I are still trying to squeeze a mini-honeymoon in here, somewhere! ;) -Brian Coughlin (if this address doesn't work, try: paladinan@rocketmail.com)

mark king - 06/29/98 22:27:25
My Email:markking@gridusa.net

Comments:
Hi im a 35 year old first diagnosed in oct. of 95.I live in gastonia n.c. I was treated with 2cda for 7 straight days. I just found out that the hairy cells are back and am exploring my options for a second treatment. Of course I am aware of 2cda again. I interested in contacting " the man " or women dr. who really understands this thing. If any of you have any comments or can help in any way please email me at markking@gridusa.net. When i find the time I want to form a questionaire for hairy cell patient to see if there are any similarities in our backgrounds. Thanks Mark "the author" for your journal. I spoke to your wife while your were on your goif trip. Please respond or call 704-865-9814.

Kara Townsend - 06/27/98 06:24:11
My URL:http://www.dynamicSex.com
My Email:dwebmistress@yahoo.com

Comments:
Hi! I saw your site and thought it was great. I know how difficult it is to keep a quality site. Good Job! Let me know if you want to exchange links :)

Norman Tessell - 06/26/98 12:05:12
My Email:normant@worldnet.att.net

Comments:
The members of the leukemia society of america TEAM IN TRAINING completed a weekend of activities during June 20-21 by running marathons in either San Diego (The Rock n Roll Marathon) or Anchorage Alaska. I was a member of the group of 6,000 who enjoyed he excitement of Southern California on a warm but beautiful day for the long run.I have HCL but my numbers are still ok and I felt good enough to train and run. Mind you , I'm not an elite runner, but I do finish the race, get the medal, certificate of c mpletion, yada, yada. To make that race better, the members of TNT who went to San Diegop raised $15,000,000 making it the largest sporting event related fundraiser in history. When added to the monies raised by the Alaska marathoning group who ran the 2 .2 miles on Saturday, a total of $22 mil was collected. My next marathon will probably be the one in New York. I accept donations for the leukemia society of america TEAM IN TRAINING at P.O. Box 85 Newtown, PA 18940.

mark - 06/17/98 13:52:08
My Email:the author

Comments:
thanks for all those great entries! I'm doing fine myself, planning a fossil hunting/geology/dinosaur trip to South Dakota and Wyoming

Rob MacNichol - 05/30/98 15:00:41
My Email:mac5@home.com

Comments:
Rob’s continuing HCL Adventure! ----------------------------------------------------------------------------------------------------------------------I was so fascinated by story of the Israeli Army Chief of Staff going to Scripps, I decided to go to that Dr. myself! I figured if someo e comes to Scripps all the way from Israel, this Dr. must be good.------------------------------------------------------------------------------------------------------ I walked in to see Dr. Savin (British accent) and a swaggering confidence I found in t e attitude of Dr. Douer (Israeli) at the Norris Cancer Center, which I’ve mentioned in my last update. I was pretty bummed out when I last saw my previous Dr. because my counts had dropped and I did not think they were where they should be. Answers seem d short of comforting, so WHAM! I now have Dr. Savin, at the Scripps Clinic in San Diego. I am also in his data base of four hundred + HCL patients.-----------------------------------------------------------------I was pretty upset, to say the least, an decided I better start making out my last will and testament … I said I was BUMMED OUT ! Anyway, this Dr. and a resident Fellow, wanting to specialize in HCL, came into the room and started telling me all about HCL like I never had heard of it before. hey basically "laughed" me out of the room at the end of the little session saying, "look at your body, and look at mine." (Dr. Savin’s). I told them I was working out 2-4 days a week in the gym 30 minutes-1 hour (for two days), and running 4-5 miles th ee time/week. They looked at my counts and said "HEY! THEY ARE THE SAME! A LITTLE LOWER, OR HIGHER D O E S N O T M A T T E R! (DUH!!!). Dr. Savin said three blood tests in the same day will yield three different counts.--------------------------------- ------------------------------------------He further said that you have two of everything (i. e. eyes, arms, legs, kidneys … and more than enough bone marrow, and blood to survive quite well on what your counts are right now, and even much less. He also aid that whether or not the HCL is all gone, or partially gone does not matter, it’s the counts that show you are healthy. Even if I had lots of HCL right now, they would not treat it until the counts drop to a certain level … THEREFORE, GO HOME, ENJOY Y UR LIFE AND DON’T COME BACK HERE FOR THREE MONTHS! GET IT??----------------------------------------------------------------------------------------------------------------------- WELL I GOT IT!. He continued …… "This disease, " said he, "can be `milked’ or decades. There is 2CDA (which can be used repeatedly), there’s pentostaten, interferon, the spleen-thing, which we don’t really have to think about. You will die of something else, not HCL. On the down side there is a slightly higher risk of seconda y cancers over the general population, which is not an accurate statement, because the GENERAL POPULATION DOES NOT HAVE HCL! However, the upside is that you will be checked for the rest of a very long life every 3-6 months and any cancer will be caught ve y early on, which puts you ahead of the general population (who are walking around with cancers they don’t even know they have … yet). Just do the once a year physicals like anyone else concerning this.---------------------------------------------------- ----------------As for counts ‘topping out" after 3-6 months? They are finding that counts can continue to raise up to one year after treatment. They do not get lower each time one is treated. Zero HCL in the bone marrow, is not really "zero." If Dr.’ look hard they’ll always see "some" HCL out there. Whether or not this is a cure … they do not know. Dr. Savin’s longest patient, in remission, is 12 years. People with low WBC’s are expected to be prone to infection, YET THIS IS NOT WHAT THEY ARE FIN ING. I inferred from this that WBC’s are not all there is to the immune system … there is perhaps a redundancy built in?-------------------------------------------------------------I did not ask him all about the details of what I have heard, read, or to xplain all that he mentioned further. I was so pumped up by this guy, and knowing I was talking to the preeminent expert on HCL (in the world), that I asked stupid things like what was the name of the Army Chief of Staff from Israel (duh?) and he was tel ing me that on that guy’s last day in the hospital, he got a fever, and passed out! Dr. Savin was on call and thought to himself, ` Jesus Christ if this guy dies the Mousad[?] will have me assassinated!.’ Apparently, the politicians in Israel were deba ing whether or not a guy with HCL could be in the position of Chief of Staff. He described the scene where there were body guards, and agents all over the place. Well, this proves HCL is not a dull situation.--------------------------------------------- --------------------------------He personally believes HCL is a lot more common than only 600 per year. He thinks better detection of it will bring up the numbers and in the past people were (and still are) walking around with it not knowing, and the dia nosis is still slow in coming because of the rarity of it.---------I asked if there is anything on the horizon that is new in the treatment. He said there are new approaches to fight lymphomas, that may very well lead to new and even better treatments fo HCL. However, HCL is so rare that most researchers are not interested in it, like he is. This makes a treatment like 2CDA all the more unusual because most RARE diseases do not have ready answers such as 2CDA that do so well.--------------------------- -------------------------------------The only question I have right now is HOW did Steve Fikar get his input so neatly into the posting without it getting all bunched up?

Steve Fikar - 05/30/98 13:15:26
My Email:sfikar@aol.com

Comments:

Comments:
Got remission! Goin back to work 5/29! I feel betterthan I have in the last 2 years. I had 8 chemo treatments, with nipent,or pentostatin. Bone marrow is clear, blood is clear. Good luck everyone!

mark, the author - 05/27/98 13:26:35
My Email:marktaub@webtv

Comments:
This is for Nancy Atkins: your email address you gave me doesn't work. Please write

- 05/15/98 16:59:07

Comments:
xx
xx

Sally - 05/12/98 17:24:48
My Email:craignsally@nidlink.com

Comments:
My husband has had 2 bone marrow tests and they can not find the hairy cell leukemia. His white blood cell count continues to be low (5 months now) and his platelets remain around 120-135. He feel great, just summited Mount Hood near Portland last weeke d. The not knowing is killing us.

jhunter - 05/07/98 13:58:17

Comments:
I was diagnosed in October of 1987. I was 48 years old at the time. I took interferon for five years, had one bout with Nipent and have had one treatment (February 1997) with 2CDa. My counts are all good except for the white count. It rarely goes over 3.6 (normal being 4.0), however, am considered doing really well. I work every day, play golf with my husband, ride my bike and am very optimistic about my future. I believe in God and believe that all things happen for a reason and I try very hard to k ep a positive attitude at all times. One thing is certain--whenever I feel "bad", I become concerned about whether the leukemia is taking over again. It's hard to get beyond that. It's always there in the back of my mind that I am not 'TOTALLY' out of he woods, but this is going on my eleventh year with this and I have much to be thankful for. Great support from family and husband!! Friends, also!! Thanks for your diary. I'm sure it is bringing hope to all of us afflicted with this disease. God bless ALL of you during your bout with leukemia.

- 05/03/98 13:53:24

Comments:


Kathy Minnis - 05/03/98 01:22:50
My Email:minnisk@aol.com

Comments:
I found your site searching on leukemia - my son had Acute Lymphocytic - was diagnosed at 19 months - now is 7 and doing well. I had leukemia on my mind today as I read email from someone with lymphoma had sent me something. I relived my son's diagnosis through your pages - I never thought I would go through it again. It is something that never leaves you...always in the back of my mind. For those who have found the site through the search of information: Live everyday to its fullest Tell your kids/family you love them Reach out to help Life can end when you least expect it Don't sweat the little things Read - "I want to grow up, I want to grow hair and I wan to go to Boise" by Erma Bombeck - then pass it on to another friend. Give to the American Cancer Society and the Leukemia Society - that is why we are where we are. In 1970 20% of kids lived. In 1992 my son was diagnosed and was given an 80% chance - so far Matthew has beaten the odds and is at 100% Have hope Wish on a shooting star Pray Help the person next to you. You will never understand this until you have gone through it. thanks for the website!

Sandy - 04/26/98 01:31:54
My Email:Sassaroo@webtv.net

Comments:
I'm new to the internet, but not to HCL. I am a 53 year old female diagnosed in 1990. 2cda was in experimentation at that time. I received Interferon for three years and have been in remission for 5 years. It is really good to know there is something out there when needed, and how wonderful to have this forum to turn to. So many of my questions have been answered here or in the diary. I would be so happy to correspond with anyone who would like.(I'm quite a talker)

Mort - 04/23/98 14:50:07
My Email:jmascitti@aol.com

Comments:
Hi: It all started for me on March 4, 1998 when I had severe neck and shoulder pain. It hurt so bad that I had my mother-in-law take me to the ER on a Friday evening.(My wife had broken her leg on an ice fall on Super Bowl Sunday.) The pain was unbearable and the ER doc told me that I had a sever muscle strain in my neck. WHY? was my question? I hadn't been very athletic other than shovling a little white stuff periodically. Anyway, he sent me home with Vicodin and another muscle relaxer and it got a bit better. By Sunday-two days later, my pain had moved from my neck to my chest. I thought that the pain was from being kinked over from the neck pain. On Saturday night I thought I was having a heart attack. I called the ER and the on call Doctor was rude as he as awaked from his sleep. he told my wife that it was probably psychological and that I should hang in there. On Monday and Tuesday of that next week, I felt lousy. Probably as bad as I've ever felt. I noticed that my stools were dark-almost black. Being ignorant to an internal bleed, I assumed that the pain medicine over the weekend had caused this discolorat on. WRONG! On Wednesday I worked in Milwaukee and some employees-my job is to direct the retail operations for a consumer electronic/furniture company-commented about how pale I looked, etc. I drove the 60 miles back to Madison and went to bed. On Thursday, I felt worse. I called my Doctor and asked if I could be seen that afternoon. I couldn't even walk the hundred yards to my office from my car without being out of breath. As soon I saw him, he asked many questions and gave me a complete physical. He felt my belly and indicated that there was a problem. He also found blood in my stools and told me that I had to be in the hospital immediately. When I arrived at the hospital the original diagnosis was potential ulcer, although my doc was real concerned about the hardness in the left side of my belly. I was given 4 units of blood that evening as my HCT had dropped to 24. They did an EKG, CAT scan, and lots of other x-rays. The pain was horrible and I was real scared. My wife, doctor and I now thought it was lymphoma. In the morning, I was greeted by Dr. Peter Beatty. Peter informed me that I was lucky and unlucky. Unlucky because I had a rare disease called "hairy cell leukemia", but in the same sentence told me how lucky I was because of the new drug 2CDA which wou d almost for sure put me into remission. He scheduled a biopsy and subsequent treatment for the following Wednedsay, March 11, 1998. I was released from the hospital on Saturday evening. The PIC line and chemo set up went OK. It was done in the clinic. I went home to take my juice for a week. Two days into the chemo-the next Friday. I went ballistic with writing pain in my spleen. There were sharp stabbing pains every few seconds. I called the doc and they told me to take two vicodins. I did and two hours later the pain was worse. I called again and this time my wife told the Dr. office that we were on the way to the hospital. This just wasn't normal. When we arrived I was admitted immediately to the same wing, same bed as last week. They put me on a morphene drip and it took two hours for the pain to stop. Dr. Beatty arrived and told me that he thought my spleen was the sixe of a basketball and that he chemo was working well. The pain, he thought was a result of the spleen reducing in size and hitting the pertineium . Over the next week the morphene continued and I saw a surgeon that was considering removing my spleen due to the complication. Her and Doc Beatty decided that it would be a very difficult operation due to all of the bleeding I was having and the size. By the way the bleeding I refered to earlier was caused by a verices in the stomach. Back pressure was created by the spenic vein and caused the stomach to bleed. I ahd two bouts of this and ultimately had seven transfusions while in the hospital. My second stay was 13 days. I have been out of the hospital about 4 weeks now and can say that I feel great. My energy is coming back and I am very positive. My counts are still very low and that concerns me, however many of YOU have said that you had low counts for awhile. I will continue to watch them closely and pray. Please write with comments or questions. I'd be happy to share any more deatils that any of you might want. I may want to do the same. God bless.MORT

Mort - 04/21/98 19:06:59
My Email:jmascitti@aol.com

Comments:
I was diagnosed on March 6th. FInished 2cda about 1 month ago. When do most HCL paitents see their white counts rise? How about red cell? Does it go back to normal? How long? What percent of hairy cells do most paitents live with? 0? any? Just wond ring?

Rob - 04/20/98 23:01:50
My Email:mac5@home.com

Comments:
Follow up to Rob's HCL adventure. ----- I'm sounding flippant here, but believe me I have had my bouts of anxiety, and hypochondria. When I feel great the world is wonderful, when I hear about someone like Linda McCarthy dying of cancer it bums me out. If I get a wart or mole I'm off to see the dermatologist. ----------------------------------------------------------------------------------------------------------- The truth of the matter is, I'm back in the gym, running a couple of miles a day building up to three (my standard). I have a lot of energy, I just turned 50, I do more than many half my age, I eat well, have a terrific appetite, I am my old lean-mean se f, and feel great. Two of my blood counts are well into the normal range, the Hemo (my dr. looks at hemo instead of the RBC - he says it's a better indication of what the RBC is doing) is almost in the normal range … and I'm scared stiff (When it occurs o me that I have CANCER). ----------------------------------------------------------------------------------------------------------- I think the fear, anxiety, and hypochondria are normal. I guess the 2cda worked. My Dr. told me that sometime people must come back for a second treatment. So either way, once or twice is normal. To be honest, I think that even if I'm cleared of HCL, 'd like to do another treatment! (Please remember that my experience with the treatment was a NON EVENT). I hardly knew I'd had the treatment. I was energetic from the start. In fact, I was so energetic I think I rushed off to the gym much too soon, a d the workouts caused my blood counts to drop (which started me on the road to fear and despair). ------------------------------------------------------------------------------------------------------------ My Dr. does not think the workouts did it (then what DID?), but how do I know? I do not. Anyway, I range from feeling perfectly normal (like getting P.O.'d in heavy traffic) to totally scared S---less! (like I forgive everyone who drives badly in heavy raffic - and I'm really, REALLY super patient and understanding). I tell myself no one lives forever, so why can't I be the first? ------------------------------------------------------------------------------------------------------------ The fact is we are all in the "soup" together, and each of us will react differently to the same cancer, and the same treatment. I read some of the stuff on the WWW from the National Cancer Institute, and boy was that a mistake … I suggest you blow right past that "opportunity." One thing they did say that caused me not to wait any longer (like my Dr. suggested - he wanted to wait, it turns out, because he did not know how I would react to the 2cda! Who cares! I want to be cured. "CURED", Ha! What d es THAT mean?) … I digress … NCI said that the prognosis depends on the spread of the cancer in the marrow, age, and health. Anyway, this is where I am today. Tomorrow? I hit the gym for upper body, then a 2+ mile run. Next Saturday I go down to Camp Pendleton to run for about an hour (usually 6 miles). Wish me luck, there are good sized mountain lions around there, along with fat rattlers (they have abundant food sources - I do not wish to be one of them). When I write my Marine buddies we always s gn off with Semper Fi. You all are my "Honorary Marine Buddies" now so, Semper Fi. Rob

Jean Bradley - 04/15/98 12:46:07
My Email:ian_clegg@Bigfoot.com

Comments:
I am 43 years old and live near Manchester England.I was diagnosed with HCL in November 1997 after two years of continuous colds and flu.It was discovered because I was experiencing severe hip pain. My doctor sent me to a rheumatologist who organised an M I scan and ordered blood tests. The scan showed that the bone marrow was affected and the blood count showed a white count of 2500 and platelets of 90. I was sent to the Manchester Royal Infirmary under the care of Dr Yin who did a bone marrow test. Hairy cell leukaemia was diagnosed. Dr.Yin said that I have probably had this disease for about two years, which explains the recurrent sicknesses and the unbelievable tiredness I had been experiencing. About a year ago,on yet another visit to my G.P. she presc ibed Prozac because she thought that the minor illnesses I had together with the tiredness was probably due to stress. Needless to say the Prozac didn't make a scrap of difference to how I was feeling.When I was diagnosed with HCL it was almost a relief t know that I wasn't going crackers and I am physically ill! At Manchester Royal the doctors are very supportive and positive. Don't panic! they said. On February 9th I started treatment with 2-cda. I went to the hospital Monday to Friday for 5 infusions b I.V. which lasted 3 1/2 hours daily. I was really scared. What a terrible feeling it was, sitting there watching poison drip into me. I was absolutely fine until the evening of the last day. I had a fever of 39 degrees and then started to be sick. I felt really rough all the weekend. I went back for a blood test on the Wednesday and was still feeling shaky. It turned out that my white count had dropped to 50 and I had an infection. I was hospitalised for a week while they administered antibiotic therapy. y I.V. again! My arms were so sore! All the while I was having daily injections of Neupogen,a growth stimulating factor. It took a further two weeks for my counts to come back up. My white count went to 2300 and the platelets which had dropped to 50 came p to 130. I had to stay home for another two weeks then I went to see Dr Yin again. The counts showed another slight improvement. My next appointment is the 11th May when Dr Yin may do a bone marrow test depending on the blood count. He also said that we ill discuss when and if I should have another round of the chemo. This shocked me as I thought that only one was necessary to achieve a remission of some kind. I went back to work after 8 weeks but I am feeling so tired. I have to keep on taking Septrin, massive anti-biotic as a prophylactic but today I am off work again. I went to the G.P. and now it seems that I have yet another chest infection which means yet more anti-biotics. Actually, I still feel better than I did before the 2-cda,even with the in ection. I am convinced that the chemo has worked at least to some extent. Has anybody out there had repeat sessions of the 2-cda? I must admit that I did feel panicky when he suggested that I might have to go again, I thought he was trying to say in a nic way that it hadn't worked too well. I hope that I don't sound too negative because on the whole I am fairly positive about things, I am just feeling a bit "wobbly" at the moment.So if anyone has any info for me just address the e-mail to "Dear Wobbly-Bot om" as we say in Manchester!

Roger Francis - 04/03/98 16:48:18
My Email:rogere@accnorwalk.com

Comments:
How nice it was to find your diary! I built my house and had a party, sound familiar? I lost my energy after that. I got sick 11/24/97 with a fever and sore throat.Antibiotics did nothing, and was hospitalized with pneumonia 12/3/97. I was diagnosed with HCL. My pneumonia did not treat well, a week an a half later I got pulmonary embolisums in lungs. That almost done me in. I finally got better, and got out of hospital 12/24/97. I was sent to see Erick Kraut, at Ohio State Medical Center for reccomended treatment. I was sent back to Sandusky Oh. for Dr Murphy to treat me. I am being treated with Nipent, every two weeks. I have tolerated this very well. On monday 4/6/98 I will be going for my 6th and suposidely last treatment. They will do a bone marrow biopsy and bone scan, and then go from there. I dont have the stats on my blood, but I was real sick. With each treatment my levels came up. Bless you for your HCL diary! It is so nice to hear about others, as this is a rare leukemia. Good luck to everyone! Roger Francis E-Mail rogere@accnorwalk.com

Steve FIkar - 04/03/98 05:22:17
My Email:sfikar@aol.com

Comments:
My name is Steve Fikar. I am a 42 year old white male in otherwise picture-perfect health. I have had unusual blood counts for the last 2 years, however, and one month ago was finally diagnosed with HCL. My internist had been concerned with my platelet counts (in the range of 60-65) and finally ordered a blood test that noted 'hiary cytoplasmic projections' on my lymphocytes in the test results. I was then referred to my hematologist/oncologist who then performed a bone marrow biopsy on my hip to absolutely confirm the diagno is. My doctor said that one form of treatment with 2-CdA was to give 5 days of treatment for 2 hours per day in his office. The other form of treatment was 7 days of continuous infusion. We opted for the 7 day continuous option since my doctor did not feel t at there was reasonable proof yet that the 5 day,2 hours/day treatment provided the same remission rates as the 7 day continuous option. Two days later I started the normally accepted treatment for HCL--7 day continuous infusion of 2-CdA at a dosage of 0.1mg/Kg/day. I was admitted to the hospital for this since I would receive the treatment via IV. My IV was changed every three days to a oid infection. I asked the doc if using an IV versus a pic line was OK since I was worried that the drug might rot my veins out. He said not to worry and I believe that now since my veins appear to be OK. I had to haul my infusion pump everywhere I went in the hospital, I mean everywhere. What a drag. There were several times the nurses did not 'program' the pump correctly or they forgot to open a valve or something. It pays for the patient to watch wh t is happening to you and persistently ask questions if something is not right. Stand up for yourself and your rights. I felt perfect for about the first 4 days, then got worse progressively so that by day seven (last day of 2CdA) I was really sick. I had developed jaundice for some reason and my liver function was awful. I didn't eat anything from days seven through te . I had a 101-102 fever, probably due to the drug, not any infection, had night sweats, and generally felt really bad. I was finally released at day 13 (thirteen days in the hospital). I feel great now at day 23, 10 days after release. Starting day 9, (2 days after the 2-CdA was completed) I got daily injections of something called neuprogen (sp?) that boosts my white blood count by stimulating production of neutrophils which are one component my overall white blood count. After five s ots, my white count peaked at 3.5 at day 13, approaching the low side for normal. Its sort of nice to feel like I cheated mother nature by getting my neutrophils up so fast. Today at day 23, my white count has backed off to 2.3 because the effects of th neuprogen have largely worn off. At this point, day 23, my liver function is essentially normal again. The doc has no idea why it acted up starting at the end of chemo, one possible reason is that they gave me a drug called allopurinol daily during the chemo to prevent gout. I thing my doc will not do that again and from what I have since read, the allopurinol is not really necessary. I only have very minor side effects at this point: still a little bit of night sweats and also, curiously, a very small tremor on both my hands. The doc does not have any answers for either side effect but neither he nor I believe that they will continu in the long run. I did have an irritation in may last IV site used to administer fluids and antibiotics. It caused soreness, red skin over the vein, and slight swelling. It is also improving. It pays to keep IVs in one site no more than 3 days. I think this site was u ed for 4-5 days. Three days should be the max! Overall I feel absolutely great now. I plan to start exercising tomorrow and will start work full time in a few days. I've been working half days this week (days 20-23). My blood counts are doing great and my next visit to the doc is one month from now In three months I'll get another visit. I think that this will be a visit to determine if I have reached full remission (no hairy cells present). He will do a special blood test, something like ??flow cytometry?? which is an excellent method to determ ne the presence of the disease. Based on my counts so far, he is confident that I will respond very well to the 2-CdA in the long run, I hope and expect that it will result in a full remission. He does not expect to have to do another bone marrow biopsy (which can provide more conclusive proof of remission) since he believes that someone that has responded well to 2-CdA and has good blood counts and passes the 'flow cytometry' test does not need the bone marrow biopsy. I'm happy about that philosophy. By the way, the bone marrow biopsy is not so bad since they deaden the skin and underlying tissue next to the bone. I was given something to relax me (I think Demerol) but I wouldn't take it agai since I really didn't feel any pain and I was fully aware of what was going on during the entire procedure, it was just the feeling of a lot of pressure on the bone. This was more just an odd feeling than a painful feeling. FYI, I am providing some of my blood counts. day 0 is prior to chemo, day 7 is the end of chemo. Today is day 23. The normal ranges are given first and then my values follow. day platelet RBC WBC neutrophils lymphocytes 130-400 4.4-5.8 3.8-10.8 1500-7800 850-4100 0 61 4.2 9.3 837 8370 7 .5 9 64 4.1 .9 800 100 12 86 3.6 2.6 13 3.5 16 165 3.9 2.6 23 233 4.2 2.3 1700 500 I feel very positive about my future. Thanks to Mark for writing his journal and providing this forum. I’ve read the journal three times now and it really helped me. Please feel free to E-mail me with questions or for whatever reason. Steve Fikar Niceville, FL

c john seattle - 04/02/98 18:07:58

Comments:
diagnosed 10/97 with no symptom but slightly enlarged spleen..........decided with Dr. to go on six month checks...just did the first yesterday and blood work showed no appreciable changes, so we wait again...doc told an intern who was in attendance he ho estly did not know when 2cda or other treatment would be needed...only that it will be and could be 6 mos or several years! and so it goes. i'll beat those "fuzzy little guys", as i call the hairy cells. good luck to all.

Mary - 03/29/98 09:50:36
My Email:mightymeme

Comments:
Boy am I confused! Does anyone have an answer as to how HCL is contracted? The first thing my Dr asked was "what chemicals do you come in contact with at work?".My answer was "none". Diagnosed in 1988 after at least 3 years of colds, flu's, sore throats nd extreme fatague. At that time only treatment was spleen out. Been in remission ever since and I consider myself very lucky. This is the most information I have ever seen on the subject. Thank you!!!

Mary - 03/29/98 09:50:11
My Email:mightymeme

Comments:
Boy am I confused! Does anyone have an answer as to how HCL is contracted? The first thing my Dr asked was "what chemicals do you come in contact with at work?".My answer was "none". Diagnosed in 1988 after at least 3 years of colds, flu's, sore throats nd extreme fatague. At that time only treatment was spleen out. Been in remission ever since and I consider myself very lucky. This is the most information I have ever seen on the subject. Thank you!!!

Mary - 03/29/98 09:49:05
My Email:mightymeme

Comments:
Boy am I confused! Does anyone have an answer as to how HCL is contracted? The first thing my Dr asked was "what chemicals do you come in contact with at work?".My answer was "none". Diagnosed in 1988 after at least 3 years of colds, flu's, sore throats nd extreme fatague. At that time only treatment was spleen out. Been in remission ever since and I consider myself very lucky. This is the most information I have ever seen on the subject. Thank you!!!

Norman Tessell - 03/28/98 16:28:59
My Email:normant@worldnet.att.net

Comments:
I run marathons and other distance races for fun. As a member of the Team in Training for the Leukemia Society of America, I will run in the first Rock 'n Roll Marathon (26.2 miles) in San Diego on June 21st. I have HCL. When first diagnosed, I was told hat HCL was very rare and as a chronic condition, it was something which I would/could live with. Although my counts are still ok, I know that there is the eventual probablity of 2CDA therapy in my future. That leads me to both recognize how serious the c ndition was in the past (before 2cda) as well as realize how lucky I am to have a form of leukemia which is treatable. Unfortunately there are many others, kids and adults who have acute forms of leukemia, myleoma, and related disorders and have to underg more severe therapies. I am collecting money prior to the run which will go towards research, patient services, and education and I need your help. Please send contributions (checks or money orders) payable to the Leukemia Society. Mail $ to P.O. Box 85 ewtown, PA 18940. If you wish, I will wear your name or the name of a loved one on my back to recognize their fight against leukemia for a donation of $26.20 or more. Thank you. If you get this after June 21st, don't worry, you can still send in the funds. There are many o her marathons ahead for me.

Johnna Stumpf - 03/27/98 23:45:15
My Email:mthomas@usao.edu

Comments:
Hello I am a junior at Chickasha High school in OK and I'm writing a term paper on Leukemia. So I was wondering if anyone could send me some info about it please.Also if anyone could answer some questions for my paper I would love the info and to learn more about it!

Gail Watson - 03/25/98 01:00:10
My Email:schmooze@webtv.net

Comments:
I enjoyed your diary very much. I have CML-Chronic Myelogenous Leukemia for the past 7 mos. It has been a rough road to travel. I was in the hospital for 49 days. I am now retired, orders from the doctor and told to have quality time. I amm 50 yrs old. S this is a great adjustment. I am trying to learn everything I can. My question is, how does one know when they are in remission? I take oral chemo every day, see the doc once a week and sometimes I am on intraferon. I am always tired. If there is anyon who would like to write please feel free to do so.

Andrew Wagster - 03/23/98 01:01:26
My Email:awagster@linknet.kitsap.lib.wa.us

Comments:
I just wanted to say, that as a hypochondriac, I constantly think I have whatever disease I've read about recently. I honest-to-god thought that I had the bubonic plague once ("Sure, they *say* that it was wiped out, but...") and I thought I had appendici is during my entire fifth grade year. However, after reading your journal (loathe to call it a diary), I've realized that there are people who've gone through worse than I have (which I guess isn't saying much, since I don't have anything), and ended up f ne, and I really admire all of you for it.

Alan Morris - 03/18/98 14:58:57
My Email:Alan.Morris@education.hounslow.gov.uk

Comments:
Thanks for these pages it is so refreshing to find people who have actually heard of Hairy Cell Leukaemia. I am a forty five year old Englishman living close to London. I was diagnosed with Hairy Cell Leukaemia in 1991 when I finally admitted to myself that I really was not very well, and went to see a doctor. At that time I was so weak and anaemic that I co ld barely walk, only later was I to discover that my Haemoglobin was the lowest the medical staff had seen in a walk in patient and I had a White blood cell count well below 1. The medical staff could not understand how I was still walking around, and ho I had managed to avoid major infections. Needless to say that didn’t last long, after a week in an isolation ward and the transfusion of 9 units of blood, I managed to contract septicaemia and I really did think that my number was up. There is no doubt that the diagnosis and intervening years of treatment on Interferon have been very stressful, it has changed my life and the way I think about the World, but strangely it has had a very positive effect on me. I have often wanted to wri e my experiences down, but always wondered who would be interested ............maybe I should just do it! Well, 7 years down the line and on advice from my consultant, I am now going for a more permanent solution and am currently undergoing treatment with Pentostatin. Early results look very encouraging. After declining blood counts all last year whilst on Interferon, I have now managed to make up all these loses in just 6 weeks of treatment with Pentostatin. To all those out there undergoing treatment I would like to send my best wishes, the prognosis for us all is good and still improving.

Alan Morris - 03/18/98 14:57:12
My Email:Alan.Morris@education.hounslow.gov.uk

Comments:
Thanks for these pages it is so refreshing to find people who have actually heard of Hairy Cell Leukaemia. I am a forty five year old Englishman living close to London. I was diagnosed with Hairy Cell Leukaemia in 1991 when I finally admitted to myself that I really was not very well, and went to see a doctor. At that time I was so weak and anaemic that I co ld barely walk, only later was I to discover that my Haemoglobin was the lowest the medical staff had seen in a walk in patient and I had a White blood cell count well below 1. The medical staff could not understand how I was still walking around, and ho I had managed to avoid major infections. Needless to say that didn’t last long, after a week in an isolation ward and the transfusion of 9 units of blood, I managed to contract septicaemia and I really did think that my number was up. There is no doubt that the diagnosis and intervening years of treatment on Interferon have been very stressful, it has changed my life and the way I think about the World, but strangely it has had a very positive effect on me. I have often wanted to wri e my experiences down, but always wondered who would be interested ............maybe I should just do it! Well, 7 years down the line and on advice from my consultant, I am now going for a more permanent solution and am currently undergoing treatment with Pentostatin. Early results look very encouraging. After declining blood counts all last year whilst on Interferon, I have now managed to make up all these loses in just 6 weeks of treatment with Pentostatin. To all those out there undergoing treatment I would like to send my best wishes, the prognosis for us all is good and still improving.

casey gardner - 03/17/98 17:45:03
My Email:caseycase@hotmail.com

Comments:
Hello. My name is Casey Gardner. I am a junior at Mt. Diablo in CA. I am writting a paper about leukemia and i was wondering if there is any way you could send me information about this disease. thank you very much, Casey

Robert B. MacNichol - 03/12/98 23:43:07
My Email:mac5@home.com

Comments:
Rob’s HCL Adventure mac5@home.com Robert B. MacNichol Hello everyone! I’ve been keeping tabs on your experiences while I’ve been going through my treatment for HCL with 2CDA. I will speak to Mark but really this is for all of you. I have written to you before, and still see my message posted. Below I ha e included my "dairy" for what it’s worth. I have put in my silly, and wordy comments as well as important information concerning my experience so that you might view my state of mind as I journeyed through my experience … I’m still on the journey. Three possible connections/causes (no one is sure) are: Those who have had mononucleosis, those who work with farm pesticides, and those who have taken lots of pain killers. If Tylenol PM falls into the third category (along with aspirin) I’m guilty of pain killer abuse. You can bet I haven’t touched a thing since being diagnosed. I never had Mono, nor have I worked with pesticides other than zapping a few ants around the place (very occasionally). I started out by electing to go through treatment rather than wait. All I’ve read from the Nat’l Cancer Inst., and it’s British equivalent says that the sooner you start, the better the prognosis. My 2d opinion doctor (Dr. Douer) said the same thing. o not wait. If there is any detected, get the treatment. That’s what I’ve learned and that’s what I am, and will do. Dr. Douer is very interesting. He is an Israeli who was in the front lines, as a Dr. (Israeli doctors go to the front – we traded war stories from the Sinai to Vietnam). He currently works at the Norris Cancer Center at Univ. of S. Cal (USC). He told e that the Israeli Army Chief of Staff has Hairy Cell Leukemia, that it was top secret, that he came to S.Cal’s Scripps Inst. for treatment, and now it is no longer top secret, so he could tell me about it. If you read my rather long dairy you will see that I found the treatment easy to go through, and did as expected for two weeks afterward. The third week my counts were down, and the 5th week, (unlike you Mark) I was not in the normal range, and in fact ll my counts were lower except for my platelets, which have been higher (following chemo), but I’ll take what I can get. My Dr. seems unconcerned. He says he looks for "large" shifts in blood counts and does not see that in me. He further said that it can take three to six months before the blood counts return to normal. It all depends on the individual. Here’s the rub, and I would greatly appreciate anyone who can input info into this; I’m not concerned about the counts per se, I’m concerned as to whether or not these low counts indicate that the chemo did not kill the cancer, and that I’m refractive to 2CDA. Who does not worry about that? Again my doctor, and nurse seem very upbeat over "how-well-I’m-doing." Mark I do not know if you can include all my information, please let me know. I also know that in 5 weeks you were in the normal range. I exercise, lift weights and run, I never stopped drinking coffee, an occasional 6oz. Glass of wine. I have not tak n Echinacea. My Dr. feels that it does nothing, and could harm me. At any rate it ostensibly only helps the WBC …all your blood counts went up. I’m thinking that this would have been the case either with or without Echinacea??? Who knows, everyone, do tors included, have their feelings, beliefs, evidence, etc. Currently, I’m in the sit and wait position. I will start work Monday, I guess I could have stayed at work, looking back on events, but I did not know. The Doctor thinks it will do me good, and get my mind off the long drawn out process. I asked him i exercising would account for the low blood counts, he does not think so. The two weeks following chemo they went up, but I really rested a lot. Perhaps some of you have professional advice from your doctors on this stuff, and would not mind sharing it. Concerning my counts, "normal," "high," and "low" depend on the machine measurements. For me normal for WBC, for example is 3.3-10.5 … I’ve seen past blood checks for me at 11+. Some machines are calibrated at 4 for low normal. Anyway, everyone have a good day, and good luck. My Dairy, Saturday It's Saturday. I go to chemo Monday. I decide to hit the gym. I worked out for an hour, and ran three miles. While I didn't break any records, I really felt great. Wonder when I'll be doing it again. As I ran the last 3/4 mile it started to rain. Just a sprinkle. I got it in just under the wire; I jumped into the car, it began to pour. Two ladies in the gym told me how great I looked! I didn't tell them that looks can be deceiving. I just reveled n the glory ... yeah! Today I start taking one Allopurinol per day to keep the uric acid from building up in my body. Sunday I attended a Lunar New Year party celebrating Tet. Life is all around me; children, young parents ... and old. I hear the pounding drums, the clashing symbols, the roar of the firecrackers to scare away evil, I see the huge dancing dragon in Little Saig n ... it's the year of the Tiger. Tomorrow I begin the chemo. Monday Feb 2, 1998 Today was the first dose of 2CDA. It lasted 45 minutes. The nurse said because my spleen is normal, that the disease was caught early. She added that I would have no problems this week, and maybe not at all. I feel fine (as of 2 hours later). I went to Starbucks and bought 2 Maple Oatnut Scones (1 for today, 1 for tomorrow). I finished vacuuming the house. Tomorrow I'll do some more with the wand vacuum. I want the house to be clean. It's a good diversion, makes me feel useful (the place eeds it), and it keeps me away from crowds so I do not go out and shop, etc., etc (thereby catching some "thing"). I brought my portable phone so I could talk to my wife at her work while I got zapped with 2CDA. Also, when I was done, I could call the front desk and get the nurse to come and "disconnect" me. I go into the Dr.'s office for treatment ... no pump ... I'm glad (4 days left before the real fun begins!). I now have a good excuse to sit and read. I'm currently reading Viet Nam The Origins of Revolution. I read the chapter on the Genesis of Nationalism. The stock Market is up over 8107.78! I bought some Microsoft at 143+. today it's up to 154+!! What a deal. Unfortunately I also bought some Netscape ... at 46 bucks (sad). Microsoft will split (and go up), Netscape will survive, My IBM is hanging in here :) I did ask the nurse what would happen if, say, I got two days of 2CDA and a major earthquake hit, and I couldn't get further treatment for a couple of days? She did not laugh. Forgive me for thinking of these "what if" situations, after all I have contr cted a rare disease, why not an earthquake too? Oh yeah, for what it's worth: the 2CDA ran $1200 bucks, looks like water, I did not feel anything (oozing into me), I squeezed the bag, it did not squeeze back! I asked why they treat patients in 5 days verses 7 by other Doctors. Well ... it seems that hey are off on the weekends (golf, sailing, staring into a cup of coffee, etc.), so they "up" the dose and do it in five days. I asked if they could "up-up" the dose and do it in 4 days, or even three, two, or one ... again no laughter, I guess they need the weekends off. Tuesday Feb 3, 1998 So far this morning I still feel fine. I dared shave with a razor ... Ha! I keep washing my hands fearing infection (I think about excessive, compulsive behavior) ... probably this first week (chemo week) It's not a major problem. I'm still thinking, "T e other shoe will drop next week..." My appointment today is at 10:30 ... It's raining like hell in Southern California; can you believe this stuff? My bonsai's are soaked. At least I don't have to touch the dirty hose nozzle. I just finished the 2d dose. Another 1200 bucks. Between yesterday and today, I could have bought a decent laptop for two 2CDA treatments. I still feel fine, I even wonder if the stuff's working. I'm sure I'll feel "something" sometime? The appointment lady at the front desk had a cold, so I told her I'll be in tomorrow at 9:30 ... but I did not go near her, nor did I want to touch any appointment slip she filled out and handed me. The "drip, drip" took 1 hr. today. I almost reached over and adjusted the drip to a faster setting myself (in walked the nurse - a wonderful lady - and did it for me). I ask the Dr. why they don't give out antibiotics "BEFORE" I get something. He said because we don't know what you'll get BEFORE you get it ... duh? Sounds good. Why don't they know if they're so smart? Hummmm. I asked the nurse how soon this stuff begins working. She said right away. That's good, I like to imagine the first cancer cell turning the corner feeling smug, and running smack into sudden death. As a former Marine, I like "smacking" bad things ... th y deserve it for: 1. Scaring the hell out of me, 2. Making me go thru the bother, 3. And just because! (like who invited them?). Wed Feb 4, 1998 Today I got the third installment of 2CDA ... that's $3600 bucks so far. Now ... I could certainly get a good laptop for that! The daily bill runs $1536 X 3 = $4605 total ( (for the Dr.’s visit, and Nurse's attention - my nurse is Phyllis). Phyllis tells me she used to live in the Texas town HUNTSVILLE, where Karla Faye Tucker got executed. Phyllis' husband used to work in that jail (which is located in the center of Town). What a small world we live in. The Dr. asks if the rain is over. I tell him it returns tomorrow. This causes a grim look, he asks me how I'm feeling? I say I think I want to run three miles today. I have all this energy! Is that normal? Will I get sick? He says you'll feel lou y this weekend ... JOY! I went shopping, cleaned some of the house, went shopping again. Oh! I went to Starbucks for a coffee, and a Maple Oatnut Scone. Last night I OD'd on German chocolate. If Hitler had attacked with chocolate he would have won the world[?]. "They" say t's the candy of love ... hummmm. I asked Phyllis if I could keep an empty bag of 2CDA for a souvenir? "Definitely not. It's a bio-hazard!" "Yeah but you're sticking it in my arm and all around my blood, bones, etc. How hazardous could a used plastic bag be?" " We can't." She emphasizes. Well at least I read what was on the bag before she took it away. I also asked if she could speed it up by increasing the drip speed? "No it has to be between an hour and one and a half hours." It's a good thing I didn't speed it up myself like I thought about doing. Well today I read more about the August revolution in Hanoi 19 Aug 45, by the Viet Minh in "Viet Nam: A Dragon Embattled," by Joseph Buttinger. Thur Feb 5, 1998 I got the 4th blast of 2CDA. Read more about the August revolution in VN 1945 as I sat "plugged in" to the "juice." The Dr. showed me my blood counts, all hanging in there. So I'll make it thru the weekend with a non-event. I'll see him Monday, and he can prescribe white cell colony builders (sounds like a commercial) then if I need them. I feel a bit weak, but not sleepy. Got a flat tire in another car, had to get some air in the tire ... it's slow leak ... no biggie, I got three cars, and plenty of volunteers to give me rides to the Dr. if I need um.. Had another Maple Oatnut Scone ( OS) from Starbucks ... uuuuuuummmmm Good. Probably next week or two I'll be laying off the "good" stuff, and getting serious about real food. Oh yeah ... my platelets went up! Maybe I'm thriving on 2 CDA? Maybe I don't have HCL, but am going thru the throws of becoming a vampire. Don't they need healthy blood? And sleep during the days? I do not even want to look at a mirror! Phyllis and I talk about research and the use of monoclonal antibodies. That's the next thing after 2CDA ... I speculate. She says they're using it now for lymphomas ... that's what HCL is!! Well new things are coming out every day, week, month. I thi k 5 and 10 years down the road (and even 18 months from now) cancer will succumb to modern science. Maybe not all cancers (completely), but they'll all be more manageable. I wonder ... if a species can contemplate its mortality ... can it overcome its mortality? Dee, dee, dee, dee (Twilight Zone). Oops, I'm giving away my age ... I mean the X-Files ... Fri Feb 6, 1998 I feel a bit weak today. If I sit in front of my 20" PC monitor, in my nice comfortable chair I can easily hack thru the net, and other stuff. This does not take much energy, and I find that my mind is wide awake. Only when I get up and do chin-ups, an sit-ups do I feel tired (just kidding). Rain is on the way, it's the height of the flu season, people are dropping all around me, I feel none of it. I'm impervious to their germs. What is this anyway? Shouldn't I really be hurting? In time perhaps ... We'll see. I finished the last bag of 2CDA. So far there are no side effects that I can notice other than I feel a bit exerted if I go to the store, or unload the car, or jog in the rain to the house ... all of which I did today. I also ate 3 sugar glazed doughnu s. I promise to start behaving myself. I do have some spaghetti and meatballs from Papino's that I brought home, and then there is a glass of wine ... for my heart ... it's good for you! Over the next few days I'm sure I'll slow down, and as they used to say in the A-bomb commercials of the 1950's I'll, "... just duck and cover!" I think Clinton has more problems than I do. Except if I do not get the wash done my wife will kick my BEE- ind when she gets home. Sat Feb 7, 1998 This morning I felt a bit weak, but not much. I have continued to read, write, and stop occasionally to do some laundry. I have eaten a frozen dinner (Healthy Choice) No problems. I also did the laundry, and cleaned the front porch, made the bed, etc. I do not feel much like doing anything, but after I get started, I feel fine. Presently I'm quite hungry, and will eat lunch then watch the TV. No more 2CDA to take, and only 4 Allopurinol :) ... For the present I'll have a cup of coffee and surf the net. Got Hungry. I went out to eat, felt really tired. After I ate I felt better. I did not feel hungry, and did not finish all my dinner, but I did feel much better after dinner. I came home, watched TV, then about an hour latter got real hungry and "pigged out!" I had milk, toast (English muffins) and surfed the net. Sun Feb 8, 1998 I got up this morning feeling great! I took a shower, had a cup of coffee, and got in the PC to write this. I'll relax in front of the TV and eat when I feel like it. Mon Feb 9, 1998 Got up this morning had two cups of coffee, two cups of oatmeal, a glass of O.J. I relaxed until 8:30 then made up the bed, shaved (with a razor), and got on the PC. 11:00 I had lunch. I went to the computer store and checked out printers, photo copiers, and external drives. 2:20 PM saw the Dr. He said this Thursday he will probably give me shots to promote white cell production. My RBC are up at 3.82 normal = 4.35 - 5.9 Hgb up 13.50 = 13.7 - 16.7 WBC down 3.30 = 3.3 - 10.5 Platelets up 113.00 = 144.0 - 372.0 Tue Feb 10, 1998 I woke up after a good long sleep. Felt great, but wonder how my WBC is doing this morning. I've been eating, munching, etc. Watching Monica Luwinski vs. the "people." Also watching the stock market on Netscape via Yahoo. No e-mail. I've been thinking about this whole "thing." To be honest I've had mild colds that were worse than the whole experience (so far - knock on wood) with HCL, Chemo, and recovery. I attribute this to early detection (I do not know my present status concerning HCL still in me - until a bone marrow biopsy), luck, health, and age. We'll see as time passes on. It's been great so far. I have one more Allopurinol tablet to take then I'm off the meds, except for WBC shots. I may not even have needed the alopurinal. It seems that an HCL patient before me had a huge spleen, and as a complication from the 2CDA he got what the nurse told m they call "Tumor Kill" = (I guess it's a shock to the spleen to kill too many WBC all at once which was his case ... anyway he developed a kidney stone from it due to this spleen problem, so the Dr. was cautious with me and gave me the alopurinal. My sp een is normal, so much of the problems many have did not happen to me. As can be seen from my blood counts, I am low but nearly normal and have even gone up prior to chemo to normal counts. At one time after low counts my RBC went to 5.6, WBC 4.6, and platelets up to 130 (not normal but they were down to 96). Wed Feb 11, 1998 Feel great! ... drove my wife to work. Took the last of the Allopurinol :). Thur Feb 12, 1998 Saw the Dr. at 9:30. He said he could not believe how well my blood counts were doing. My RBC Dwn (.03) 3.79 normal = 4.35 - 5.9 Hgb Same 13.50 = 13.7 - 16.7 WBC Dwn (.3) 3.00 = 3.3 - 10.5 Platelets up (4.0) 117.00 = 144.0 - 372.0 The Dr. said I did not need WBC shots as yet. Maybe I will not. In the mean time I can do whatever I want ... should I get a fever, or sore throat ... see him right away. Friday -or- Saturday I will begin working out (very lightly). I feel great, no problems with my health. In fact people all around me are sick, I'm not. I attribute some of this to being at home and getting plenty of rest while those who are sick, are o t and about with work, kids in school etc. Fri Feb 13, 1998 Got up today, felt fine, ate breakfast at IHOP. Relaxed. Sat Feb 14, 1998 Felt ok today. Sat around the house and surfed the net. Ate good food, watched TV, read a book. Sun Feb 15, 1998 Felt ok until I went out shopping. I felt a little light headed, and tired. Don't know if it's the blood counts or if I stayed up too late, or both. Rested at home, ate, did WWW stuff, and TV. Mon Feb 16, 1998 Saw the Dr. at 2:30. He told me that my red and white cells are down and to come in and see him on Thursday. At that time he will determine if I need a "boost" for my white cells. At this point he does not think I will. He told me this week should be he low point and the counts should start to raise. My platelets are in the normal range at: Now Normal up/dwn beginning 2CDA Platelets 163 144-372 (up from 117) 69 White 2.8 3.3-10.5 (dwn from 3.0) 4.1 Red 3.52 4.35-5.9 (dwn from 3.79) 3.77 Hgb 12.7 13.7-16.7(dwn from 13.5) 13.6 Tue Feb 17, 1998 Felt a bit tired slept a couple of hours during the daytime. Wed Feb 18, 1998 Felt very good! Cleaned the house, did some laundry, went shopping for groceries. Thur Feb 19, 1998 Saw the Dr. at 9:45. The Dr. told me that my red and white cells are up and to come in and see him (once a week instead of twice) on Thursday. I do not need a "boost" for my white cells. All my blood counts have begun to raise. Now Normal up/dwn begin 2CDA Platelets 172 144-372 (up from 163) 69 White 3.0 3.3-10.5 (up from 2.8) 4.1 Red 3.67 4.35-5.9 (up from 3.52) 3.77 Hgb 13.1 13.7-16.7(up from 12.7) 13.6 Fri Feb 20, 1998 Felt good this morning. Thought I might have a cold last night, but I seem ok today. I'm going to do a very light workout this morning. Thur Feb 26, 1998 Well today really bummed me out my red, hemo, and platelets all went down, WBC went up slightly. The Dr. did not seem overly concerned, and said to come back in two weeks. Also I can start back to work. For the record my blood count is as follows: Now Normal up/dwn begin 2CDA Platelets 129.0 144-372 (dwn 43 from 172) 69.0 White 3.2 3.3-10.5 (up .2 from 3.0) 4.1 Red 3.41 4.35-5.9 (dwn 2.6 from 3.67 3.77 Hgb 12.4 13.7-16.7 (dwn .7 from 13.1) 13.6 I did not work out today. Perhaps? I'm pushing it to do any exercise at all, even though I have been doing very light workouts, from 15-20 minutes every other day. Oh well, time will tell. Thur 12 March, 1998 My blood counts are 2-down and 1-up. The nurse and the Dr. both said I'm really doing well, and that it can take 3-6 months for the counts to come up to normal. My blood count is as follows: Now Normal up/dwn begin 2CDA Platelets 142.0 144-372 (up 13.0 from 129) 69.0 White 2.8 3.3-10.5 (dwn .4 from 3.2) 4.1 Red 3.38 4.35-5.9 (dwn .3 from 3.41) 3.77 Hgb 12.3 13.7-16.7 (dwn .1 from 12.4) 13.6 Dr. Okun said that he was looking for big drops, and that was not happening, so he was not worried and has cleared me to return to work.

Kathleen - 03/11/98 22:58:09
My Email:mar-kat@oxford.net

Comments:
Thank you so much for the wonderful page and information. It has helped me and my Father greatly. My Father, now 70 yrs, was diagnosed with HCL over 10 years ago. He was given a bleak outlook and began treatment with deoxycoformycin, then still in the exp rimental stage. He finally went into full remission 1993 and was doing great. Just last week, his blood count went done and he may be starting treatment again on 16th March 1998 pending the bone marrow reading. ** I am trying to gather as much information about the latest treatments before this meeting (internet, library, etc). I have read here that his first drug, now named Pentostatin, still seems to be one of the best. Does anyone have more info, or a site where I could get it, on the 2CDA (?). I would ike to discuss it as a possible option.Thank you in advance for your help. I look forward to a reply.

Nina Weber - 02/28/98 21:32:51
My Email:NMWeb1601@aol.com

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I want to thank you very much for this personal diary, that must have been very hard for you. I'm 17 years old and I'm from Germany. Right now I'm in the US till August, I'm an exchange student. My mother was diagnosed with HCL in January 1995 and it tore my world into pieces. Suddenly I had to realize that we can't take anything for granted and that death is all around us. Fortunately there was 2CDA, my mother had two treatments, which worked with a delay. First the doctors thought she was totally cured but it came back. Now it's under control with Interferon, which she gets four days a month. I called her this morning and he told me that her HB was only 8.6 and she just had pneumonia. I'm so far away from her and I wish I could be with her right now. But I still believe that it's going to be alright, there's still 2CDA and reading all these personal stories helped me a lot If you have some time to write me or my mother in Germany (she speaks English) please do so, here's her address: Jutta_Weber@t-online.de And is there any possibility to get to this diary from the German Internet? Thank you very much again, I wish you good luck and strength, I will pray for all of you.

C. JOHN SEATTLE - 02/18/98 20:24:43

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MY POLLYANNA SIDE SAYS HAIRY CELL SOUNDS PRETTY OMINOUS, SO I JUST REFER TO THE DISEASE AS THOSE FUZZY LITTLE GUYS.

Mark Campbell - 02/18/98 07:09:20
My Email:leonidas@teleport.com

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It's good to hear from other people with HCL! My name is Mark and I'm now 39. I was diagnosed in mid 1994 after a visit with my GP for chronic hip pain. After X-rays and a CT scan of my hips showed nothing, a blood test revealed the HCL. Two weeks later I had the bone marrow biopsy, which confirmed it. (The most painful part of the whole treatment.) Within a month I was on 2CDA with a pik line and pump. Putting in the line was a snap, I almost naped through the whole process it was so painless. The pump was a drag to lug around for a week. Showering was awkward and I had a great conversation starter t work. Yes, at work! I didn't miss a single day of work through the whole treatment. After reading some of the other accounts here, I feel lucky to have been physicaly able to continue to work. I did get tired, and one day I felt like death warmed over, but by and large I felt pretty good. I did have a mild reaction to the 2CDA. My lower legs swelled a bit, but this was quickly taken care of by a short course of steriods. And after a day or two they were back to normal. After the week on the 2CDA, the hip pain just stoped. It was real weird, one day it hurt, the next it didn't. The hip pain proved to by a symptom of the HCL. The pik line stayed in for another 5 weeks as my blood counts were monitored twice a week. The counts improved slowly at first, but they had improved enough by the end of that time, that the line was removed at last. My blood counts stayed on the low end of normal for some time after the chemo, but they have now firmly settled into a quite healthy state. I'm feeling fine, with no signs of a relapse. I'm sure glad I was covered by health insurance. The Folks at Kaiser-Permanente here in Portland, Oregon didn't mess around. The treatment was I was given was top notch. And my out of pocket expenses were about $100. (Mostly for the twice a week visits fo blood and dressing changes) Through the whole process I managed to keep a positive outlook and not dwell on the potential negatives. Which kept my family and freinds from worrying too much about me. Feel free to write. And good luck. Mark Campbell leonidas@teleport.com

- 02/16/98 05:45:07

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- 02/16/98 05:44:55

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Charles DeCitise Jr. - 02/15/98 21:37:57
My Email:cdeciti1@nycap.rr.com

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I was reading thru your other mail and saw most people have something in common A SPLEEN. Our mother had hers removed which should not have happened because the spleen fights infection and being that her liver was not good her liver was doing double the ork whenever she became sick, which was most often because she was so suceptible to everything. Also, having her diagnosed with HCL and primary biliaryrosis of the liver she had a blood disease. Her blood was producing a "gunk" which the Dr's called it, they say they never seen anything like it. There was a time that her blood backed up and she almost lost her vision because we didn't know that this also was happening. She kept complaining of headaches and advised the Dr's and that's when they said the her blood was producing this bubble gum type stuff. There was no name for this, like I said they never experienced anything like it. To keep this problem from worsening the only thing they could do was for her to come in 2-3 x's a week and have all her b ood filtered out and put back in what was good blood and whatever was this "gunk" filtering in her bloodstream they would have to transfuse her with new blood. This seemed to work but her veins sometimes were not accepting to do this much longer. Finall it seemed that this was helping and she then only had to go maybe 1-2 a week but of course it seemed like a never ending battle. I feel for you and your family as I know this puts a great deal of stress and pressure on everyone and yourself of course. y sister and my grandparents stood by my mother all the way as I was stationed in GA and was unable to come home only on an emergency medical leave because I was in the ARMY. After my mother passed away I got out of the ARMY to be with my family through his most difficult time.

Charles DeCitise Jr. - 02/15/98 21:10:54
My Email:cdeciti1@nycap.rr.com

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Charles DeCitise Jr. - 02/15/98 21:01:39
My Email:cdeciti1@nycap.rr.com

Comments:
Dear sir, My sister and I are going thru a time when we are recovering from the death of our mother due to hairycell leukemia.She also was diagnosed w/Primary Biliaryrosis(spelling might not be correct)of the liver. She battled these diseases over a period of 10 y ars bouncing back and forth to remission.Last year on 18feb97, she passed away because her liver and kidneys stopped functioning.The HCL was treatable but the HCL broke off into another cell making it harder to treat due to the liver problems she had.Ever thing she took to treat the HCL and the other cell were giving toxins to the liver leaving it impossible for anything to be done for her.She did take the 2-CDA chemotherapy.One of the problems was she was Jaundice and constantly itchy.She used to take lar e bristle brushes and scratch herself raw.Her doctors were Dr. Sundkin and Dr. Ballint of Albany Medical Center in New York.They tried everything.And they kept her alive as long as they could.If you have any questions please E-mail us, we will help as muc as we can.

Fran - 02/15/98 03:56:34
My Email:Frantiklone@aol.com

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It will be two weeks this Tuesday that my husband started 2Cda. As you can imagine we were very apprehensive. The morning we went in to have the picc line inserted and the pump my husband (George) had a blood test. Wouldn't you know that his counts had been the highest they had been in a long time. Our minds were swirrling but we knew that this was our decision and that we were going through with it. After a 6 1/2 hour outpatient visit for the picc line insertion (it took the radiologist 3 hours to re d the x-ray) we headed over to the doctors office for the pump to be hooked up. Once the pump was hooked up we were on our way home. The next day we went back to the doctors office for a cleaning of the dressing. Other than having the dressing cleaned e eryday, and an occasional blood test the week went by very smoothly. During this week the blood tests stayed about the same. It was a long week but as George would say it could have been alot worse. George's energy was slowed but he kept on working in oderation the whole week. He had a little indigestion and was on medication for nausea but that was about it. We were very thankful. After a week it was time to take the picc line out and disconnect the pump. George had a little fever 101 that day but by that night it was gone. Two days later he had a blood test. His WBC went to 900 a few days later it went to 850. We were very surprised. We knew that the counts would drop after the medication but knowing they had dropped that much caused us a little concern. A day later they were to start the shots to boost the WBC. Two days after that they had jumped to 2.8. We were very thankful for that. George feels the effects of the 2Cda more now than when he was on the medicine. He takes a few cat naps a ay and says he feels tired. He also has some joint discomfort. Other than that he has not had any infection or some of the harsh side effects you would have with other chemotherapy. We are hoping that this will do the job. I guess we won't really know ntil a bone marrow biopsy is done. I hope this will help you understand a little more what this treatment is all about. We will be glad to answer any questions you may have. We will keep you all in our prayers as you deal with the decisons that are ahe d.

Fran - 02/15/98 03:56:04
My Email:Frantiklone@aol.com

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It will be two weeks this Tuesday that my husband started 2Cda. As you can imagine we were very apprehensive. The morning we went in to have the picc line inserted and the pump my husband (George) had a blood test. Wouldn't you know that his counts had been the highest they had been in a long time. Our minds were swirrling but we knew that this was our decision and that we were going through with it. After a 6 1/2 hour outpatient visit for the picc line insertion (it took the radiologist 3 hours to re d the x-ray) we headed over to the doctors office for the pump to be hooked up. Once the pump was hooked up we were on our way home. The next day we went back to the doctors office for a cleaning of the dressing. Other than having the dressing cleaned e eryday, and an occasional blood test the week went by very smoothly. During this week the blood tests stayed about the same. It was a long week but as George would say it could have been alot worse. George's energy was slowed but he kept on working in oderation the whole week. He had a little indigestion and was on medication for nausea but that was about it. We were very thankful. After a week it was time to take the picc line out and disconnect the pump. George had a little fever 101 that day but by that night it was gone. Two days later he had a blood test. His WBC went to 900 a few days later it went to 850. We were very surprised. We knew that the counts would drop after the medication but knowing they had dropped that much caused us a little concern. A day later they were to start the shots to boost the WBC. Two days after that they had jumped to 2.8. We were very thankful for that. George feels the effects of the 2Cda more now than when he was on the medicine. He takes a few cat naps a ay and says he feels tired. He also has some joint discomfort. Other than that he has not had any infection or some of the harsh side effects you would have with other chemotherapy. We are hoping that this will do the job. I guess we won't really know ntil a bone marrow biopsy is done. I hope this will help you understand a little more what this treatment is all about. We will be glad to answer any questions you may have. We will keep you all in our prayers as you deal with the decisons that are ahe d.

C. JOHN SEATTLE - 02/12/98 20:36:32

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THE FACTS IN MY CASE SEEM CONSISTENT WITH THOSE WHO AS ONE HAS WRITTEN "GOT OFF EASILY"....AT LEAST FOR NOW. A ROUTINE PHYSICAL AND BLOOD WORK SHOWED INAPPROPRIATE COUNTS AND AS THE DOC REVIEWED MY PRIOR RECORDS DATING BACK 5-6 YEARS, HE NOTED THE NEGATI E TRENDS THAT WHOLE PERIOD. NEITHER HE NOR THE PRIOR PHYSICIAN EVER SAID ANYTHING TO INDICATE A PROBLEM AND I WAS NAIVE OR DUMB...HAVING BEEN A VERY HEALTHY SPECIMEN FOR MY 55 YEARS! THERES NO QUESTION ABOUT MY HAVING HCL BUT WE ARE IN A WATCH STATUS QU RTERLY FOR NOW. ONLY SYMPTOM IS A SLIGHTLY ENLARGED SPLEEN. THIS HAS ALLOWED ME TO BE IN DENIAL ABOUT THE WHOLE DARN THING! AND LIFE GOES ON KNOWING 2CDA WILL CURE ME WHEN AND IF I HAVE THE TREATMENT. BUT WILL IT? I BELIEVE SO BUT.....FINALLY, FOR N W, WE TAKE GREAT COMFORT IN THE QUITE CONSISTENT HISTORIES, TREATMENTS, OPINIONS, ETC. THAT WE ARE READING. I HAVE CONSULTED TWO UNRELATED DOCS, BOTH OF WHOM HAVE EXCELLENT KNOWLEDGE OF HCL AND ARE WORKING SEVERAL CASES PRESENTLY...AND I'M GETTING THE SA E ADVICE AND RECOMMENDATIONS. SO FOR NOW, ONLY MY WIFE AND A COUPLE CLOSE ADVISORS KNOW OF OUR SITUATION IN HOPES THAT WE CAN SPARE ELDERLY PARENTS AND CHILDREN OF THIS "NEWS", AS THEY FACE THEIR OWN CHALLENGES AND OPPORTUNITIES.

C. JOHN SEATTLE - 02/12/98 20:35:19

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THE FACTS IN MY CASE SEEM CONSISTENT WITH THOSE WHO AS ONE HAS WRITTEN "GOT OFF EASILY"....AT LEAST FOR NOW. A ROUTINE PHYSICAL AND BLOOD WORK SHOWED INAPPROPRIATE COUNTS AND AS THE DOC REVIEWED MY PRIOR RECORDS DATING BACK 5-6 YEARS, HE NOTED THE NEGATI E TRENDS THAT WHOLE PERIOD. NEITHER HE NOR THE PRIOR PHYSICIAN EVER SAID ANYTHING TO INDICATE A PROBLEM AND I WAS NAIVE OR DUMB...HAVING BEEN A VERY HEALTHY SPECIMEN FOR MY 55 YEARS! THERES NO QUESTION ABOUT MY HAVING HCL BUT WE ARE IN A WATCH STATUS QU RTERLY FOR NOW. ONLY SYMPTOM IS A SLIGHTLY ENLARGED SPLEEN. THIS HAS ALLOWED ME TO BE IN DENIAL ABOUT THE WHOLE DARN THING! AND LIFE GOES ON KNOWING 2CDA WILL CURE ME WHEN AND IF I HAVE THE TREATMENT. BUT WILL IT? I BELIEVE SO BUT.....FINALLY, FOR N W, WE TAKE GREAT COMFORT IN THE QUITE CONSISTENT HISTORIES, TREATMENTS, OPINIONS, ETC. THAT WE ARE READING. I HAVE CONSULTED TWO UNRELATED DOCS, BOTH OF WHOM HAVE EXCELLENT KNOWLEDGE OF HCL AND ARE WORKING SEVERAL CASES PRESENTLY...AND I'M GETTING THE SA E ADVICE AND RECOMMENDATIONS. SO FOR NOW, ONLY MY WIFE AND A COUPLE CLOSE ADVISORS KNOW OF OUR SITUATION IN HOPES THAT WE CAN SPARE ELDERLY PARENTS AND CHILDREN OF THIS "NEWS", AS THEY FACE THEIR OWN CHALLENGES AND OPPORTUNITIES.

Linnie - 02/07/98 04:24:21
My Email:denney@primenet.com

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Bro, Just read your entry from today, 2/6/98..FANTASTIC NEWS! Come on out west. Let's celebrate. Love, Sis

Chris - 02/04/98 22:25:38
My Email:sailriparian@msn.com

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Hi everyone, my name is Chris Perkins, I am 38yo and was diagnosed with HCL in Nov '97, and received treatment with CDA for 5 days in a cancer clinic. I am also a general internal medicine physician, so you can imagine the shock when someone was telling e I had cancer! (I had a huge spleen, which I'd felt on myself) For all you folks that are frustrated by your doctor's lack of info/knowledge, it's frankly because it is so uncommon that few good "medical trials" have been done on HCL. I went to Duke M d school and only had a brief lecture on HCL (and they were just developing interferon therapy then). I have spoken with some of the "best" HCL experts and they seem to agree on CDA as the best treatment, but little else,(What else is new!) I believe the "best" MD may be at Scripps in San Diego, but would like to hear your opinion(s). I will be having a repeat bone marrow in three weeks to determine if any "hairy" cells are left, I feel great and was back to work after 5 weeks. As I learn more about this puzzling disease, I will post it, and hopefully can help some of you get the best information available. Thank God for CDA, and the researchers! Good luck, and great health to one and all!!

Susan - 01/31/98 18:49:15
My Email:pharmony@harmony.karelia.su

Comments:
I recently posted some comments about myself and HCL. After reading other people's comments, I thought I should write more. I was diagnosed in June of 1997, a 25-year old woman at the time. I actually felt quite lucky due to the fact that there was rel able treatment available (2CDA). My spleen was huge (my doctors told me they had never seen a larger spleen). I think it was 32 centimeters, about as large as a full-term baby. I certainly noticed that my stomach was getting larger, but only thought th t I was gaining weight. I work abroad, so I didn't even think about going to the doctor. I was also bruising very easily. From early May of 1997 thought June, I was so tired that I could easily sleep the entire day through and often did on the weekends. I was also sick with flu-like symptoms on and off for about two months. I thought I was just over-tired and over-worked. Upon return to the States, I went to the doctor and my blood counts were so miserable that I was asked if I was in the risk group for AIDS and was told in a rather circular way that I had acute leukemia. After more tests, it was discovered that I had HCL As I said, I felt lucky. I was first given 7 days of shots which increased my immune system and then was immediately started on a seven-day course of 2-CDA. Side effects were minimal. At about the 6th day, I had a slight fever, felt an aversion to fo d and generally felt uncomfortable. I had the 2CDA at home. A nurse from a home-health care company came to my home 3 times throughout the week and took blood. I highly recommend this if at all possible. I would imagine that there are more germs in a hospital than in your own home if you ake sure it is clean and keep visitors out. My spleen shrunk back to practically normal size, I lost about 15 pounds and was back at work in two months. My blood counts took awhile come up. My WBC fluttered between .8 and 1.4 for a few weeks which scared me. After 4 months, I went back to the doctor for a CT scan and a bone marrow biopsy. The CT scan showed an almost normal spleen, which amazed my doctor, but showed that a mass, near my heart, which was detected when I had my first CT scan had not gone away. My doctor thought originally that it was a lymph node. They needed to operate to do a biopsy on the mass. As it turns out, the mass was not cancerous and turned out to be normal thymus tissue. Doctors still don't know whether or not it is related to th disease. It is being monitored and I will most likely have to have a major operation to have it removed. Although it is non-cancerous, it could develop into a thymoma (so my doctors say). I feel great and will have another bone marrow in March to see whether or not I am in full remission. I honestly feel if I was never sick. I happened upon this web page by accident and am happy to see a forum in which to discuss HCL. Hope to see more peoples stories.

Susan - 01/31/98 18:19:28
My Email:pharmony@harmony.karelia.su

Comments:
I am a 26 year old woman who was diagnosed with Hairy Cell Leukemia last summer. I went through chemotherapy and am presently in almost full remission. I feel confident about my health, but wonder about my future as far as health insurance goes. I feel trapped in my present job and am fearful that if I leave, no other insurance will cover my disease if I need further treatment. I feel as if I am in the prime of my life and want to go to graduate school. Once again, I am fearful because of insurance. ertainly, I am not the only person to feel this way. Any advice or thoughts would be greatly appreciated.

William Cierebiej - 01/26/98 22:24:45
My Email:wt2@magicnet.net

Comments:
I started reading it, but had to take my youngest to his YMCA youth meeting. I've been in remission ffrom hairy-cell now for 4 years. It took 2CDA to finally kill it. Interferon didn't work(you don't know how bad you can feel while trying to get better) a d I was glad to be done with it. When I originally heard about 2CDA, I wanted to go to Scripps and be a " human lab rat". I let my doctor talk me out of it and I shouldn't. I'm planning on going back and finishing the diary! Take care, Bill C.

Nancy Denney - 01/26/98 03:32:11
My Email:denfam@airmal.net

Comments:
I enjoyed your story very much, although a bit lengthy. I confess I read as quickly as possible, looking forward to the nitty gritty details. I have a niece who has CML and she is only 12. She had a bone marrow transplant last July 4. So I am very int rested in finding out more about all the leukemias. She is currently having lung problems, diminished capacity. We are all worried sick about her, as you can imagine. It's part of dealing with the disease. Leukemia is such an awful thing and affects t e whole family. We all wonder, why her? She is so young. At this point we are trying to be optimistic. From most outward appearances, she seems very healthy, just lost a lot of weight. But I suppose only time will tell. It is the waiting that is unb arable.

Shirley Mangrum - 01/23/98 20:06:49
My Email:RMANGRUM@CONCENTRIC.NET

Comments:
This computer stuff is all new to me. My previous message had the wrong Email address. This is the correct one.

Shirley Mangrum - 01/23/98 20:04:06
My Email:RMANGRUM@CONCENTRIC.NET

Comments:
This computer stuff is all new to me. My previous message had the wrong Email address. This is the correct one.

Shirley Mangrum - 01/23/98 20:00:40
My Email:RMANGRUM@CONCENTRIC.NET

Comments:
This computer stuff is all new to me. My previous message had the wrong Email address. This is the correct one. Sorry!

Shirley Mangrum - 01/23/98 19:59:22
My Email:RMANGRUM@CONCENTRIC.NET

Comments:
This computer stuff is all new to me. My previous message had the wrong Email address. This is the correct one. Sorry!

Shirley Mangrum - 01/23/98 19:56:24
My Email:RMANGRUM@CONCENTRIC.NET

Comments:
This computer stuff is all new to me. My previous message had the wrong E mail address. This is the correct one. Sorry!

Shirley Mangrum - 01/23/98 19:33:01
My Email:RAY MANGRUM@CONCENTRIC.NET

Comments:
Hi everyone! I was diagnosed with HCL in July of 1995 and was told at that time that it was as if I was in semi-remission and might not have to be treated for 5 years. Here it is 2 1/2 yrs. later and I have not received any kind of treatment, but I have b en sick a lot (never was prior) during this time. I go through periods of feeling good with a lot of energy to being so tired that it is hard to stay positive and movtivated. My blood counts have been like a roller coaster over these many months. Currentl my WBC is 2.0 -my Platelet count at 113 (has been as low as 98) and my HGB is 11.5 (has been as low as 10.7, but usually is above 12). My lymphocytes stay around 75% (normal is 18-48%) and my Granulocytes are around 20-25% (normal is 48-74%). Knowing tha 10% of the people with HCL never have to be treated, my Doctor has always gelt that I am better off not being treated until it is absolutely necessary. Those that are never treated are usually older (I am 60) and have small spleens, which I do. My splee has never been enlarged. From the beginning my Doctor's chose of treatment is 2-CDA. From all I have read it is the best treatment available. I had blood work done on 1/15/98 and the results are already stated in this memo. I will see my Doctor again in id-Feb. He has told me that if my platelets drop below 100 he will consider putting me in the hospital for the 7 day treatment. Comments from any of you will be greatly appreciated. I have always wanted him to treat my condition. I could not see the benef t in waiting until I was older and in poorer health. However, now that he is talking about actually doing it I confess that I am apprehensive. Should I be? Does it always work? I have not had a bone marrow biopsy since July 1995 and do not know what perce tage of my cell are hairy cells. How important is it to know? This is such a strange disorder and can be very confusing. To treat or not to treat, that is the question. Let me hear some feed back. Thanks!

Fran - 01/22/98 03:51:54
My Email:Frantik@juno.com

Comments:
I enjoyed reading all your comments. My husband has been diagnosed with HCL since 1992. He had 1 year of interferon with good results while on it. As time went on, the counts continued to drop. Now we are at the point where more treatment is necessary. He was supposed to start 2-CDA on Tuesday, January 20 but wound up with an upper respiratory infection. He is on antibiotic now and is scheduled for treatment on Tuesday, January 27. I wonder whether this is the way to go. His counts are WBC 2.1 and P atelets at 65,000. As I have read from some of your responses 2-CDA is not the cure for all. It seems like most of you need another treatment. We are concerned as to how my husband's body will respond to this treatment. It seems like we are going into n uncharted territory. We do have a strong faith which has gotten us this far. My husband has been healthy and strong through this for all these years. We juice carrots and take mega doses of vitamins. If you have any info for us please write.

Fran - 01/22/98 03:50:44
My Email:Frantik@juno.com

Comments:
I enjoyed reading all your comments. My husband has been diagnosed with HCL since 1992. He had 1 year of interferon with good results while on it. As time went on, the counts continued to drop. Now we are at the point where more treatment is necessary. He was supposed to start 2-CDA on Tuesday, January 20 but wound up with an upper respiratory infection. He is on antibiotic now and is scheduled for treatment on Tuesday, January 27. I wonder whether this is the way to go. His counts are WBC 2.1 and P atelets at 65,000. As I have read from some of your responses 2-CDA is not the cure for all. It seems like most of you need another treatment. We are concerned as to how my husband's body will respond to this treatment. It seems like we are going into n uncharted territory. We do have a strong faith which has gotten us this far. My husband has been healthy and strong through this for all these years. We juice carrots and take mega doses of vitamins. If you have any info for us please write.

Mark - 01/16/98 05:04:33
My Email:kaierin@worldnet.att.net

Comments:
Hi: I was diagnosed with HCL last summer. I probably had it for 5 years prior as my blood count has been off that long. In the small town I lived in then they didnt know any better. I went through 2-Cda in August. At this time my blood count is near norma . This is what I am wondering about. My doctor told me to go home and live my life and not worry whether all the HCL is gone or not. I have not had another bone marrow test since diagnosis. Why do you all seem to be having so many tests and worring about being clean. Should I be more worried and insist on another test? E-mail me if you want to talk. Thanks for the forum.

heather pietrowski - 01/14/98 16:37:45
My Email:gazel456@aol.com

Comments:
Hi everyone! Well I just received my bone marrow results and I now only have 2% hairy cells. Now the question is do I just leave it alone now and do no more treatments? I would like to know what some of your opinions are. My doctor thinks maybe we sho ld do another round of 2cda but my doctor in Chicago believes we should just leave it alone.(The doctor in Chicago is an Expert in Hairy Cell). Also does anyone know of ways you can build your immune system up?

heather pietrowski - 01/14/98 16:36:33
My Email:gazel456@aol.com

Comments:
Hi everyone! Well I just received my bone marrow results and I now only have 2% hairy cells. Now the question is do I just leave it alone now and do no more treatments? I would like to know what some of your opinions are. My doctor thinks maybe we sho ld do another round of 2cda but my doctor in Chicago believes we should just leave it alone.(The doctor in Chicago is an Expert in Hairy Cell). Also does anyone know of ways you can build your immune system up?

heather - 01/12/98 18:20:53
My Email:gazel456@aol.com

Comments:
hi there! I am a 26 year old female diagnosed with HCL in August 1997. I had one dose of 2cda August 25-August 30. I was out of work for two monoths. The doctors were afraid of me getting sick expecially since I am a school teacher and am around many s ck children daily. I returned to work October 27th, but only for 1 month. I had a bone marrow biopsy which showed that I still had 10 percent of the hairy cells, so we did another round of the 2cda Dec. 1-5. Now I am currently waiting for my third bon marrow results to see if this second round of treatment has gotten rid of my hairy cells. My main question is- What percentage is considered to be a full remmision and a part remission? Also does anyonoe know what other kinds of treatment are usually u ed after 2 rounds of 2cda? I would like to try something different if there is a next time!! Good luck to all!

Denise Martin - 01/11/98 01:44:25
My Email:denise@foryou.net

Comments:
I am 39 years old. I have been dealing with HCL for 7 years now. Because Iam female it took them a long time to diagnose the HCL. With the use of vitamins and herbs I was able to keep myself out of the hospital and rather healthy till May"95" then I h d Pnuemonia and then diagnosed with HCL. Jan. "96" I recieved 2CDA still had some HCL in my blood, so then in May of "97" had a splenectomy. I will have a bone marrow aspiration in March. But my lab work is finally in normal range. My WBC's got as low s 1.0 and platelets were 40,000 both this way since Dec. of "93". Now my WBC's are 4.5 and Platelets are 260,000 and my Hgb is 13.4. Probably more normal than it was before all of this. I have had a long road but I have learned alot along the way, spec ally about myself. Thank goodness being a single parent my son and I have gotten alot closer because of HCL. A bond that will never be broken! Good luck to all that has to deal with a life threatening disease.

- 01/09/98 16:20:14

Comments:
I was very pleased to read that you are 100% clear:Well done and ggod luck in staying that way: Have you ( or anyone else ) received any information on trying to reduce the possibility of a relapse after 2 CDA or Pentostatin treatment? I am currently half way through my treatment with Pentostatin and ( I presume in common with others) am keen to try and improve my prospects of remaining in remission as much as possible. Any Ideas ? Nigel

mark taubensee - 01/09/98 03:04:51
My Email:the author

Comments:
thanks for all the great comments you all have been leaving. it is really helping others with the disease to get a better understanding of their situation. some send me e-mails about their case which I wish I could share....


Larry Edwards - 01/01/98 12:44:54
My Email:edwardsl@hub.ofthe.net

Comments:
Mark: I was first diagnosed with HCL in 1981, at the age of 28. At that time, HCL was considered 100% terminal. There was a "Guinea Pig" program that was available at M.D. Anderson Hospital, in Houston. I spent many years of giving myself daily injections of Interferon, just to live. About 7 years ago, 2-CDA was available as an experimental treatment. I took it... and it took to me. At least for a while. I had to have a second treatment a little over a year ago. The Dr.'s seem to know less about this disease than I do. I guess it is just too rare. My symptoms developed while I was in the military. Never was sick a day in my life before that. I would like to know more about others that have gone through what we have. Would you care to correspond? Larry Edwards

Nancy - 12/31/97 19:49:36
My Email:old@ksu.edu

Comments:
Mark: I appreciate your journal/diary. Does anyone have information on USA studies relating farming/forages/pesticides with HCL? Two international studies I have found do find an association with these factors and HCL. These studies included large numbers of people which many of the studies o not. Hairy cell leukemia is infrequent in Mexico and has a geographic distribution in American Journal of Hematology 1996;52(4):316-8. and Farming, pesticide use and hariy-call leukemia in Scandinavia Journal of Work Environment Health 1996;22(4):285-93.

Nancy - 12/31/97 19:48:16
My Email:old@ksu.edu

Comments:
Mark: I appreciate your journal/diary. Does anyone have information on USA studies relating farming/forages/pesticides with HCL? Two international studies I have found do find an association with these factors and HCL. These studies included large numbers of people which many of the studies o not. Hairy cell leukemia is infrequent in Mexico and has a geographic distribution in American Journal of Hematology 1996;52(4):316-8. and Farming, pesticide use and hariy-call leukemia in Scandinavia Journal of Work Environment Health 1996;22(4):285-93.

T. McKillop - 12/31/97 19:23:20
My Email:sprig2@juno.com

Comments:
Was diagnosed with HCL in Nov. 1992 during routine physical exam. Hematocrit was 28 but did not have any symphtoms. Placed on 3,000,000 units of interferon three time a week. 2cda had not been approved for use at that time, Within three months blood chemi try was reasonably close to normal ( hematocrit now 41.6, WBC is 4,3) After a year interferon reduced to 2,000,000 units three times a week. Had the usual problems with Interferon for the first few months but have little problems at this time, Passed the 5 year mark last month. Retired now (67 years old) but keep active fishing and hunting, I consider myself very fortunate, if I have to have HCL, at least I have not had many problems with it. Cannot explain my good fortune as I have not always taken good care of myself. Have few horror stories but they are mostly about the physicians involved. I am more than willing to participate in an organization that provides information and assistance to people.

Tom Miller - 12/31/97 18:54:42

Comments:


Tom Miller - 12/31/97 18:53:35

Comments:


Tom Miller - 12/31/97 18:53:31

Comments:


Norman Tessell - 12/29/97 03:31:07
My Email:normant@worldnet.att.net

Comments:
Somewhat relieved to read the diary. At least some of the unknowns of the disease,treatment and the feedback from others with HCL makes this easier to deal ith. No need yet for me to undergo the 2cda at this time. Right now, I'm planning to continue train ng for marathons and have signed up for the Team in Training Rock n' Roll Marathon. Next test is 1/8/98.

Bruce McNaughton - 12/23/97 17:26:03
My Email:mcnaughtonb@grandforks.af.mil

Comments:
I was diagnosed with HCL in Jun 1994. I had 15 treatments with Pentostatin which lasted from Jun 6 (D-Day) 1994 until 19 Dec 1994. I enjoy good health and a bone marrow biopsy in Jul 1997 revealed no indication of disease. My platelets hang around 90; wish they were higher but I'm still on flying status in the Air Force and praising the Lord. I hope things work out for you. I'll hit your page from time to time to check on you. Take Care.

ken finken - 12/19/97 00:01:53
My Email:kenandmj@interpow.net

Comments:
My name is ken. Some people know me as jazz. In October/November of 1990 it was discovered that I had hairy cell leukemia. My spleen was greatly enlarged and the containment of hairy cells was at 96% therein. Removal of my spleen was the agreed upon procedure/treatment at that time. I have since that time taken 250mg penicillin twice daily and had my blood count monitored every 3-4 months. Now,7 years later, my counts indicated that the disease is active enough again to warrant a bone marrow biospy. Biospy 'markers' showed the level of hairy cell to be 30-35% or more. Not immediately life threatening, but...with treatment advancements being what they are now, why wait? The treatment option taken this time: Seven days continuous intravenous infusion of leustatin. I stayed in the hospital for the duration. Outcome to date: I have had no side effects. My counts dropped,as they were supposed to, and are coming back up slowly. I have been following the instructions recommended for chemo therapy patients. One of which is: Cautiously limited and/or no contact with the general public, especially children,for approximately the first two months after treatment so as to prevent unnec ssary sicknesses. Sometime,early next year,I want to have another bone marrow biopsy done to check out the actual effect the leustatin treatment had. I want to know for myself how effective it was. LIFE GOES ON.

Paul Michael Ash - 12/16/97 02:40:34
My Email:ferdnews@psci.net

Comments:
Jimmy said it was a hell of a trip, I think he's right! Good clear descriptive writing is a joy to discover, thank you. pma

- 12/15/97 18:00:21

Comments:
I am a thirty eight year old englishman who has recently been diagnosed with Hairy Cell Leukaemia (note spelling difference if you want to search uk databases!). I am currently undergoing treatment with Pentostatin, which my specialist prefers to 2-CDA as there is a lower liklihood of infections causing difficulties, particularly where like me the blood counts are very low before treatment. The downside of the treatment is that one has to visit the hospital for infusion every two weeks for many months. Aft r two months things seem to be moving in the right direction. I have found your website to be of great interest, and would encourage you to expand it, as there is so little information specifically written about HCL. One page I have found is at www.leukaemia.demon.co.uk/purine2.htm, which while a bit technical in p aces, gives details of the results of major trials of Pentostatin and 2-CDA in England: if nothing else it shows that statistically the prognosis for all of us is reasonably good. Keep up the good work, and good luck with the next marrow test. Nigel

mark - 12/12/97 17:06:49
My Email:webtv

Comments:
hi. this is just a comment from the author. welcome!