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My Email:pankajsethi@netkracker.com

Comments:
My brother-in-law was diagnosed to be suffering from Hairy Cell Leukaemia(HCL) IN Sept.,2000. He had been having fever on and off and an enlarged spleen during the past one year. In May,2000, he was admitted due to high fever and was misdiagnosed to be suffering from Malaria. He responded to the malaria medicine but was finally diagnosed as HCLin Sept. He was advised Cladribine treatment (0.09mg/kg body wt.). The medicine could be arranged in the last week of Sept. Before that his Hb went down to 6.6 and he was transfused 4 units of blood to bring it upto 9. Meanwhile he had swelling in his hand and that was septicaemia, so before administration of the drug that was fianally controlled. Finally on 5th Oct.,2000, he started receiving Cladribine infusion for 7 days. First three days he didn’t had any problem but on 4th day he had feeling of nausea and high fever with shivering from 9th day till 25th day. WBC counts prior to treatment were 2200 and went down to 500 by day 9 and remained at 500 till 28th day. The platelets went down to 16000 and Hb to 6. six units each of RBC and platelets had to be transfused. After 28th day ON GIVING neupogen Injections daily ,WBC increased to 2200. Theareafter he was discharged from hospital and neupogen stopped. The wbc decreased to 1800 in two weeks .however platlets increased to 2,00,000. After that WBC increased to 3400 in one week but platlet count Decreased.After another week WBC count was at 3400 but platlets decreased to 1,20,000. Another blood count report taken 10 days later shows wbc down to 2500 But platlets increased to 1,60,000.However hemoglobin all the while has shown an very Slow increasing trend and is up to 10.5 from 7.9 post treatment. Spleen which was 9.5cm enlargement pre treatment is now down to 1 cm. Lymph node enlargement of 1.5 cm has completely disappeared post treatment. Bone marrow test will be done after one Month. However I am worried about the decrease in WBC from 3400 to 2500. could somebody explain.

- 12/12/00 14:56:02

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I have been very gratified to find this site. I am not posting a name or email however because my husband and I have decided not to tell anyone about his hcl, even our family. We are afraid he will be discriminated against, however subtly, in his job. e don't want him to be treated as a person with a serious illness with people watching for a deterioration. It all started when he had a routine physical exam that revealed low blood counts in 1988. He was referred to a hematologist who suggested a wait and see strategy. After a couple of tests with counts still going down, he had a bone marrow test which resulted in an hcl diag osis in 1989 when he was 43. He was advised that the only treatment was interferon which might help for several years, but the prognosis was poor after that. Splenectomy was another choice, but it reportedly was effective only in a small percentage of pa ients. The doctor was gloomy. He decided to do nothing until absolutely necessary. As his counts continued to fall, and some action was indicated, purely by accident I happened to read about a trial of 2-cda at Scripps in the New York Times. (This was p e-internet so information was impossible to get.) After jumping through hoops, he was accepted into one of the first groups there. His doctor was no help, in fact actively discouraging him. Luckily, he had not had any other treatment, or he would not h ve been able to participate in the trial. He received 2cda as an outpatient at Scripps (Dr. Saven) while we stayed in a hotel in La Jolla. We told our family and employers that we were on vacation. His only side effect was flulike symptoms. He went righ back to work when we returned. He went into full remission which lasted until last year, 1999. when there was evidence of hairy cells in his marrow. His counts had gone down quite a bit but have gone back up to 3.1 wbc (up from 2.0 in 1999) Dr. Saven elt that he should wait as long as possible to take 2cda again since it isn't known how many times it will be effective or for how long. His new doctor, a well known oncologist in our city, has also told him about alternatives such as rituxin. The decis on again has been watchful waiting. His counts are stable, maybe slightly dropping, but he feels good and is quite actively working out. He does have periods of fatigue but they come and go. He has found that accupuncture has greatly helped his energy evels. He also take ayurvedic herbs from Maharishi Ayurveda (called "nectar" and "ambrosia") ever since his diagnosis (as do I !) which I believe have helped his immune system fight the disease. We are also eating more protein these days which seems to h ve helped his fatigue from coming back. His spleen has never been enlarged. For several years before diagnosis, he complained of pain in his breastbone but it doesn't seem to have been from an enlarged spleen. He recently had a suspicious mole removed ut it wasn't malignant. He is of Italian descent (3/4) and his family has a strong history of cancer. I hope the success of his treatment for so long a time, plus the excellent quality of life he continues to have, will encourage some of you who have ju t been diagnosed. We are living with the disease and thank God for the 10 years he has had which would not have been possible if he had developed it any earlier than he did. I think very highly of Dr. Saven and urge everyone to have some contact with hi either as a patient or through their doctor. By the way, the book Second Opinions by Dr. Jerome Groopman has an interesting chapter on hcl. Good luck and love to you all.

Kim - 12/09/00 06:11:06
My Email:manwill1@haaga.com

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Hello, I have been reading comments of other HCL patients since my diagnosis, but been reluctant to say much. It was nice to find this web site during a time of questions and confusion. April 1999 I went in for a check up, it was discovered then that my blood test indicated a problem. It was soon determined that my Spleen was enlarged to a critical state and required removal. A week later the pathology report revealed HCL. I am 38 yrs old, diagnosed when 36. I'm an engineer by profession and have fiv wonderful children, as well as a very supportive wife. When I was in the hospital my wife never left my side for five days. So far I'm still in remission, but even after a year its on my mind and I know on my wives mind as well, in fact I think more so ith her because she lost her father to cancer when she was eight. I will continue to read comments. And want to say Thanks to all of you for your comments, they do help.

Joe C - 11/30/00 17:39:32
My Email:jcjr7@yahoo.com

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Hi! I've been off this site a while, I usally get treatmt every two yrs with 2cda,I believe i have had 4 treatmts, I would like to hear any comments from bl-22 patients, Also my friend in Va Beach had his spleen removed(Chris) and is doing very well, I re ain cautious on having my own spleen removed, though it might work wonders for me, its just that I cant have it put back in!And I have heard from a website on the spleen that many folks complain of colds after spleen removal, cheers! joe c

Barbara Eble - 11/20/00 02:34:05
My Email:eble@haarzell-leukaemie.de

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Hallo, > my name is Barbara, J'm writing you from Germany where I've created 8 years > ago a self-help-group for HCL, the only one in this country. We are actually > 175 people in this group, I am organizing everything including a > weekend-meeting once a year in my town with a specialist for HCL. > Pleace excuse my bad English. I have internet (www.haarzell-leukaemie.de), > e-mail and home page only till this summer and by chance I found your pages > in the internet. What a huge work! > I printed side after side, red them and looked for the many unknown words in > the dictionnairy, a hug work for me also. But thanks for the very personnal > report with family, cats and dancing mice. I thought that I've good > informations about HCL, but reading your pages, I've some questions. It > would be nice to have also a contact to somebody of the supporting group to > know something about the organisation of this group. > > Here is my short story: > In January 1990 I'd the intention to make a trip to Australia, I was in a > good shape but anyway I went to the doctor in Oktober 89 for a check-up. I > had several appointments, something with the blood was wrong buit I was'nt > worried, I felt well and organised my trip. But one day I had to consult a > specialist the same day, some days before x-mas 89. I had allready got my > ticket but I could not go. Why? Some weeks later they told me: HCL. Never > heard. I had for 3 years an interferon therapy (the only therapy in this > time in Germany). After 3 years my blood was ok, no therapy till now. I'd no > informations of HCL, my sister in USA has got the first for me. I found > other patients of HCL through an advertising in a newspaper, we had our > first meeting in 1992, this summer we had the 8th with 90 people. > Today the therapie No. 1 here is also 2CdA for the new cases. I'm very > interested in new reseach reports. The best information we have actually is > the (translated) report of the Leukemia Society of America of 5/97, patients > can understand this. > That's it for today, greetings to America (where are you living, in > California), so count well the votes to have the best president > > Barbara Eble >

ROb MacNichol - 11/07/00 22:54:56
My Email:rmacnichol@ivc.cc.ca.us

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Hi Gerry Stovall! Go to this site (same guy made it) and read about BL-22: http://post.messages.yahoo.com/link/muartist-artist/bbs?.mm=FN&action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=462&.lsrc=http%3a//album.yahoo.com/shop%3fd=ha

Deb Martin - 10/24/00 00:28:22
My Email:dlmartin@machlink.com

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I am a 49 yr old female just starting my second treatment for HCL. I was first diagnosed with HCL in 93 and received 2cda, the 7 day infusion. This time my dr is giving me 2cda for 6 weeks, once a week. I'm thankful for 7 healthy years in between treat ents, and am hopeful this treatment will put me in long term remission, but who knows. I am thankful to serve a "big God" who is in control of every situation.

Gerry Stovall - 10/22/00 16:12:36
My Email:gstovall@ktc.com

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Hi everyone. My son-in-law was diagnosed with HCL 2 years ago in 1998. He was 27 when diagnosed. He underwent chemo several times, but still did not go into remission. Last year his doctor referred him to MD Anderson Hospital in Houston for further tr atment. He has been treated with chemo, antibodies and a drug that he was having to inject 3 times a week. Still he has not gone into remission. His doctor at M.D. Anderson has stopped all treatment and referred him to National Cancer Institute where he is to receive treatment with a new drug that has been quite effective (I don't know the name of it) While he has to wait, he has been unable to work and is quite ill lately. Now he has been advised by NCI that the drug has not yet been approved, so he is still waiting. Does anyone know exactly what the prognosis is for this type of leukemia? He has been told by the doctors that his blood is producing some kind of chemical that is fighting the treatments. Thanks for listening, I guess I just needed to vent, as we are all so frustrated.

Robert Cook - 10/16/00 18:10:32
My Email:robertcook44@hotmail.com

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This comment is for Mary Ann Rouse, who posted about six weeks ago concerning some discomfort under her ribs. My story is in the archives, but, quickly, I'm 45, and I was diagnosed in Feb. '98 with HCL; I had 2-cda via self-administered subcutaneous inje tion (the way to go, in my view), and, after some stay in hospital due to low blood counts and fever, I was declared to be ok, and in recovery. 2 1/2 years later I remain -- so far -- apparently disease free. However, right from the time I was treated, up to now, I have had occasional discomfort on my left side, under my ribs. Sometimes this discomfort is faint, other times it is more pronounce , like cramping. However, my spleen is not enlarged, and has not been since my recoverey. So, whatever is causing this occasional discomfort, it is not neccesarily indicative of a return of HCL. Who knows? It may merely be a result of the spleen havin been enlarged for a time, which might cause a greater sensitivity or tenderness than might be otherwise present. Good luck.

- 10/12/00 00:21:52

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Dennis Giunta - 09/26/00 09:04:34
My Email:dendelion@aol.com

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Thanks for the great story!! I was given the news of my HCL condition at about 2pm yesterday afternoon and here it is 5am in the morning and I'm still on the web..I don't want to read any more about this condition because I'm tired and a bit depressed. I think I'll stop with your story as it really hit h me.. thanks for taking the time. Best regards Dennis

Stephanie - 09/23/00 01:55:04
My Email:nichsteph@aol.com

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My sister-in-law had HCL seven years ago and was treated with 2CDA. She was in remission until about a year ago when her white blood ceel count begain dropping. She again was diagnosed with HCL. She was treated this past July with anouther course of 2CDA, administered exactly as her last course, i.e., continuous infusion over seven days. Seven years ago her side effects were horrific headaches and the need for blood transfusions (I can't remember how many). This time her side effects were not only headach s and the need for a blood transfusion, but also the sudden onset of numbness extending down her entire right side(from her fact to her feet) and her left forearm. About a week after the initial onset of this numbness, which was gradually easing but had n t disappear, her diaphragm became paralyzed in one position, compromising her breathing and requiring oxygen supplementation. She suffered through many tests for indications of stroke and several lumbar punctures in a fruitless search for hairy cell leuk mia in her spinal column. Allof which came up negative. She remained in the hospital for a month. She is now left with some numbness in her arms and pain in her right foot and leg. Her diaphragm remains impaired and her oxygenation remains about 93/95% ith difficulty breathing at slightest exertion or excitement. In addition, unlike the first time she was treated, her current oncologist has her on dapsone (avlosulfon) to prevent pneumonia and has told her she must remain on this for a year. Has anyone ad similar experiences to treatment with 2 CDA? And has anyone been placed on dapsone or a similar antibiotic prophylactically to prevent pneumonia? If so, what side effects have you experienced with dapsone? Currently, she is plagued, as might be expect d I guess, with yeast infections. Thank you in advance for sharing your experiences. Stephanie

Margo - 09/18/00 00:46:00
My Email:alderson@5meadclose.freeserve.co.uk

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I have achieved remission using Pentostatin. A course of 6 treatments over May to Sept. major problem was skin reactions which needed steroid Prednisolone and piriton to be administered with the chemo. Sun sensitivity also a problem. The first few treatme t were the worst as white count very low and neutophils at 0.4 even after three weeks. Neupogen injections, sub/cutaneous and self-administered allowed me to continue with treatment.Skin rash and allergic reaction to allopurinol was worst side effect. Sic ness fairly well controlled by drug Ondansetron, fatigue and loss of appetite usually only lasted 4-5 days each treatment. Now, blood in circulation and bone marrow free from malignant cells. Feel fine and returning to work after 4 months absence. I reco mend Pentostatin if you want to still be able to live fairly normally whilst having treatment.

Michele Counihan - 09/13/00 21:35:45
My Email:mjcoun@ix.netcom.com

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I am a 50 year old woman (mother of two teenage sons) who was diagnosed in April, 2000 with HCL and treated in May, 2000 with a 7 day course of continuous infusion 2CDA. Two weeks ago, in early September, my bone marrow biopsy was "clean". I'm going to s e my oncologist/hematologist tomorrow, Sept 14 for my follow up visit. I want to know exactly what "clean" means. I hope I had a complete response to the 2CDA and never have to deal with this disease again, but I have done enough research to know that thi tends to be a chronic disease. Still, Dr. Cooper (my oncologist) tells me that it is very manageable. I was so grateful to see all these comments on this site. When I first was diagnosed I only saw Mark's diary and clung to that for hope. I also have an ntercurrent anxiety disorder which complicates my life. I would welcome correspondence with anyone who would like to contact me. I live in upstate New York - about 70 miles north of New York City. Michele

Mary Anne Rouse - 09/01/00 01:16:38
My Email:Rrousefam@aol.com

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Thanks for answering, Wanda. I wish you all the best, and complete recovery. I'll let you know how I make out at the end of Sept. Happy Birthday. Make it a great celebration of life. Write me off-line if you'd like. I love to hear where people are. (I'm Rochester NY) Take care.

Mary Anne Rouse - 09/01/00 01:16:35
My Email:Rrousefam@aol.com

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Thanks for answering, Wanda. I wish you all the best, and complete recovery. I'll let you know how I make out at the end of Sept. Happy Birthday. Make it a great celebration of life. Write me off-line if you'd like. I love to hear where people are. (I'm Rochester NY) Take care.

Wanda Long - 08/31/00 15:40:41
My Email:wanda@like-duh.com

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Mary Anne - I don't mind one bit to tell my age - I turn 60 next Wednesday, September 6, 2000. My spleen was removed when I was 28 years old, and my doctor thinks my HCL started occurring again in my early 50s, right after I moved from my home town to be closer to my children, but that I didn't know it for three or four years before the time it was found when I had the blood clot. I remarried in February of this year, we bought a house and I moved to another town that is the same town my daughter and gra dchilden live in. So all of this is very happy for me, but of course a change - and the HCL occurred again during this time, right after I had been put on a 6-month check-up schedule because I had been doing so well - apparently, HCL doesn't like change ery much (in me anyway).

Mary Anne - 08/31/00 14:54:57
My Email:Rrousefam@aol.com

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Wow, Wanda, that's some story! May I ask your age? I'm 52, and still hoping for complete remission, but I've been noticing some discomfort (not exactly pain) in my left adb/ribs area, which concerns me. I have been through the most stressful periods of my life (separation after 28 years) which also concerns me. I go for re-check later this month. Your age? (if you don't mind).

Wanda Long - 08/29/00 18:12:29
My Email:wanda@like-duh.com

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It is nice to have a site where one can comment to people who know what one is talking about. I just finished my second treatment of 2CdA the end of July, 2000. My first treatment was in July, 1997. My HCL was found in January, 1997, when I was at the octor's for a blood clot in my leg. He called the same evening saying that my white count was 31,000 and sent me to a blood specialist, who diagnosed HCL, but I did not have to be treated until July. I do not have a spleen, it was removed in 1968 becaus it was enlarged three times its size with two little ones growing off of the big one. My doctor thinks that could have possibly been when I first had HCL, and that my spleen removal could have put it in remission about 24 years until I reached my 50s. A yway, after the first treatment of 2CdA, I thought I was in the 80% for complete remission from HCL, and I passed the two-year mark being free, but unfortunately I am in the 20% with an HCL relapse. I had just been released for 6-month check-ups in Febru ry, but in July, 2000 I had a blood test because of pain that I was having around my ribs. My PCP doctor said I should check with my specialist because I was anemic and that they would send the results of my blood test to my specialist. For some reason t took them 2 1/2 weeks to get my blood test to my specialist. My specialist called me into his office immediately upon receiving it, and by that time my blood was almost 90% hairy cell population - and instead of going home from the doctor's, I had to go immediately to the hospital for four units of blood so I could start chemo. During the seven days of treatment - which had to be at the hospital so my blood could be watched - my life was sustained by transfusions of blood and platelets. My doctor doesn t know how I was up walking around for the two weeks before he received the blood tests. So I am in the process again of waiting for my blood to become as normal as it can. The first bout with HCL, my blood counts were way too high until I had chemo, th s time they were way too low. The hospital I was just released from had an HCL counselor who came and talked to me. As usual, the exact cause of HCL is unknown, but she said that there seemed to be some indication that stress could be a factor in "rousi g up" HCL. HCL doesn't know the difference between "good" stress and "bad" stress, it just knows that the body is stressed regardless of whether it's because one is happy, sad, or tired. Maybe it's something to think about. But, I have found that both f my HCL episodes have had different symptoms, and I still have hope that this time I can make it into the 80% where remission is a long time.

Madelaine - 08/29/00 15:34:44
My Email:e_mbefus@junction.net

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Hi everyone. Just came from my 6-month check-up. My bone marrow is totally negative, no HCL to be found, and my blood work shows low normal counts. Still struggling with fatigue a bit. I had 2CDA by subcutaneous injection in Nov/Dec 99. Sure would rec mmend the injection method over the IV or continuous drip. So much easier to live with and by my result, just as effective. Cheers to everyone.

Rob - 08/07/00 02:10:04
My Email:rmacnichol@ivc.cc.ca.us

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Hi. Most of us go to this site: http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1

Mary Anne Rouse - 08/06/00 20:52:29
My Email:Rrousefam@aol.com

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Hello, fellow HCL patients?? Is anyone out there? Just checking the website.

Natalie and Jo - 07/10/00 09:47:37

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This man has made an amazing and very brave recovery. Very well done old chap!

Shirley - 06/27/00 17:54:39
My Email:ray.shirleymangrum@inetmail.att.net

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It has been two years, as of June 15th, since I had my one (and hopefully only) treatment of 2CDA. I am checked out by my doctor every 4 months and had my visit with him yesterday. I just got the results of my blood work and am pleased that I continue to stay within the normal ranges. WBC: 10.4, PLT: 300,000, HGB: 13.0, HCT 37.3..no enlargement of my spleen. Everything looks good and my doctor is pleased. I will see him again in October and next year it will be only twice a year. I keep up with everyt ing on this site, as there seems to be a lot of new things on the horizon regarding HCL. This is a strange disorder and it affects each on of us so differently. If I ever have to have treatment again my doctor says that he would not use 2CDA, but would se an alternative that would not be as hard on the bone marrow. Many of you have gone through the 2CDA more than once. Did your doctors every suggest any other option? 2CDA seems to be the most effective so I don't know if I would want to take another r ute. Anyway, I this stage of the game I am just thankful for my recent blood results. My thoughts and prayers are with you all. Shirley

robin - 06/27/00 03:03:02
My Email:RMatth6721@aol.com

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My husband was diagnosed with HCL this past month.He just got out of the hospital after a week od treatment with 2CDA. He did very well while in the hospital. No side effects. However he developed a fever after being hom for three days and was admitted ba k in. He was put on an IV of antibiotics which they discontinued because all blood tests came back negative for infection. The main problem now is he has a very severe headache which is knocking him out. They put him on Percusec and it seems to help a little. He also has a rash on his bottom. The question we have is there anyone out there who has experienced this severe he dache. He also says It hurts to touch the top of his head. Any help will be appreciated. I'm so glad to have people to talk to.

Robin - 06/27/00 02:50:18

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Andreas - 06/17/00 13:07:48
My Email:ariescy@yahoo.com

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If you are a patient or you know a patient from the UK or from any other country (excluding the USA and Canada) please get in touch with me. I want to find out a good doctor and hospital for my treatment and I want your experience on that. Thanks a lot, Andreas.

Rob - 06/12/00 19:46:02

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Hi Maryann, Because I'm not a doctor, and especially one who saw tests, and such wich your doctor saw, I have no idea. Strictly from a logical bases I'd say yeah, perhaps not being treated for infection caused the problem, but who knows. I know this, it seems logical to treat cancer ASAP. yet, you see with Saven and some others, they just watch HCL until a certain point. I know with some non-aggressive prostrate cancers they also "just watch." So simple logic doesn't always yield the c rrect treatment. This is why I advised that you contact Saven. Only some one like him talking to your doctor is really qualified to say. I hope everything is Okay with you both.

Maryann - 06/12/00 17:45:05
My Email:dezzim@labs.wyeth.com

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Rob You are an excellent source of information. I probably know more about HCL than my husbands doctor does. I researched alot and THANKS to this support group and people like yourself every little bit of information HELPS. Again I'm sure if Dr. Saven was t eating my husband this would not have happened. One question: My husbands other physician treated him with antibiotics and Neupogen the day after he finished his chem which helped fight off any infection and bring up his WBC and this recent physician di not treat him with these. My opinion is that this is why he got so sick and picked up somekind of infection. I'm not trying to play doctor, but How do you feel about this??? Thanks Again, Maryann

Rob - 06/11/00 03:21:11

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Hi Doug, I don't know how this works, but I asked Saven (my doctor at Scripps) if the counts dropped each time one is treated. He said no. He probably would be more accurate if he'd said not always? Anyway, in the archives there are two ladies, one is 20-someth ng the other, I think 60-something and after their second or third treatment their counts went way up! I have read here where some folks WBCs stay at .8, one lady's went up to 7 (that's normal!) My wife whose perfectly healthy has a wbc of 6. Mine went to 3.9 and have bounced around for a couple of years...down to 2.1 I got sick, and up to 3.7, down to 2. and have hung around 3.4 for the past year or so. Since I've been eating more food (protein) I feel much better, but sometime back I was really trashed. Perhpas not eating enough protein and working out was too much for my whacked blood counts?

Andreas - 06/10/00 14:40:16
My Email:ariescy@yahoo.com

Comments:
This site gave the information I needed for HCL but most importantly communication with other patients. Thank you for the creation of this link to the world which gives a lot of courage.

Doug - 06/09/00 22:52:36
My Email:drutz@planetcable.net

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Hi Rob. My blood count being at 1.8 doesn't really bother me that much. Yes I do seem to bruise easier and it takes me a little longer to heal cuts and scrapes, but I really haven't noticed any fatigue out of the ordinary. When I work out I try to do what I used to (and usually do) before I was diagnosed. I drink a carb shake(I make it at home) after I work out and that seems to alliviate any soreness I might have. It works. When I went for my 1 year check-up, I thought my counts would have been thru the roof. I felt great. I was really depressed when they told me what they really were. I go back in next week to check them again. Cross your fingers.....

Rob - 06/09/00 16:42:54

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Hi Doug. Funny you should mention eating.... I usually have 2-3 cups of coffee on the way to work. When I get to work I eat brocolli, cauliflower, carrots (slightly cooked, OJ, Soy juice, milk, yogurt... this is all okay, but to tell you the truth I don t feel good or full until I eat something meaty, eggs, spegetti, chicken etc. I eat three full meals now, a salad, some wine. I may eat Italian, Japanese, American dinner...and I feel much better now than before. But I don't do any vitamines except a o e-a-day, and E, and OJ. And lately, I haven't had those reguarly. I don't think there's anything "PROVEN" to help, but who knows... one lady here (see archives) says he wbc are way up because she drinks some sort of tea..I forget the name (try the last -3 archive files. I just don't think it works like that, beyond a generally good diet of real food, protein, etc. How do you feel with wbc's at 1.8? Mine are 3.4 or so and I can seem to get rundown fairly easily with my workouts...

Doug - 06/09/00 01:05:29
My Email:drutz@planetcable.net

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Hi again. First, to answer you Mary Anne, when I was in rehab, they did blood tests on me almost daily. I could set my watch to them taking a sample(must be 5:30am - the vampire is here). I stayed in rehab for 3 weeks and while there they tested me for ev rything. Stroke, Bell's palsey, and other afflictions were ruled out. I was somewhat of a mystery to them. I do however have a lesion in my brain that "has become smaller and less extensive". One thing that seems odd is that I had a bad cold(sinus infecti n maybe) for several days before I got numb. When I noticed the something was wrong, my cold was gone. It disappeared. Does Bell's palsey only affect your face or your limbs as well? I don't know much about it. To Rob: When you say that your counts go up y not working out or running, have they gone up by eating anything special? Nutritional intake is a big concern that I have. I figure the better you eat, the better you'll feel. I eat 5-6 small meals a day. Keeps my metabolism up. I have more energy eatin this way. Feeling better is everything. I'm rambling. I have too many questions........ sorry.

Rob - 06/08/00 16:22:58

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Doug you may have done this, but try resting a couple of weeks before you see the Dr. Resting causes my blood counts to rize. I also feel better. I tend to over do it with working out and running...and I really crash when i do that. I have no idea if t's the HCL or something opportunistic...like old age, some viral thing I've had for a decade, etc., etc.

Mary Anne Rouse - 06/08/00 13:40:32
My Email:Rrousefam@aol.com

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To Doug Rutz: Just read your experience. Very unusual...this sounds so simplistic, but did your drs. rule out Bell's Palsy? It certainly sounds like Bell's--and may have been incidental to your diagnosis of HCL. Speculating...did they rule that out?

Doug Rutz - 06/08/00 01:50:52
My Email:drutz@planetcable.net

Comments:
Hi everyone. I am a 45 yr old father of three boys. I was diagnosed mid May '99 and was treated with 2CDA in June. My story began at the end of March, tho. The night of the NCAA final, I couldn't stay awake to watch the game. The next morning I remember c mmenting to my wife that the right side of my face was numb. I couldn't feel it when I shaved. She made an appointment with my family doctor that night(Tuesday). He examined me and then sent me to a neurologist(Friday). I planned to work until then. Wrong By Thursday, I could hardly walk. Everything on my right side started to fail. Vision, hearing, everything! I couldn't even talk. People couldn't understand me. The neurologist examined me and I was admitted immediately. The first thing he did was give m a spinal tap. If you are given a spinal tap - DON'T SIT UP. Don't even move. I had a headache for a week. I had to eat lying flat. If anyone is given one, DON'T MOVE!!! I was transferred to a Rehab facility. Still had the headache. They finally gave me a 'blood patch'. This procedure doesn't hurt at all, and it works. I rehabbed(is that a word) until I was finally diagnosed with HCL. I was in the hospital a week with the 2CDA. I received a continuous drip for 7 days. 7 bags - 7 days. Nupogen shots(2 weeks and Alopurinol(sp) to follow afterwards. I didn't return to work until mid-July. I thought I was thru with hospital visits until I found a lump in my groin. After more dr. visits I was scheduled for 'exploratory' surgery late Nov. The doctors I had seen id not know if it were a hernia or lymphoma. I was hoping for a hernia. Thank God I was right. At my one year check-up my RBC and plateletts were normal, but my WBC was 1.8. They did a bone marrow biopsy and a cat scan on me and both were normal. I know t at it takes awile for the WBC to improve, but c'mon. If anyone knows a way to improve the WBC, I would like to know. I've been trying to eat right, take vitamins, and try to workout 3-4 times a week at the Y. Seems like I'm doing something wrong. Until I ind a better mouse trap, I'm gonna keep running that play 'til I get it right. My face is still partially numb, even after a year. If anyone has had a similar experience or has heard of a way to regain feeling, please email me. Finally, I would like to sa that I think this site is wonderful. It gives us hope and lets everyone know that they are not alone in their fight against this monster. I'm not gonna let it beat me, don't you neither. God bless and good health to all.

Rob - 06/08/00 01:45:19
My Email:rmacnichol@ivc.cc.ca.us

Comments:
I'm glad you contacted Saven anyway. Perhaps he can tell your doctor something (like go to school and study medicine!). At least I think Doctor Saven would ask about your husband, what his doctor is doing, and say (YES!-do that.) or (NO!-don't do that). I think you did the right thing (contacting Saven for your own peace of mind) because now your Doctor knows who to contact and he knows that YOU know who to contact, also. Perhaps this will pressure your Doctor to study-up on HCL a little more.

Maryann - 06/07/00 16:07:24

Comments:
I had wrote back on May 12th at that time my husband had a 106 temp he was running fever for three weeks ranging 104. The Infectious Disease physicains were saying he had an infection which they could not find so they druged him up with every type of ant biotic one was called AnfiTerrible he was on this for over a week he was getting terrible shakes so finally a nurse pulled it and then contacted the physicians later, now his lungs were builiding up with fluid and he had to have oxygen. He was very very ad we not exspect him to make it I was up the hospital 24 hours except to go home and take a shower, one night when he was in CCU I slept on a sleeping bag I would not leave his side because I felt they did not know what they were doing. I finally asked is hematologist to contact Dr. Saven and believe it or not he had no idea who he was does that tell you something. The first time he had 2CDA 3 years ago he had a WONDERFUL physician but he is out of practice and my husband was fine, he had no problem. hat this physician did different was 1-gave him steroids with the 2CDA and 2-the first physician when he finished the 2CDA immediately had him on Biaxin and neupogen the Biaxin prevented any infections and then neupogen brought up his WBC so he could figh off any infection. Boy what a mess.....I'm so sorry I did not fly him out to Scripps Clinic with Dr. Saven and have him take care of him. These idiots now have him on 9 different medications 2 strong antibiotics and myambutol for TB since they have no idea what he had...I pray that no one has to go through this the way he did. Rob I know you read everything and I appreciate your help and suggestion. Yes I did finally call Dr. Saven and they left me a message that they did speak to our physician but i was after the fact. Our physician should of been in contact with Dr. Saven from the beginning.

Maryann - 06/07/00 16:06:14

Comments:
Da Spleen? I think it doesn't work for some people. For example my spleen is normal? But I don't know about that. When I got treated with 2cd my doc said my spleen was going down! I reminded him that the cat scans showed it was normal (which he told e!!). I thought is this guy losing his marbles? My spleen is normal but he just said it was going down...duh? I asked him about htat. he said eventhough it's normal in size, it is still filtering out the bad cells. When I got treated with 2cda is didn't go down much in size but my platlets shot up high within 3-4 days. he said that was the spleen reacting to 2 da. Anyway, thinking about that I wonder if removal is warrented for those whose spleen doesn't seem to become enlarged? I don't know. I'm glad you're doing well. Hang in there. As for the other question you asked about monoclonal antibodies you are talking about Retuxain (aka Retuximab) Zevlon, and BL-22. I think the last two are radio active (radio-immunotheropy) while Retuxin is not.

Joe Cancemi,Jr - 06/06/00 13:41:47
My Email:jcjr@worldspy.net

Comments:
Just thought I would to a little update. I had my 4th round of 2cda(in 8 years,approx every 2 years)in july of 1999. My platelets & wbc remain low but no problems,my hemoglobin is about 13.8(at the low range of normal). I feel pretty good,can play tennis jog a little(1/2 mile working up to a mile). anybody out there done or heard from anyone who tried the monoclonal antibody(I think) that the National Institue of Health was promoting in Bethesda, MD? It supposely only attacked the hairy cells,sort of lik a magic bullet. I will probably try that next time if required since i have had four doses of 2cda! Also from what i have read on the web, hod on to your spleen if you can as a side effect of losing one can be catching a lot more colds(which was one of m major problems before being diagnosed with hcl, after 2cda, the number of colds dropped dramatically due I guess to getting rid of all the hairy cells that were clogging up my immune system. Its amazing to me how well the human body works! Its best to po t on this site as you have a comment as it may help others naturally, but my personal email is jcjr@worldspy.net

- 06/03/00 06:26:01

Comments:

Rob MacNichol - 05/24/00 01:14:30
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Hi Bartly, One source is the Scripps clinic. There is a Dr. Saven there who will confirm this. Try Mark's other sites: http://geocities.datacellar.net/HotSprings/Spa/1350/hclsummary.html and: http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1

Bartley O'Dwyer - 05/18/00 03:02:28
My Email:bartleyodwyer@hotmail.com

Comments:
Hello all. Very interesting and informative stuff on this site. My Dad turned 65 this past November and was diagnosed almost three years ago with HCL. His counts were very low at the time and he was experiencing the normal HCL symptoms: fatigue shortn ss of breath etc. He was admitted and treated with 2CDA immediately with absolutely no side affects. He was shortly out of the hospital, returned to work and is now retired living life well. However, his counts have been dropping regularly over the last few months and a marrow biopsy is scheduled for two weeks from now. Two questions for the group: After a patient has been treated with 2CDA is it possible to then be treated with Pentostatin, Retuxan, or Intron A? I read on this board that every time 2CDA is used that the bone marrow is adversely affected. I would like to know the source of that informtion if anyone has it available and if anyone has learned of it in their own research. ANy information would be g ateful.

mark - 05/17/00 20:13:42
My Email:dipalmadesign@aol.com

Comments:
Hi all fellow HCLers out there. I am a 40 year old man living and working in NYC. I was diagnosed in July '99 but had been showing low counts for about 2years before that. No doctor was able to pick up the HCL diagnosis until I finally went to Memorial Sl an Kettering (boy are they expensive!). It was actually a bit of a relief after hearing all the horrible alternatives that could be responsible for the kind of counts I had. Well, here it is almost a year later (3 years since my first low counts were dete ted) and still I show no outward symptoms. I have gotten my oncologist to agree to monitor my counts on a quarterly basis and watch for any changes (bruising, spleen inflammation) that would indicate a progression in the disease. I want to avoid treatment as long as reasonably possible. As it stands, my counts continue to hold within a narrow range, although they are low: WBC 1.8; Platelets 58; Netros 1.0; RBC normal. I am doing my best to combat the disease in every way I know how: high doses of antioxida t vitamins; good diet (lots of organic veggies and fruits); exercise; I took Essiac tea regularly for six months (I plan to start again soon); I am also seeing a Kinesiologist who works on my immunity twice a month. Does anybody know of anyone who went th s long without a change in blood counts? I know it's a slowly progressing disease, but I am curious to know how unusual it is for someone to go this long without symptoms. Good health to all of you. Let's continue to hope for a cure to all cancer in our l fetimes.

Rob again - 05/14/00 00:33:05

Comments:
Here's Saven's secretary, call this number: (858)554-9489 he/she knows how to contact him, and where he is, and what you should do. FAX: (858)554-8946

Rob - 05/12/00 21:46:35
My Email:rmacnichol@ivc.c.ca.us

Comments:
Call Saven anyway, talk to a nurse or someone and perhaps Saven will call your doctor, or have your doctor contact Saven. As for the problems now? I think it would be best for you to contact Scripps and ask them for advice on this.

Maryann - 05/12/00 18:34:15
My Email:dezzim@labs.wyeth.com

Comments:
My husband had HCL 3 years and had 2CDA he had a wonderful doctor that closed is practice so he had to go to someone else. He started HCL on May 1 but this DR added a steroid with the chemo. My husband this time broke out with a fever this past Monday o 101 and went to the doctor the doctor did not seem concerned plus and gave me neuprogen his physician that he had 3 years gave him the neuprogen to start the day after he finished his chemo along with an antibiotic. Now I am totally upset he has somekin of infection his Temp on Wedesday was 106 they have him on all kinds of antibiotics and nothing is working he is all broken out with somekind of rash or pimples and this doctor is telling me this is normal but this did not happen to him before. I feel t at something went wrong. I need help from someone out there. I wanted to Call Dr. Saven but I know he will not speak to me only physicians. Any suggestions, he is not getting better Thanks Maryann

Susan May - 05/08/00 16:27:57
My Email:sdetjmay@cs.com

Comments:
I want to commend everyone on sharing their stories! My father is 62 and just diagnosed with HCL. He just finished a week of chemo and was feeling very discouraged. He'd wake up in the morning feeling terrific, but by the time he showered and shaved he is exhausted. He doesn't have a computer and doesn't know about sites like this. I have been printing out some of your stories and sharing them with him. Your stories have given him hope, and keep him going. THANK YOU. I'm sure you can understand what this means to him and our family.

Colin Mann - 04/22/00 18:48:33
My Email:MannieCJ@aol.com

Comments:
I have found visiting this site very useful so I thought I should make my own contribution in return at last. I am a 41 year old Englishman, married with two young children and living in Croydon. I was diagnosed with HCL in late October 1999. Like most of us I had never heard of it and the mention of the word leukaemia induced fear. But as the doctor said "it is best not to have leukaemia but if you do get it HCL is one of the better ones to have" Throughout the preceeding months, possibly years, I had been getting frequent infections, bruising easily, feeling very tired and (unknown to me) getting an enlarged sp een. When I began to get chestpains and breathlessness as well I went to our excellent local doctor thinking I might have heart trouble. He suspected something more complicated and referred me immediately to our local NHS hospital, Mayday. Luckily they ha e a highly regarded haemotology department. They almost "kidnapped" me on my trolley away from the heart specialists on spotting the blood abnormality! My blood counts were very low. 3.0 Haemoglobin, 6 platelets and 0.1 neutrophils. I didn't record the BC figure. A bone marrow aspiration and trephine was performed and HCL diagnosed. I spent 23 days in hospital receiving numerous blood and platelet transfusions, IV anti-biotics, a restricted diet and starting a course of self administered GCSF (Neupogen) and interferon-alpha (Roferon-A) injections. Unfortunately on release I developed a strangulated hernia so back in I went after just three days freedom. After a lot of anguished debate between the surgeons and haemotologists I received an operation backe by substantial blood and platelet transfusions. After leaving Mayday again for the next 4 months I gave myself GCSF and Interferon injections. I was regularly monitored at the friendly daycare unit in the hospital. The blood counts improved markedly with hiccups due to an infection and a reduced GCSF f equency. Interferon, and to some extent GCSF, had unpleasant side effects but they do seem to work for me so it was worth putting up with. In March I was admitted to Mayday for a 7 day continuous infusion of 2CDA (Cladribine). In this part of the world t is standard practice to administer GCSF/Interferon for a while before going for 2CDA treatment. Pentostain is not often used. My 2CDA course had to be stopped as a precaution after 2 days as I developed a serious bowel obstruction. The medical team do bt if this was anything but a coincidence but needed to play safe. With my agreement the remaining 5 days were administered after the intestinal agonies were cleared up. I was discharged on 5 April and am now recuperating at home. I have Septrin, Allopuri ol and Corsdadyl to use for the time being. The counts are now 14.7 Hb, 129 platelets, 1.2 WBC and 0.9 neutrophils. Hopefully they will start to rise more rapidly soon so I can get back to work and rejoin my social cricket team for the summer season! The upport of family and friends plus having something to aim for in the future helps get through the darker days of this illness. I'm grateful to everyone who has input to the HCL website as it is very helpful. I hope you all have improving health over the c ming years. Keep up the good work.

Rob MacNichol - 04/17/00 22:19:02
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Hi Aine! Keep us posted on what's happening, okay?

Aine Callington - 04/13/00 16:43:37
My Email:aine_s@hotmail.com

Comments:
Hi Rob, Thank you very much for this information - it is really useful and I will start some investigations straight away. Regards, Áine

Rob MacNichol - 04/12/00 19:15:57
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Try reading this: http://geocities.datacellar.net/HotSprings/Spa/1350/hclsummary.html

Aine Callington - 04/12/00 09:12:26
My Email:aine_s@hotmail.com

Comments:
Hi, I'm posting this message on behalf of my cousin who is suffering from HCL - he was initially taken ill last July and has only recently started to receive treatment (I'm not sure which one). Unfortunately he has rejected the treatment and his doctor doesn' hold much hope. He lives in Ireland and has been in hospital now since the 4th of January and is really suffering. Does anyone have any suggestions as to what we could do - I just feel so useless and any hope or referrals would be welcome.

ruud schenning - 04/08/00 20:12:51
My Email:birgit.ruud@hetnet.nl

Comments:
Hi, I am impressed! What a site. I was looking for information about HCL. My father was told he is suffering from HCL a few days ago. I 've downloaded your information and links. I will read them first, and then I probably will get back to you. thanks! Re ards, Ruud Schenning

Dave Thomas - 04/06/00 13:06:23
My Email:jusdiver@aol.com

Comments:
It is now one full year since I walked out of the hospital following a months stay to diagnosis, treat with 2CDA and finally allow the bone marrow to recover from the chemo to treat my HCL. I began a new job a few months later and I have my blood tested q arterly. So far everything is great, counts are in the normal range, I feel great and other than about 25 pounds added since my hospital release, my wife says I look great compared to going into the hospital. I continue to remain optimistic about the long term outlook but I have learned through my experience not to take life for granted. I try to enjoy every day as much as I can. I expect that a year from now I will write a similar note celebrating two year of remission.

J.V. Price - 03/31/00 05:33:55
My Email:prices@freewwweb.com

Comments:
I've now seen a number of posts describing a variety of treatment options and methods. I'm so glad to hear all the stories. It becomes a question though of which treatment is really best because it seems that rarely do two people respond the same way to the same treatment. I'll relate mine and let you consider this one. I was diagonsed in late May 99. My counts were very low. WBC: .4, RBC :.8, etc. Six transfusions got me to the point of being able to take chemo. When we discovered my veins couldn't accomodate another needle, a doctor said there was no reason I cou dn't do sub-cutaneous injection. I was released, sent home with 14 3.75ml injects of Leustatin (2-CDA). For 7 days I gave myself 2 shots in the legs. Seemed to work great. I sure felt good. By August my counts were improving. RBC and platelets were a proaching the normal range and WBC was at 70%, about 3.5. I tolerated the treatment fantastically: no side effects to speak of, I was at home, I felt good-- much better than how I felt the previous spring before I was diagnosed; and when I thought I jus a naturally deteriorating 54 year old male. Come September, we did a 2nd bone marrow biopsy, thinking (hoping) this would show a completely clear marrow. Instead we saw "less that 3%". This was certainly better than the over 90% at first diagnosis. So we did another round of 2-CDA shots. This t eatment was hardly any inconvenience at all. Just shoot myself and go on with my normal activities for the day. The effect, of course, was to lower my counts (WBC fell to about 2.0, about 40% in my terms), but they later improved. By the end of the year I was up at the 90% level (Reds and platelets were in normal range). In January we did a third bone marrow biopsy. This the time they reported that less than .1% of the cells had "folded nuclei" that could possible become HCL. Now it seems it's coming back. For the past two weeks I've felt a good deal of "pressure" or fullness in my abdomen. I'm almost certain it's my spleen enlarging. Also tired at end of day. My counts last week showed a decline. WBC are now back down at 50 about 2.5. RBC is inching below normal for first time since September. I have an appointment in 3 weeks. My questions to the group: (1) How low has anyones doctor allowed the counts to go before starting a another round of chemo? (2) What have others experienced in the growth rate of HCL? i.e, how fast have the counts declined. In my case, I'm losing .2 WBC every week. At this rate I'll be neutropenic in 7 weeks. (3) Any other thoughts? What do you think? Cheers J.V.

Rob MacNichol - 03/30/00 03:38:25
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Hi Gloria, I assume you have a doctor that knows something about HCL? Ask him for advice on this. I don't know if the HCL is the problem or being 77 is. Your doctor would know this better than any of us. HCL for us 30-40-50 somethings with a few 60's out there runs from a "light" experience to a hell of a battle, depending on who you talk to. But generally it is actually not life threatening itself, thanks to treatments. For your father to lose that much weight, I suspect there's more going on than CL. He may be depressed being alone, he may be simply suffering from old age ... it does get to us sooner or later. You, there, are a better judge along with a doctor's advice. If you read this site and the other one at http://messages.yah o.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1 ... I think you'll find some answers. If not I'm sure we can help with some of your questions.

Gloria Jones - 03/29/00 21:00:27
My Email:gjones@unex.ucla.edu

Comments:
Hello! My name is Gloria and I just found out yesterday that my father, a 77 year old black male, has HCL. My step-mother died 2 years ago and he is now alone in the desert. Should I make arrangements to bring him to live with me or will he be alright iving alone. I don't know how long he has had the disease but recently, he has developed a cough and has gone from 135 lbs down to 123. Any advice?

sue - 03/22/00 22:52:10
My Email:KEVIN265@webtv.net

Comments:
Hi everyone, I have some good news about my husband Kevin. He had his usual Dr. appointment and for the first time in weeks his platelet count jumped from 25 to 32 on it's own, with no transfusion. He'll have the first bone marrow biopsy since this starte tomorrow. I'm very anxious about this, at his appointment today, the Dr. did say that the recent blood work did show hairy-cells being present. They haven't shown till now, in his periphal blood. Should this make me worry? Well, I'm just thankful to have this website to turn to when I have concerns, all of you have been a great help and I welcome any advice that any of you have. Kevin is verypositive and I know from reading your stories that is very important to a full recovary. God Bless and Thanks for t e support. Susan

Stuart Weitz - 03/22/00 20:19:45
My Email:stuart.weitz@pfsfhq.com

Comments:
I was diagnosed in October with HCL and have gone through 5 months of treatment with pentostatin. I just learned the results of my bone marrow biopsy, which were that no HCL was detected! My treatment with pentostatin was very easy. The only side effec s were a little nausea and some insomnia. Fortunately, I have not gotten ill and survived the winter season in an office where everyone around me got sick, except me. My blood counts started to improve as soon as the treatment began, and I expect that t ey'll improve even more once I have my last treatment in 2 weeks!

Lou DiFinizio - 03/22/00 18:25:56
My Email:lou.difinizio@qntm.com

Comments:
Hi All !! I'm writing to tell you that today is my 8 year anniversary of my 2CDA treatment. I was one of the first to receive the treatment outside of the origional Lab tests conducted in CA. I'm delighted to report that I'm still in remission after th one treatment. My most recent Doctor visit showed my blood chemistry to be at an all time high (post HCL). I hope your experiences are as positive as mine. Good fortune and the Best of Health to you all. Lou,

marianne - 03/18/00 23:44:35
My Email:jlarsen@Stormfront.com

Comments:
My name is Marianne and I am 39 years old. I have read from your web site for a year now and have found it to be very helpful and encouraging. I started to write my own story to place on the internet a year ago, but then changed my mind. After much thought and consideration decided to write, in hopes that it might give others encouragement such as yours has for me. I was diagnosed with HCL in Jan. '99. I had been experiencing bruising for 1-1/2 to 2 years. I thought it was odd but never mentioned it to anyone. I also experienced a burning pain in my left ribs for months. It was especially bad at night after I had eaten dinner. I asked my doctor about the pains, she seemed to either be too busy or not wanting to be bothered by it and told me it was just inflamed nerves. She prescribed Advil for the pain, which I never took (thank goodness). The pain intensified and after a couple of months I could feel a large mass in my left abdomen. I knew something was wrong but must've been in denial because I kept thinking it would go away. It never did and I ended up going back to the doctor. She kind of chided me for not taking her advice, but set me up with a sonogram, lab tests and a CT scan. The scan showed my spleen to be enlarged. I was referred to an oncologist and had a bone marrow biopsy (boy do those hurt). I also had a flocytometry test done in which the hairy cell was confirmed. I did the 2CDA in Feb. '99 and have been in remission for 1 year now. I very much appreciate yours and other's web sites. When I was diagnosed with HCL, my doctor couldn't offer me much information about it, other than the treatment for it. A friend gave me information from this website as well as other information from the internet. This information helped me to learn about the HCL and gave me the opportunity to hear what others were experiencing with this form of leukemia. I have found it interesting to hear other's reaction and victories over the 2CDA. I feel very fortunate to have gone through the chemotherapy with so little side effects. I mostly was tired and a little nauseous. My last bone marrow biopsy done in May '99 showed my bone marrow to be clear. But the flocytometry test showed 1% of the hairy cell still there. Quite miraculous! I find it interesting reading about others relapses, CBC's and their symptoms. I realize we are all different and have different symptoms but it is nice to read and relate with others who have experienced or are experiencing some of the same things I am, as well as the emotional feelings too. It helps me feel I am normal and not just paranoid. I too have low WBC and platelets; WBC 2.4, platelets 130,000. My doctor doesn't seem to be concerned and from reading about Dr. Savin's opinion, I don't worry about it. I have been having night sweats since April '99 (it was great to have at least 2 months without any night sweats after the chemo). I asked my oncologist about the night sweats, he said I must be going through menopause early because of the 2CDA. I am wondering if there are any other women who have gone through early menopause because of the 2CDA? I had several tests to see if it was my estrogen level, but everything came back normal. My doctor said it could be my thyroid, but after doing several tests it is normal as well. I'm not sure what to think, but am trying to accept the night sweats as part of life. It has been a little over 1 yr. since my chemo and I am noticing that I seem to bruise easily again and the bruises last for at least 2-3 weeks. I have also been feeling some occasional pains in my ribs again, but the pain isn't as bad as it was before my treatment. When it intensifies and is every night, then I will worry. Thank you again for sharing your comments and experiences. I'm grateful to know there are others out there who I can relate to. I feel very blessed to have a form of leukemia that is so treatable and allows me to continue living my life in a fairly normal manner. I would enjoy hearing from others about their experiences and feelings. Sincerely, Marrianne

sue - 03/18/00 19:10:42
My Email:KEVIN265@webtv.net

Comments:
hello everyone, I am so glad I found this site! I've heard from a few of you, and it's nice to know that we're not alone in the battle against HCL. My husband Kevin had two ore units of blood yesterday and his counts although still on the low side, seems to feel a little better today. He's out golfing in fact. It doesn't matter that it's only 35 degrees here in Wisconsin, he loves to golf and when he has the enegry, he's out there. I have a question for anyone who may be able to answer it. Kevin has had one round of chemo and is wondering if the chances of a second round of it are high? Our oncologist is still holding off on the biopsy, due to his couts being low. Is this a bad sign or is it pretty much the normal course of action with HCL? ANy opinions would be helpful. G d bless all of you and thank you for being there. Sue

sue - 03/18/00 19:07:28
My Email:KEVIN265@webtv.net

Comments:
hello everyone, I am so glad I found this site! I've heard from a few of you, and it's nice to know that we're not alone in the battle against HCL. My husband Kevin had two ore units of blood yesterday and his counts although still on the low side, seems to feel a little better today. He's out golfing in fact. It doesn't matter that it's only 35 degrees here in Wisconsin, he loves to golf and when he has the enegry, he's out there. I have a question for anyone who may be able to answer it. Kevin has had one round of chemo and is wondering if the chances of a second round of it are high? Our oncologist is still holding off on the biopsy, due to his couts being low. Is this a bad sign or is it pretty much the normal course of action with HCL? ANy opinions would be helpful. G d bless all of you and thank you for being there. Sue

Rob MacNichol - 03/18/00 00:05:19
My Email:rmacnichol@ivc.c.ca.us

Comments:
We are also at this site... http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1 If you are out of work for a long time, consider Social security options too. Rob M. we got two robs...

Hey Sue & Kevin - 03/17/00 20:57:55
My Email:robw@synnex.com

Comments:
I was diagnosed with HCL one year ago today. I went through 2 rounds of 2-CdA, the first in April and the second in June. My counts didn't recover after the first round and since my immune system was so compromised, I was unable to return to work. I as out of work from March 99 - July 99 - 5 months. My recovery was longer than normal, according to my doctor. You can email me offline if you have further questions or we just chat here so everyone can share in your experiences. Best of luck, Rob
sue - 03/17/00 20:30:35
My Email:KEVIN265@webtv.net

Comments:
hi, I found this site while trying to research HCL. My husband Kevin was diagnosed Jan. 24, 2000. He has recieved chemotherapy with 2-Cda and is still looking at low blood counts. He has recieved 15 blood transfusions, 12 platelet transfusions. Most of the time he's just extrememly tired, and I was hoping I could hear from people , what we can expect n the sense of recovrey time? He's 37 years old and before he got sick he was a drywall finisher. I know he's concerned if he'll be able to return to his job. His Dr. seems to think that unless his counts return to normal he'll have to sit his job out due to the risk of cutting himself or injurying himself. What have other patient's with HCL expreinced? I would really apppreciate any feedback that someone might have.

Rob Walker - 03/07/00 20:53:50
My Email:robw@synnex.com

Comments:
Hey all. I've begun radiation treatments for the seminoma (testicular cancer) and my WBC counts have dropped to 3.5, but neutrophils remain constant above 70%. Let me tell you guys, we are lucky to not have gone through radiation treatments in addition to the 2-CdA. Radiation is BRUTAL! I feel like I'm on the high seas and haven't been able to get my "sea-legs" yet. I feel this way ALL THE TIME! It sucks, big time. Stay healthy all and be thankful you're not having radiation treatments! Rob W

Mary Anne - 03/06/00 01:14:49
My Email:Rrousefam@aol.com

Comments:
To Valerie: Your letter and your case is very interesting. Contact the National Institute of Health, (find them on the Net). They should be able to provide some information for you. Good luck to you, and please keep us posted on your progress. God Bl ss.

Mary Anne - 03/06/00 01:13:25
My Email:Rrousefam@aol.com

Comments:

Valerie - 03/03/00 23:53:36
My Email:vmarch@keybase.com

Comments:
I'm not sure whether I posted my message in the right place. I was originally thought to have HCL, but today the dx was changed to splenic lymphoma with villous lymphocytes (slvl, I'll call it, for short). It's apparently very similar to HCL but rare. he treatment is the same--1 year of interferon followed by a week of 2CDA. They don't know much about survival because the disease is so rare and hasn't been identiifed for as long as HCL. Does anyone know anything about this? I can't find any informat on and don't know where to look. The doctor has never treated anyone with this and is senidng me to 2 other doctors. Thanks so much, valerie

Shirley Mangrum - 03/03/00 18:47:05
My Email:ray.shirleymangrum@inetmail.att.net

Comments:
Hi, everyone. Its been a long time since I made an entry. To recap: I was diagnosed with HCL in July 1995 and was not treated with 2CDA until June 1998. It has been 20 months since treatment and I had blood work done this week. I am doing extremely wel . WBC: 9.8; Plat: 323,000 and Hemaglobin: 15.1. I go in to see my dr. every 4 months now and have not had another bone marrow biopsy. Before treatment my counts were all very, very low and I stayed sick a lot. After the 2CDA my white count went down to 00, my hemaglobin to 7.1 and platelets 30,000. By the end of August 1998 all of my counts were back to normal. I am facing colon surgery soon and am so thankful for 2CDA. I have put this surgery off because of HCL, but now feel that I am strong enough o proceed without fear of infection. I read everything that each one of you has to say and am amazed at how different each case is. You have been a source of encouragement to me as well as a wealth of knowledge. My prayers are with you all. God Bless! Shirley

Yo Rob Walker - 03/02/00 18:26:55
My Email:rmacnichol@ivc.cc.ca.us

Comments:
I love it when they say, "There's no direct link.." ... yada yada yada... (like) indirect?/direct? there's a big difference right...hahahaha. I find it very hard to nail doctors down to a solid comment, how about you? Saven told me most people die of in ections not HCL...hahahaha! Guess 2cda works, then. This reminds me of bacon and eggs for breakfast; the chicken lays two eggs the pig gives up his life. Duh? Anyway, I'm glad they got things taken care of. I'm sure the whole experience is rather traumatic. I'm still trying to shake a cold/flu/upset digestive system??? Don't know? Hey! You think it could be leukemia? Lots of questions...no answers. But sometimes, if I feel sick, and other folks are too - which is (ironically) a good sign for me. And so etimes, I don't get sick when the healthy folks do...that really is a surprise.

dimos - 02/29/00 18:49:48
My Email:dimos@grecian.net

Comments:
I have HCL from 1991.Now I am 49 years old.I leave in Chania-Creta-Greece and I am civil engineer.I took IntronA for one year (1 doseX 3000000 every 3days)and then 1X3000000every 10 days (conservation treatment) until today.My blood count is normal.I want the experience from any other persons with the same problem and especial who treated with IntronA

Rob Walker - 02/29/00 17:36:32
My Email:robw@synnex.com

Comments:
Rob & Nancy, Thanks for your comments! I've actually met Dr. Ernest Beutler, who lead the R&D for 2-CdA at Scripps. My family and I have made a number of donations to TSRI (The Scripps Research Institute) over the past year. On a not-so-good note, I was diagnosed with stage one seminoma (testicular cancer) just last month. I've already had surgery to remove the testicle and I began 3 weeks of radiation yesterday. The good new is all my counts are still normal and there does not appear to be a d rect link to the HCL. Some theories are that while my immune system was depressed (during my 2-CdA treatments) that might have allowed the seminoma cancer cells to grow. Take care all, Rob

Nancy Atkins - 02/29/00 14:35:37
My Email:wratkins@hotmail.com

Comments:
Hey guys! Check out a new site, www.clinicaltrials.gov to see the latest info. Let's evaluate it among ourselves as to currency and completeness. Nancy Atkins

Rob - 02/27/00 14:35:02
My Email:rmacnichol@ivc.cc.ca.us

Comments:
My soruce is Doctor Saven at the Scrips clinic. These are not his exact words, but the message is the same. A nurse at the clinic mentioned that the effects over time are cumulative. Scripps is where 2cda was developed and used initially. Saven will no treat HCl until the blood counts drop to a critical level, because currently 2cda has this effect on the marrow. However, retuxan may be a different story they are starting up a phase II study. Saven has treated 300-400 patients with HCL and is conside ed by many to be the HCL Guru in the world. we are also at this site: http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=216 if you care to post there too. Congrats on your health. Mine's coming baaaaack so I am in that "phase," waiting to see when I'll get zapped again and I think this time I will elect retuxan a monoclonal antibody which does not harm the marrow (as much? r at all?)...

Rob Walker - 02/26/00 22:02:55
My Email:robw@synnex.com

Comments:
This question is for the 'other' Rob. Where did you get the information on how 2CdA "kills some of the marrow. The effect adds up overtime, and you won't be able to produce enough blood cells to function"? I've NEVER heard this and hence question your ource(s). I was diagnosed with HCL in March '99 and was given 2 rounds of 2CdA over a 4 1/2 month period. All my counts are normal as of today and there are no signs of the disease returning. If you put your sources in a previous entry, I apologize or not finding them. I think it's important we (as patients) provide only information that we know is accurate and not 'scare' anyone with unsubstantiated opinions. Thanks, Rob

Rob - 02/21/00 20:56:48
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Hi Rusty, my understanding is that each time 2cda is used it kills some of the marrow. The effect adds up overtime, and you won't be able to produce enough blood cells to function. From the timing, as I recall, the retuxan trials ought to be underway no . However, since my counts stablised, as of the last visit (I'm sure it's temporary) we did not discuss these trials so I do not know for sure if they are underway.

Rusty Pedersen - 02/21/00 17:31:38
My Email:arrowhd@cpinternet

Comments:
Hi! I like the new layout of the site! Obviously I haven't visited for awhile. In reading some comments I have a question for Rob(I believe the comment was from you). You (your doc) said 2cda is hard on the bone marrow--in what regard? I'm still in rem ssion after my first relapse (in Nov 98). I'm just too-o-o- busy to worry anymore about what "might" happen! Rob, I'm glad you see Saven!!!! We ought to pay you for your info!! Interesting stuff on that Retuxin, how soon might that be available if Saven is in a phase II study? Take care everyone!!! Rusty Pedersen

Rob - 02/16/00 20:09:46
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Hi Lsatt, I tried e-mailing you but they bounced back. Anyway, I asked Saven if he'd heard of the tea/herb mixture you drink as having helped (in anyway) people with cancer or HCL? He laughed and said, "If you feel better drinking tea go right ahead an drink it." That is about what I expected from him. However, these things may indeed work ... who knows. I don't blame you for enjoying the stuff if you feel it works, maybe it does. I don't think so, but perhaps I'll see the "otherside" before you? ahaha. I've been told that vitamines are BS, and by an Asian Doctor to stay away from Chinese medicine. This is because no one knows what it does to you. (in other words the cure may be worse than the disease). That surprized me because this guy reall knows about Chinese medicine as well as being a Dr. in the US. I decided to follow their advice because it seems to be working. I suppose, if nothing was I'd be less flipant. Michael Milkin of prostrate cancer fame (and Wall Street junk bond fame) has a site about cancer I posted it on the other site... the url is below in an older post, for the other site Mark created. Anyway, great to hear you are doing well. You may be one of the really rare people out there who throw off the disease spontaniously

lsatt - 02/15/00 02:24:26
My Email:l_satterlee@hotmail,com

Comments:
Rob,I did go in to the Dr. in Jan and he said that my blood counts are all looking good and for the first time since this whole hcl started he couldn't feel my spleen. He said he was very happy with my results but then I told him I am taking herbs for th s and he just raised his eyebrows and shook his head. Maybe there is no connection to how well I have been doing (just since I started taking the herbs) but I am certainly NOT going to go off of them to see.Have you tal;ked Herbs with your doctor? Has he given you any information on them?

lsatt - 02/15/00 02:20:22
My Email:l_satterlee@hotmail,com

Comments:
Rob,I did go in to the Dr. in Jan and he said that my blood counts are all looking good and for the first time since this whole hcl started he couldn't feel my spleen. He said he was very happy with my results but then I told him I am taking herbs for th s and he just raised his eyebrows and shook his head. Maybe there is no connection to how well I have been doing (just since I started taking the herbs) but I am certainly NOT going to go off of them to see.

Rob - 02/14/00 04:45:07
My Email:rmacnichol@ivc.cc.ca.us

Comments:
http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1 I would read though the archive files. Many stories there. Also try the above site by cutting and pasting it in the URL of your browser. Many of us are over there also, and go back and forth. I'd follow your dr's advice. It takes time to pop back up to good counts for some and not long for others. Hang in there and read what others have said in the archives. Rob

bryan a. - 02/12/00 16:06:56
My Email:hba6168@aol.com

Comments:
Hi, I am a 38 year old male who was diagnosed January 9,2000 with HCL. I began treatment with 2CDA on January 20th. The first few days were uneventful. On the 6th day, my temperature went up to 104, so I had to be hospitalized. I remained in the hospi al for 9 days, receiving IV antibiotics. No sign of infection, just high fever for 7 days. I received 2 units of blood. The fever went away, then the night sweats came for 3 nights. I was receiving Neupogen injections daily while in the hospital. My w ite count after the chemo ended was 0.1. It went up to 1.4 and I was discharged. I continued taking Neupogen injections daily and have been going every Mon,Wed, and Fri for blood work. The day after discharge from hosp., I developed a severe rash on my trunk. It later spread to my arms and legs. The dr. thinks it's an allergic reaction to the high dosage of Penicillin I received. (I've never had a reaction to Penicillin before!) Now, two weeks after completing the 2CDA and receiving daily injections of Neupogen, my white count is still very low. It had dropped to 0.6 on Wednesday and to 0.4 on Friday. Could anyone share with me how long it took after 2CDA and Neupogen for their white count to come back to a safe level? My dr. says don't worry, it takes time, but it would be nice to know how long "time" is. I feel great (except for the rash). I want to go back to work now, but have to wait until my central line is out. I do physical work, so the central line would be in the way! I would appreciate anyone who has advice to offer! Thanks to all! Bryan

Rob - 02/04/00 03:50:09
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Glenn, Where do you go for treatment? Scripps is down in San Diego. Dr. Saven is the top guy for this disease. You may want to contact his people and have a consultaion visit . Also, many of us use this site also ... and go back and forth... http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1

Glenn - 02/01/00 10:33:38
My Email:gbnetsp@hotmail.com

Comments:
Hi! I'm Glenn, 42, from the L.A. area and I was diagnosed late Nov 1999 with HCL. Took 2, cda 1st week in Dec 1999. Today is Jan 31, 2000 and my wbc is now barely up to 1.6, Henoglobin is only 7.6 (was 5.2) although platelets are normal (161). I've ha 4 blood transfusions of red blood cells and now my doc is recommending 8 weeks of injections of some drug to help my marrow make red blood cells faster. Any advice? I've tried to eat better but lost 6 pounds although I look good at this weigh (5'10" 16 ). I'm working very hard since I got a promotion in the interim so I rest when I can - usually crash on the weekends. I'd really appreciate any advice - esp diet, supplements, etc.

Don Knox - 01/29/00 06:11:26
My Email:donknox@dynamite.com.au

Comments:
Arther, I am sorry to hear about you have HCL. Unfortunately I have HCL-V which doesn't respond to 2CDA. The most popular doctor on HCL is Dr Saven who has treated over 350 HCL cases in seven years and 4 HCL-V. He is located at the following site. You wil find comments on him in the HCL Message Board on this sites home page. http://www.scrippsclinic.com/

Arthur - 01/29/00 02:33:58
My Email:avgian@hotmail.com

Comments:
I was diagnosed with HCL in July 1999 aged 49. I am a doctor myself(GP) living in Adelaide Australia. I have no idea how this HCL came about!Imminent treatment with 2CDA. Does anyone know the name or contact details of an HCL specialist doctor apparently ased in Chicago?

Mary Anne - 01/24/00 01:41:47
My Email:rrousefam@aol.com

Comments:
Ann: I'm sorry for your new diagnosis. We were all scared at first. Your dr. should allay your fears by explaining to you that what you have is a very survivable illness. Even the chemo isn't that bad. You'll get a lot of education by reading through the archives here. Also, search the internet. You may feel free to email me at the above address, and I'll do all I can to help, too. I am a 52 year old mom and nurse, and I'm on the verge of a one year anniversary free of the illness. I do have a one year bone-marrow biopsy coming up in a week, which I expect to be fine. Please write me off-line and share your burden. Trust in God and in your doctors (who think they're God --heehee) and let your family love and support you as much as possible. Good luck, oney, and remember, there's much worse leukemias than hairy-cell. We're among the lucky ones. Mary Anne

ann - 01/23/00 22:34:07
My Email:weberlr@aol.com

Comments:
I'm 35 and a mother of one. I have just been diagnosed with hcl and very scared. I'm looking for as much information as I can get and also would like to talk with others with this. thanks, ann

J.V. - 01/22/00 08:51:32
My Email:prices@freewwweb.com

Comments:
I recently had my 3rd marrow biopsy (after 2 2CDA treatments). Result is HCL's less than 1% of the marrow and bloodcounts in the normal range. But what we don't know is: with lingering HCells are we still going face another bout of growth and more 2CDA I'm male, 54 yrs. I was diagnosed in May 99. Typical of most, I had very, very, low counts. Tired, difficulty breathing, fever, impending heart failure (according to the doc). Marrow biopsy said 95% population was Hcells. After 6 transfusions I felt gr at. I was sent home with self injections of 2CDA (twice per day) sub cutaneously, followed by one week of leukine. Worked well, no side effects, I felt great. Next marrow biopsy indicated a 3% population of HCells. Again, 1 week of 2CDA injections. Now e're down to less that 1% and scratching our head about what to do next. I'd love to hear from anyone with similar experiences.

joc c - 01/18/00 16:08:20
My Email:jcjr@webcombo.net

Comments:
Hi, Has the site moved? I see no new posts since 12/31/99. Or did y2k make a hit on the site? Any info emailed to me or the old site would certainly be most appreciated! Thanks Joe C

Rob MacNichol - 12/31/99 02:21:54
My Email:rmacnichol@ivc.cc.ca.us

Comments:
Hi Roger, I'm a bit confused. You say you were treated with pentostatin, but 2cda was used? Can you be more specific? What are your counts by the way, heck we all like to know this one... it's sort of a nosy thang I guess, but let us know.

Roger Francis - 12/30/99 18:38:36
My Email:rogere@accnorwalk.com

Comments:
well its been 2 years since my illnes and it has really changed my life, for the better I hope. Not many get a second chance. since my treatment with penostatin I have done very well , my blood could not be any better! From what we can tell 2cda came out first, so that is what thet use. we dont know if its better or not.It worked fine 4 me!My thanks 2 all the doctors that helped me! Good luck everone!!!!!!!!!

joe c - 12/30/99 15:37:34
My Email:jcjr@webcombo.net

Comments:
The folks at NIH,Bethesda,Md are very accomodating concerning the BL-22 Clinical Trial. My blood sample that was sent to them threw us all a curve as the Doc up there said my HCL may have changed to some type of T-Cell Leukemia. Does anybody know anything about T Cell Leukemia? My local Doc is going to do a Marrow biopsy to confirm. My intial concern is that the 4 courses of 2cda(over 8 years may have caused a new and different strain of leukemia. Say what you may about HCL, it is still one of the most e sily tolerated chronic diseases out there! Well its too early to worry and my marrow ck may still allow me to participate in the BL-22 study. The test that uncovered this suprise was a facs study. I think it is also called flow cytometry but I dont know a ything about the test, does anyone out there know any details about this test? My guess it helps give greater detail on specific cells in the blood. I'll have to ask my doc if it can be run periodically. They routinely run a cbc with a graph that shows a hotgun type scatter between the axies of the graph. It also shows my neutrophil count which they like to stay above a 1000? Or is it supposed to stay at some percentage of the total wbc? My Doc has told me but if someone else has some guides they can p ss on regarding key info on these standardized blood analyzers, that would be helpful to many of us I would guess. I dont worry about counts too much as I realize I cant do much about them. What I and others can control is a positive attitude and outlook. I read recently that rather than saying why do I have to deal with "whatever", we should say I get to spend another day above ground, and I am going to make the best of this day! That sort of helps me put all this detail into perspective!! Good luck to ll!! Joe C Greensboro NC

Amanda Day - 12/25/99 13:18:22

Comments:
Hello! First of all I pray all of you HCL survivors lasting comfort and health. My sister (Erika Cox) wrote to you in Sept of 1999 and told you our dad's story. To put my view into words of what has happened to my family in the past four years. As my ister told you we live on a farm in Ragland,Alabama. My dad was diagnosed with HCL in June of 1995. I was in shock and never truely realized that my dad had leukemia, until half way through his chemo. Then it hit me and when it did I had no way of unde standing why something like this could happen to my daddy, whom I love so dearly. I think my sister told you his whole HCL story, but I would like to tell you about him. My daddy is 50 years old, we live on a farm with cows and two chicken houses. My d ddy is also a welder. Daddy is one of a kind! He is so unselfish and is willing to do anything for my mom,sister, and me. No matter what we have counted on daddy for everything because we knew he always did everything. He has really spoiled all of us. But I never realized it until I thought he could die. While taking his chemo my daddy still worked everyday at his job and on our farm. He never let his guard down to show us how he was really feeling. He is a hardworking "tough" man that was never si k. I am very blessed to say that daddy is still in remission and has been for four years, with a special touch from the Lord! It's Christmas day and someone asked me was santa good to me, I thought to myself "No, not santa but the Lord has been good to e to have daddy another year". God makes each day that daddy is alive a blessing. It is no secret what God can do! I have enjoyed this site and thank you for letting me share my story. May God bless all of you and keep you! If any of you read this ple se pray for my daddy and all HCL patients.

Nancy Atkins - 12/22/99 03:15:25
My Email:wratkins@hotmail.com

Comments:
What about telling prospective employers about being an HCL person? Everyone says, No, absolutely not, but I think it would be interesting to Genentech in Vacaville, Ca, or a medical library in Vallejo, Ca. I'm looking for a library technician job, work ng on my masters, and its hard not to tell these people. The medical blather I tell everyone is, "I have an excellent prognosis; it was caught quite early, 9 out of 10 chance of living 10 years." Truth is that this means nothing to the general popuation. "They'll discriminate against you and NEVER say they do." I've heard this from reliable people. I certainly don't want to become only identified with cancer. Maybe my two Lance Armstrong Wheaties boxes, front and back, sitting in my kitchen window, gi e me away. Just think, no one will ever make a Wheaties box out of an HCL person; there's only a few thousand of us. Maybe someone can write about us. Maybe I will. Diagnosis May l997, 2CDa. and I'm OK. Nancy Atkins

Dan - 12/13/99 21:05:38

Comments:

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mark taubensee - 12/4/99 15:37:45
My Email:This website author..dovelake@kiva.net

Comments:
Occasionally I have to place prior comments in the Archives to keep this page from getting too large to load quickly. Things have been very active lately here. Now that you've read the most recent entries, read the archived comments.

Volume 1 (the oldest), Volume 2 , Volume 3, Volume 4, Volume 5, Volume 6 (the most recent)