These are comments from readers of this site and those that are interested in Hairy Cell Leukemia. It's by communicating about this rare disease that we hope to help each other and create a body of knowledge based on personal experience. Please he
p
by making some comments yourself . Also, check out past comments located in the Archives Section.
Comments:
Hi HCL survivors!
And that includes me! I was diagnosed in Sept 1992 after I went in for a routine checkup and complete blood work( which I asked for since I had never had one). I was going to have my tubes tied! Needless to say, that never happened! Instead I was told my counts were extremely low and needed to see the oncologist. I was 42 at the time (I am female). I live in Duluth, MN and at the clinic here they could not figure out what kind of leukemia I had so I was sent down to the Mayo clinic for 2 days and was finally diagnosed with HCL by Dr LeTende(sp?). 2CDA was still an experimental drug and I became part of the study group(so my insurance co. didn't have to pay fo rthe drug). I had the PICC line put in and 7 days of treament with minimal side effects (some nausea but medication took care of that). At the end of treatment my Dr took my temp and immediatly put me in the hospital in Rochester! I was there for 3 weeks til the chemo kicked in AND my fever dropped! Fresh air never smelled and felt so good when I left there! Since 92 I have had 12 bone marrow biopsies and continual blood count checks. In Nov of 98 my counts were below normal so I had another biopsy (oh JOY!) and it was back! In Dec I had another round of 2CDA and I am now inremission again!! Ain't life grand!!!! I'm supposed to have another biopsy in June, but reading all of your comments makes me ? the validity of them. Seems like as long as my counts are okay there is no need for a biopsy. My Dr in Duluth is Bob Niedringhaus and he keeps in contact with the Mayo and has been out to CA and I beleive has been to seminars on HCL with Saven?? At the end of both my treatments I felt VERY achey!!! Like my bones were filled with arthritis but was actually my muscles--I took Tylenol and that helped! Plus an overall "flu" feeling AND very tired! I still seem to be tired alot and sleep more than ever but that might be because I haven't been exercising regularly (although I am of average weight for my height). Please feel free to contact me at my email and I am SO glad I found this site (I just got on the internet at work)! As Dr LeTende said when I was first diagnosed "I have great news! You have the best kind of leukemia one can get!" Today I truly know that and I try to live life more completely!
Rusty Greg Behrens - 04/20/99 20:10:58 My Email:gbehrens@pn.usbr.gov
Comments:
Hello gang, what a wonderful group of people you all are. I do so much enjoy all your shareings and thoughts. It is a great help to everyone. Soooo, here is my story.
Age=48. Sex=male. Job=geologist/geographer. Live in eastern Washington. Diagnosed with HCL spring of '93. Current condition = couldn't be better. Firt tip of something wrong was through annual blood screening at work in '93. Bless Dr. Monteguedo for s
nding me staight to a larger institute for diagnosis. Bottom scope first, then bone marrow test. My oncologist, Dr. Gersh, a wonderful and competent man, had me go to Scripts Institute in California to visit Dr. Savin, well noted researcher of HCL. Thi
trip was more to convince myself, I believe, of his (Dr. Gersh's) suggested treatments than anything else. My wife and I made a great trip out of it in San Diego.
From the first hint of being anemic to HCL diagnosis was less than 1.5 months. Absolutely no outwardly noticeable health affects. Still ran, excercised, skied, etc. Had a 7-day outpatient treatment of 2CDA (fanny pack with pump). Biked even while taki
g treatment. Unfortunately I developed an infection in my upper arm from the pic line - in hospital for 7 days till blood clot went down. Recovered nicely from the treatment, but my WBC never did get back up to anywhere normal. Then in '95 my counts st
rted dropping again. Another bone marrow test showed them furry little buggers were back. No Problem you little devils, I will hit you again with more 2CDA. Did that in summer of '95 with no problems this time (fanny pack with pump again). Things goin
great after that but then the HCL kicked up again in noticeable amounts in winter of 97/98. Began a year treatment of Interferon Alpha2A (code name Roferon). 6 months of daily self injected shots and then 6 months of 3 times weekly. Finished my year m
d March of '99 (5 weeks ago, yea!). Absolutely no problems during the interferon treatment. I lost energy, couldn't run as far or fast, in bed by 9pm, occassional heavy night sweats, neck ached, occassional headache, but all in all it was a cake walk.
told my oncologist that if I had to take interferon for the next 50 years I would gladly do it if it meant 'another 50 years'. For those facing interferon here are my suggestions - take your shot early in the evening (so the symptoms run through the nig
t while you are asleep), continue (or begin) to excercise to your fullest capability and don't miss a thing in life. I can tell already that my endurance is picking up and my wife is worried about that. She is afraid I will want to dance till 2 and be u
at 6.
I wouldn't pass up these last 6 years of having cancer for anything. I have a very wonderful family, wife, kids, and without HCL I may not appreciate them, and all the other great things in life, as much as I do. That would be the real tragedy! I am lo
king forward to many many more precious years with them. Just remember - HCL may not be cureable, but it is treatable. Support the HCL foundation and let's find a cure!
Oh yes, Hi Mom! Hi Dad! (they found this web site for me and read it all the time).
For those of you who read this site and have not written, please do so. It has only taken me a couple of years to do it. Your story, and you, are important to all of us. Love to all, greg Joop Pordon - 04/17/99 23:31:18 My Email:joliesma@xs4all.nl
Comments:
Sorry for making a mess of this site but I gave you a wrong E-mail adress: it's joliesma@xs4all.nl Joop Pordon - 04/17/99 23:28:14
Comments:
Hi everyone
Here is Joop from Holland (my first story is at archive section volume 3 date:10-3-’98).
This is my first updated information since I told you my whole story in October ‘98
As you can read in my story(in oct ’98) I am treated with “Pentostatin” for obvious reasons.
Here is an update about my condition:My condition is pretty good; accepting that:- I have no physical condition at all.-That I can’t concentrate on anything difficult in the week after ”chemotherapy” But I don’t bother too much about that. But the problem
was that my bloodcounts didn’t go up (enough) after chemotherapy.So the schedule of 1 chemoterapy every 2 weeks wasn’t possible because of my low bloodcounts;my WBC have not been better then 1.9 eversince I started my chemotherapy in september.Because of
he danger of having not enough WBC to fight illnesses or bacteria my chemotherapies were delayed time and again.
The WBC went down to 0.5(1 week after chemotherapy) and remained below 1.0 after 2 weeks several times.
Is there anyone out there who has (had) the same problem???:My WBC took about 5 weeks to recover from 0.8 to 1.5
So the doctors decided to bring down the amount of cytostatica(chemotherapy) to,first 75% and then to 50% of the normal dose.Because my bone marrow wasn’t capable of recovering of the normal dose
So at last my positive state of mind got somewhat less positive. Because I didn’t see any result what so ever.
It even went worse then expected. So I told my Haematologist that I lost confidence and asked him why my WBC didn’t recover enough to get my chemotherapy in time.
So than my haematologist told me again,but with other words, that I had the worst bloospoisining he has ever seen in his career; for as far as he was able to talk about the subject with the patient himself afterwards.
So he said:It’s a miracle that you are sitting in my office!!!!!!.But this bloodpoisining in your bone marrow has left it’s marks in your bone marrow functions.So just be patient until your bone marrow will recover:He says it will.
So when our (me and my wife’s) confidence went low we took a week off and went to Florida for a week in December to regain confidence,this really helped us .UNTIL:…. December 29 when our house was robbed for the 2nd time in 7 month (first time $15000,= wa
stolen and damaged, now it’s $21000,=)So you can imagine how our state of mind was at new years eve:We gave 1998 a big bang to the hereafter.
BUT…………late Januari I had a bone marrow biopsy and quess what:The leukemia percentage in my bone marrow went down from 70% in september 1998 to 5% now.This was a huge unexpected surprise for us, as well as for my haematologist.Who only the week before sug
ested to stop the Pentostatin treatment and take a 2Cda treatment if the bone marrow biopsy wouldn’t be satisfactory.But because it was we decided to go on until May/June and do another Bone marrow biopsy and if the leukemia percentage isn’t worse then 5%
(it might even be 0%) we are going to quit chemo for 6 months and wait and see what happens in that time.Another thing is that the last few weeks my WBC go up to an incredible 3.0-3.5 (two weeks after chemotherapy.)So my bone marrow seems to be recovering
from the bloodpoisining at last.I can’t wait for my next bone marrow biopsy in June.
I’ll let you know.
All the best to all of you. Lou DiFinizio - 04/14/99 17:11:55 My Email:lou.difinizio@qntm.com
Comments:
Hi Everyone !! I just wanted to report that I just celebrated my 6 year anniversary of my 2CDA treatment. All's going extremely well with twice a year visits for blood test and a visit with the Doctor who cured me.
I celebrateed the wedding of my first Son last March and am looking forward to the wedding of my second in September.
Regards,
Lou, who hasen't had a bad day since the Spring of 1992 !! Joanne - 04/11/99 03:20:23 My Email:joannemt75@hotmail.com
Comments:
I am a nursing student and wanted some subject that would be interesting to discuss. Your disease had one sentence in my medical book, and I found your diary to be most interesting and thought provoking. Thanks for taking the time for we nursing student
so that we don't have to spend hours in a library thumbing through a joural listing to find an article of interest. I am glad all is well with you and hope it continues to be so. Susan - 04/09/99 20:44:07 My Email:susie@projectharmony.org
Comments:
I thought I would write to give other people diagnosed hope. After two years since being diagnosed with HCl and two rounds of 24/7 2cda, I have finally been given a clean bill of health. Absolutely NO residual disease left in the bloodstream. Sometimes
it takes a little perserverance, but I believe that this is a completely managable disease and with some time and patience, anyone diagnosed can do well and live a normal life expectancy. I guess now I just cross my fingers and hope for the best for the
est of my life. Joe Most - 04/09/99 16:37:50 My Email:jmost@email.njin.net
Comments:
I'm a 55 year old male, I live in northern New Jersey, and I was diagnosed with HCL this past October. For several years I've been prone to respiratory infections, developing bronchitis at least once a year. (My wife says I don't know how to catch a sim
le cold.) It turns out that I've had consistently low white blood cell counts for at least the past seven years. When my last physical in August showed low hemoglobin and platelets as well, my primary physician said, "You know, we'd better have you see
hematologist."
Though in the back of my mind I knew that abnormal blood counts might indicate a form of cancer, I still felt a chill when I realized on my first visit to the specialist that his field is hematology/ONCOLOGY! He had another blood analysis done, remar
ed on the large size of my spleen, took bone and marrow samples for biopsy, and ordered CAT scans of my chest, abdomen, and pelvis. A few days later he gave me the diagnosis over the telephone, and we followed that phone call with a lengthy consultation
n his office.
I guess what I find most disconcerting about this disease is that so few doctors have had much experience with the latest treatments for it. My oncologist is very competent and highly regarded, but he has had only two other HCL patients. He treated
he first with interferon and referred the other to Dr. Saven at Scripps Medical Center in California because at that time 2-Cda was still in clinical trials there. I was particularly concerned about possible negative effects or dangers of the treatment o
which a more experienced doctor might be aware. When I expressed these concerns, my oncologist referred me to a specialist associated with Cornell Medical Center in New York for a second opinion and consultation. Even he had treated only six HCL patien
s using 2-Cda but I know he has had extensive experience using the drug to treat other conditions, most notably in clinical trials for multiple sclerosis. For his HCL patients he says he has had excellent results administering the chemotherapy in his off
ce for one- or two-hour sessions once a day for five successive days.
Since last October my blood counts have been hovering around the levels that make me marginal for treatment, with granulocytes averaging barely above 1000 per microliter. But since my spleen has become tender and uncomfortable, both my local oncologi
t and the specialist in New York have recommended I be treated "sooner rather than later." So I will begin one-hour infusions of 2-Cda for five successive days in the first week of May here in New Jersey. My oncologist expects my blood counts to fall dr
stically about two weeks after the beginning of treatment, and he'll put me on antibiotics then as a precaution. And then... well, we'll just have to wait and see. But I am very optimistic. And I am so grateful to Mark and to all of you who have shared
your knowledge and experiences on this site. I've found it a tremendous source of information and support. Best wishes to everyone!
Incidentally, the specialist I consulted in New York has noticed that several of his HCL patients have been involved at one time or other in photographic lab work, either professionally or as serious hobbyists. When I told him about this web site, he
asked that I poll us to see whether he might be onto something there. So if you've ever done much color or black-and-white processing, please let me know through the email address above. Thanks. Rob Walker - 04/08/99 17:33:17 My Email:robw@synnex.com
Comments:
I am 35 years old. After 4 days of running a fever of over 102 degrees and hardly being able to breath, I was admitted to the hospital via emergency on March 17, 1999. I thought it was only a worsening case of pneumonia. They took a blood sample and i
mediately noticed my platelet count was extremely low. The emergency room doctor called in a hematologist / oncologist, who immediately made a probable diagnosis of HCL. I couldn’t believe what I was hearing. After a bone marrow biopsy, his diagnosis
as confirmed. My spleen is 10 times normal size, reaching all way down my left side to my waistline (and I thought I was just getting a beer belly!). I started my 2-CdA treatments just 2 days ago. My infusion is different from most: I go into Stanford
edical Center once a day for 5 days and they infuse the 2-CdA for 2 hours each day. Most people have the 24/7 ‘take home’ infusion option, but my oncologist said this other type of infusion is just as effective. Ask your doctor about this option if yo
are interested, as it does exist (my oncologist is Dr. Steven Coutre, UCSF Stanford Medical Center). I hope to report back to you that I am in complete remission, my fingers are crossed and I’m praying the Big Man upstairs. Best of luck to all… Rob Michiel Duvekot - 04/07/99 10:22:48 My Email:wa.duvekot@wxs.nl
Comments:
My father has both HCL and colon cancer. He is now in the hospital receiving treatment for HCL, from wich he needs to recover before he can be operated. We would like to hear from other people who have had HCL and other forms of cancer. We are especially
nterested in any effects the 2-CdA treatment might have on the tumor. Roger Bosse - 03/27/99 11:14:38 My Email:rbosse@ibm.net
Comments:
Mark T.,
Thanks for providing this forum and important links to www information. I am a 57 year old male and received my diagnosis on the phone late one Friday evening and, even though my primary care physician was not particularly informed about HCL, within a
couple of hours I had facts that have served me well for deciding on an oncologist, an
appropriate treatment plan and whether or not I needed a second opinion. My symptoms (low WBC and platelets) were picked up on a blood test in conjunction with an annual physical and HCL was diagnosed after a bone marrow biopsy. Last year the doctor thoug
t I was so healthy that we had dispensed with that pesky blood test.
I have under gone 7 days of 2-cda through a mobile pump that I carried in a waist
pouch. I decided that a PICC line was best for me since I drive about thirty miles out of town to work every day. Severe tiredness during the week following chemo was the only side effect that I experienced.
I too recommend a PICC line even though I had trouble with mine and required emergency surgery when they tried to remove it. My diseased blood was gunky and a clot formed on the end of the line. Usually the PICC comes out easily (99.9%), but they had
sed a new, more flexible line on me and I think that extra softness also permitted an
excessive build up of gunk. The line was stubborn all the way and before the last 5 centimeters came out, it broke off from all the pulling. Fortunately, the piece lodged in a vein on the inside of my arm at the elbow. It was removed through an incision a
out four inches long. All has healed well and there were no other complications. For anyone interested here is a record of my CBCs:
Day.....Platelets.....Hemoglobin.....RBC.....WBC.....Neutrophils.....Lymphocytes
Range..150-375.........12-15.........4-5.25......4-10.....1500-7200......700-4900
4 Feb.....55...............14.1............4.27.........1.4............400................800
Chemo Start
1............56................11.4...........3.74.........1.4...........400...............1000
7............65................11.7...........3.93.........0.2...............0.....................0
8...........101...............13.3...........4.16.........1.0...........600.................400
10.........110...............13.1...........3.95.........0.8...........500.................200
15.........181...............13.1...........4.11.........1.2...........600.................400
20.........157...............13.5...........4.23.........1.7..........1300................200
Two weeks after chemo, I have resumed nearly normal activities except skiing. With a low WBC and neutrophils, I have tried to stay away from crowds and sick people. I have experienced no infections and have just completed 10 days on an antibiotic, Tro
an. I feel confident about the jump in my count, maybe overconfident, but I am going to breakout this weekend and go to the IMAX in Denver and eat out with my family. I live in
Colorado Springs and would be happy to communicate with anyone. My Email is:
rbosse@ibm.net
BTW there is a site that gives a brief explanation of complete blood count (CBC) at
http://www.neosoft.com/~uthman/blood_cells.html
Best wishes,
Roger B. VERONICA McGECHEN - 03/27/99 11:07:49 My Email:bearfoot@illawarra.starway.net.au
Comments:
I NOTE THAT MOST OF YOUR CORRESPONDANTS ARE FROM USA. I LIVE IN AUSTRALIA ONE AND HALF HOURS SOUTH OF SYDNEY. I WAS DIAGNOSED WITH HCL ON 1OTH JUNE 1998. I WENT TO THE DOCTOR AS I HAD A BLACK EYE SOCKET FOR NO REASON. A BLOOD TEST AND THEN BONE MARROW
BIOPSY CONFIRMED HCL. I WAS AT THE TIME AND STILL AM VERY HEALTHY. THE BLACK EYE THE ONLY IDICATION SOMETHING WAS AMISS.
I DID NOT START INTERFERON TREATMENT UNTIL 2ND FEBRUARY 1999. I AM SELF INJECTING THREE TIMES A WEEK WITH NO SIDE EFFECTS. SOME AFTERNOONS I AM TIRED BUT I AM WORKING THREE DAYS A WEEK AS A TYPIST.
I AM AGED 51 WITH A HUSBAND AND TWO CHILDREN AGED 22 AND 23. INCIDENTLY BOTH CHILDREN HAVE THE RARE CONDITION PKU OR PHENYKETONURIA WITH IS A GENETIC OR METABOLIC DISORDER. THEY CANNOT TOLERATE PROTIEN. HAVE BEEN ON PROTIEN FREE DIET SINCE BIRTH OTHERW
SE THEY WOULD BE MENTALY RETARDED.
HCL HAS NOT ALTERED MY LIFE SO FAR. I AM SO PLEASED THAT I AM NOT ILL FROM EITHER THE HCL OR FROM THE INTERFERON.
MY DOCTOR HAS EIGHT OTHER PATIENTS, AND WORKS WITH TWO OTHER HEAMATOLOGISTS. BETWEEN THEM THEY HAVE 20 PATIENTS IN MY GEOGRAPHICAL AREA OF APPROX 100 MILES BY 20 MILES WIDE. (A STRIP BORDERED BY OCEAN AND MOUNTAINS).
I HOPE YOU GET A FEW OTHER INTERNATIONAL CONTRIBUTORS TO YOUR PAGE.
I THINK THAT THE POPULATION AS A WHOLE SHOULD BE EDUCATED TO THE FACT THAT SOME LEUKEMIA CAN BE TREATED AND IS NOT A DEATH SENTENCE.
WHEN FIRST DIAGNOSED I READ A BOOK CALLED "THE TIME OF MY LIFE" BY JOEL NATHAN AN AUSTRALIAN WHO WAS THE FIRST PERSON TREATED WITH INTERFERON IN AUSTRALIA IN 1985. HE WENT ON TO SURVIVE LUNG CANCER AND IS STILL ALIVE 15 YEARS LATER.
I AM SORRY TO BE GOING ON A BIT I HAVE ONLY JUST DISCOVERED YOUR PAGE, EVEN THOUGH MY HUSBAND HAS TOLD ME THAT IT EXISTED.
BEST WISHES TO EVERYONE.
VERONICA McGECHEN
18 RITCHIE CRESCENT
DAPTO NSW 2530 AUSTRALIA. madelaine - 03/26/99 13:52:25 My Email:e_mbefus@junction.net
Comments:
Hi, my name is Madelaine and I've recently been diagnosed with HCL.
Last month I has treated with 2-CDA and my prognosis is good.
I'd like to correspond with others who have HCL and also find as much
information as possible on the disease.
I've found quite a lot of info on the Web but I have not yet met anyone
alse who also has the disease. In the area where I live there is only 1
other HCL patient and he's a very elderly gentleman.
Regards
Madelaine Robert MacNichol - 03/20/99 03:12:59 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hey everyone!
I go for HCL checkups every three months then put out a sound bite here about it. This time there's just nothing to say. Everything's ok. I was treated a year ago in Feb. My 50th b-day went by unnoticed. My 51st.. Mar 8, 1999 was a little more notic
able. Dr, says I'm fine, I even feel used to the idea of having leukemia, and not worrying about it. I guess it's like flying. Once you're up in the air and the plane's doing ok, you calm down. I have occasional ( about once every 4-5 years) bouts of p
eurisy... but this is because I do not rest a lot sometimes, and apparently caught some damn virus that gives me a tendency toward this boring affliction. The Dr. says it is in no way connected to HCL... that makes sense because I had it years before HCL
I get rest, sleep, become a couch potato and it goes away until I forget to sleep enough, etc. Let's see (spilling my guts) I hurt my shoulder lifting weights. Been on light duty for about 2 months<--- this sucks. I went jogging on the treadmill abou
1/2 hour ago. not bad, all the fat just giggled along. I'm usually pretty lean-ish so didn't like the Jell-O feeling. What else? Oh, I kind of learned how to "pop" my shoulder back in place. I feel like the scarecrow on the Wizard of Oz stuffing str
w back into me. Last thing I wanna say is, I have never!, never!, stopped eating out and having a good glass or two of wine. This is really the main point I want to make here. Also, I have checked behind both my ears for melanoma... I'd like to thank w
oever pointed that out..... I don't have it!... At this point in time, thank you [Rob].... Greg Martini - 03/12/99 06:02:33 My Email:6martinis@msn.com
Comments:
Hello all,I am a father of four boy's and husband of the hardest working woman on Earth! I was diagnosed with HCL Feb. 14, 1991. I know, Happy Valentines Day! I was only 26 years old and was being rolled into the O.R. for a routine scope on my knee when
my anesthesiologist came running into the room screaming "Don't do anything else". You see, my platlets were at 70,000 and my WBC was 1.7. The first words out the surgeons mouth were , "Greg, have you ever had an AIDS test?" Neddless to say, I was a bi
surprised. Next up, was my Hemotologist/Oncologist, "Greg,we think you may have Lymphoma"; well, at least I wasn't as dead as I was two weeks ago in the O.R.! Finally, a wise man at U.C. San Francisco cleared it all up with the correct diagnosis. Now
ere I am 8 years later, minus a 1453 gram spleen;(Doc says closest thing to child bearing a guy could ever experience) and I am as healthy as I was before anything ever surfaced(425k plt, 4.1 WBC). Now I almost yearn for the day that I get to start 2CDA
reatments. But like my Oncologist says, the longer I stay in remission, the more advances are made. He's right but its gonna be nice to have that little black cloud as far away as possible! great site guys, its nice to be able to talk to people that re
lly know and can fully understand the full gammet of emotions that one feels, not that our friends and loved ones don't try God bless 'em, it's just the feelings that do not translate well to words, that you and only you can relate to. Best of health to
all, and remember, Laughter and positive attitude are almost as good as any medicine! tony - 03/06/99 15:41:43 My Email:tony_rummery@yahoo.com
Comments:
> >Dear HCL Support Group
> >
> >My Company Doctor gave me your email address and a brief summary of
your activities.
For several years I had been prey to various viruses and had seemed to
others to be lacking in energy.
I then married at 35 years, and my wife and I started to plan a
family. After 18 months or so later, with no result, we started
investigations into our nfertility, and in December 1995, I was told I
had HCL. This was
really scary as we heard the word "leukaemia" and thought the worst.
The disease was not at the stage at which the consultant felt that
treatment was required, and so we were in a "waiting game" until in
March 1997, we were told that following a viral infection, my platlet
and haemoglobin counts were seriously depleted and treatment was
therefore required.
This was a very anxious time: fortunately the deoxycoformycin
treatment is a very mild form of chemotherapy and my hair didn't fall
out and
it was all done as an outpatient apart from a daytime stay in hospital
on one occasion as the treatment had knocked down my red cell count.
By July 1997, the blood counts had returned to normal (dramtically so
in fact over a two week period) and in September 1997, I was told I am
in full remission, which has remained the case to date.
I am very interested that a support group exists - I have never met
anyone else with HCL or heard of any support groups.
If I can be of any assistance to others I would be interested: my
email address is at the top of this note.
Best wishes...A Rummery
Mark Beauchemin - 03/01/99 22:20:07 My Email:donnabee@mediaone.net
Comments:
During August of '98, a week prior to Donna starting her Masters program for Acupuncture, my wife went to our family physician for a routine visit complaining of an upset stomach that she had all summer. After running a blood test they were concerned abou
her WBC and Platletts. They repeated the tests 3 times over 2 weeks and finally recommended she see a hemotologist.
In early/mid september she saw a hemotologist/oncologist recommended by our family doctor. He looked at her blood and told her that he didn't think she had cancer and they would monitor her blood levels every 6 months.
Not pleased with his response Donna called my sister-in-law, who is a nurse at Dana-Farber Cancer Institute and asked if she could find a good oncologist to visit at the hospital.
The earliest they could see her was mid November. In early November she decided to postpone the visit until semester break not thinking they would find anything. During the week of 12/14/98 she visited with the oncologists at Dan Farber. They took a blood
sample and she came home.
Friday night 12/19/98, at 10:00 PM, Patrick, the Dr. studying under the attending called and informed my wife Donna that her platlett counts had increased and her WBC was almost normal, however, he was concerned about the differentials in her WBC and reco
mended she have a bone marrow biopsy to rule out any form of cancer.
on 12/23 she had the Bone Marrow biopsy performed. Patrick told her that he would get back with us early the following week. He finally called us on 12/30/98 while we were celebrating the new year with my family at the beach in NC. He told Donna that he w
s surprised that she had HCL 1. she is a woman and 2) she is young (43).
He told her that she had HCL, but not to worry the disease progressed slowly and they had good treatments (2CDA) that is 85% to 90% effective and places the disease into long term remission. He suggested that she visit him and the attending when we return
d from our vacation. She visited with them in mid January and had her blood drawn. Donna asked that they only get back to her if her counts had worsened.
In the meatime she started her second trimester at Acupuncture school. On 2/20/99 she called the family doctor complaining of not being able to focus with her vision. I figured she was getting tired from studying and reading. The doctor recommended she co
e in and have some blood drawn that day and setup an appt the following morning. After looking at her results he decided to have another blood test taken and expidited the tests. Later that afternoon while Donna was in school I got a call recommending she
see her oncologists. I paged Patrick and asked to have the results of the blood tests faxed to him.
The next morning at 8:00 AM Patrick called concerned about the differential in her WBC and told her that she is prone to infection. He indicated that he was concerned with the way HCL suddenly turned aggressive in her and told her to cancel our vacation t
the Caymen Islands we had scheduled for the following week.
Donna is scheduled to start treatment on 3/3/99. Patrick who was extremely optimisitic about things is suddenly being cautious about what he says. Both Donna and myself are very concerned about the sudden turn in events.
From the reading I've been able too do (mostly from this web site) it seems that 2CDA is a well received drug with limited side effects.
If the above isn't bad enough I was diagnosed with MS 3 years ago and have been battling a number of issues that have progressively gotton worse this year.
I keep telling my wife things aren't going to get any worse, but she doesn't believe me. We have definitely decided to sell our house once she's feeling better. We have been living here for 5 years and have had nothing but health problems! I wonder if the
e's something in the water?
We are interested in hearing any one that has gone through treatment and what their experiances are. I will post another note after my wife completes treatment in another 2 weeks.
Mark mark t - 02/16/99 15:13:51 My Email:website author
Comments:
I've decided to include this letter I received:
>Dear Mark and Support Group Members,
>
>My husband, whose name is also Mark, was diagnosed with HCL last March.
Spring
>was grim, but he is doing beautifully now. (Mark T., we are grateful to you
>for recording your Leukemia Journal. It has been such a help to us.)
>
>We realize what a rare form of cancer this is, so we were astounded last
week
>to discover that a neighbor who lives across the street was just beginning
>treatment for hairy cell. We are, of course, wondering if this is just a
>statistical anomaly or if there is perhaps an environmental link to the
>illness. Do you know of any other HCL patients who have experienced a
similar
>coincidence? Would an HCL research organization be interested in hearing
from
>Mark and Dan? Thanks for any information that you may have to share.
>
>Sincerely, Alicia and Mark R., rudn6062@aol.com
>
>Thanks for any help you can provide.
> mark - 02/15/99 16:16:58
Comments:
Sorry, the forum message board has been out of order lately.... Dorothy M. Hintz - 01/26/99 23:31:22 My Email:dh12919@navix.net
Comments:
I was seeing my family doctor for a urinary tract infection. The antibiotic he was giving me didn't seem to be making me feel any better. I had a total loss of energy, lack of appetite, night sweats, fever spiking to 104 degrees, up and down. I told my do
tor I didn't think we were getting to the bottom of this, so he ordered a blood test. The blood test showed him some funny things he didn't understand, so he consulted with a colleague of his (a hemotologist/oncologist). After talking with Dr. Sorensen, h
immediately sent me by ambulance to Bryan LGH East in Lincoln. Dr. Sorensen examined me, ordered two blood transfusions, an MRI, and a bone marrow biopsy. This was Nov. 22, 1998. After reading the results of the tests, Dr. Sorensen informed me that I hav
non-Hodgkins lymphoma in the spleen and bone marrow. I was in the hospital until Nov. 26, when he sent me home for a few days to return Dec. 2 for the diagnostic removal of my spleen. He was not able to reach conclusions as to the sub-type of my lymphoma
from the bone marrow biopsy. Dr. Buckley removed my spleen, which was enlarged to the size of a football. The spleen contained small tumors, and they sent the specimen to Utah for classification as to type. Dr. Sorensen was relatively sure it was Cell Typ
B, but he wanted further classification before beginning treatment. The test results from Utah showed hairy cell leukemia, so after four days in the hospital, he sent me home to heal from the surgery, and made arrangements for a re-check in 10 days.
The medications he gave me were allopurinol, prednisone and an antibiotic. They removed the staples from my incision and put steri-strips on it before I went home. I was feeling quite a bit better and went back to work, but it was only a few days befor
I had a major problem with constipation and was in severe lower back and abdominal pain. I vomited and strained so much that my stitches were torn loose.
The rescue unit took me to our local hospital at Hebron, where the next morning Dr. Anderson put the stitches back in. Then I was dismissed,and my family doctor removed the staples from the incision and put steri-strips on it six days later.
When I went back to Lincoln for Dr. Sorensen's re-check, he gave me a pneumovax shot, and scheduled my chemotherapy as an outpatient at our local hospital in Hebron. I was to take four treatments, three weeks apart, and then they would do another bone
arrow biopsy to see if the bone marrow was clear. If it was clear, they would do two more chemo treatments, which he expected to put my lymphoma into complete remission.
On Dec. 23 I had my first chemotherapy treatment, which included a combination of cyclophosphamide (cytoxan), mitoxantrone (novantrone),and vincristine (oncovin) given intravenously, and prednisone taken orally for five days. I did not get sick at all,
and in fact, felt a lot better for several days.
After about two weeks, my hair started falling out in clumps, and thinned to about one-third of normal. Then I got bladder infection again, and then I got infection along the line of the incision from my surgery. Then I got blood clots in my left thigh
which made my stump so sore I could not wear my prosthesis. (I was amputated above the knee nine years ago as the result of a traffic accident.) The stump is still too swollen to wear my prosthesis, so I am using crutches.
These complications postponed my chemotherapy. Dr. Sorensen insisted that the infection had to be cleared up before he would permit any more chemotherapy. Finally, today (Jan. 26, 1999), the infection is clear and my blood test and urinalysis were okay,
so I am supposed to go back for my second chemotherapy treatment tomorrow.
(more update as treatment progresses).
I am 58 years old, the mother of four married children and grandmother of nine. My husband is a farmer. I am a writer for the Deshler Rustler newspaper and farm bookkeeper for my husband.
I would appreciate e-mail from anyone who has hairy cell leukemia or has had it in the past. Dorothy M. Hintz - 01/26/99 23:30:56 My Email:dh12919@navix.net
Comments:
I was seeing my family doctor for a urinary tract infection. The antibiotic he was giving me didn't seem to be making me feel any better. I had a total loss of energy, lack of appetite, night sweats, fever spiking to 104 degrees, up and down. I told my do
tor I didn't think we were getting to the bottom of this, so he ordered a blood test. The blood test showed him some funny things he didn't understand, so he consulted with a colleague of his (a hemotologist/oncologist). After talking with Dr. Sorensen, h
immediately sent me by ambulance to Bryan LGH East in Lincoln. Dr. Sorensen examined me, ordered two blood transfusions, an MRI, and a bone marrow biopsy. This was Nov. 22, 1998. After reading the results of the tests, Dr. Sorensen informed me that I hav
non-Hodgkins lymphoma in the spleen and bone marrow. I was in the hospital until Nov. 26, when he sent me home for a few days to return Dec. 2 for the diagnostic removal of my spleen. He was not able to reach conclusions as to the sub-type of my lymphoma
from the bone marrow biopsy. Dr. Buckley removed my spleen, which was enlarged to the size of a football. The spleen contained small tumors, and they sent the specimen to Utah for classification as to type. Dr. Sorensen was relatively sure it was Cell Typ
B, but he wanted further classification before beginning treatment. The test results from Utah showed hairy cell leukemia, so after four days in the hospital, he sent me home to heal from the surgery, and made arrangements for a re-check in 10 days.
The medications he gave me were allopurinol, prednisone and an antibiotic. They removed the staples from my incision and put steri-strips on it before I went home. I was feeling quite a bit better and went back to work, but it was only a few days befor
I had a major problem with constipation and was in severe lower back and abdominal pain. I vomited and strained so much that my stitches were torn loose.
The rescue unit took me to our local hospital at Hebron, where the next morning Dr. Anderson put the stitches back in. Then I was dismissed,and my family doctor removed the staples from the incision and put steri-strips on it six days later.
When I went back to Lincoln for Dr. Sorensen's re-check, he gave me a pneumovax shot, and scheduled my chemotherapy as an outpatient at our local hospital in Hebron. I was to take four treatments, three weeks apart, and then they would do another bone
arrow biopsy to see if the bone marrow was clear. If it was clear, they would do two more chemo treatments, which he expected to put my lymphoma into complete remission.
On Dec. 23 I had my first chemotherapy treatment, which included a combination of cyclophosphamide (cytoxan), mitoxantrone (novantrone),and vincristine (oncovin) given intravenously, and prednisone taken orally for five days. I did not get sick at all,
and in fact, felt a lot better for several days.
After about two weeks, my hair started falling out in clumps, and thinned to about one-third of normal. Then I got bladder infection again, and then I got infection along the line of the incision from my surgery. Then I got blood clots in my left thigh
which made my stump so sore I could not wear my prosthesis. (I was amputated above the knee nine years ago as the result of a traffic accident.) The stump is still too swollen to wear my prosthesis, so I am using crutches.
These complications postponed my chemotherapy. Dr. Sorensen insisted that the infection had to be cleared up before he would permit any more chemotherapy. Finally, today (Jan. 26, 1999), the infection is clear and my blood test and urinalysis were okay,
so I am supposed to go back for my second chemotherapy treatment tomorrow.
(more update as treatment progresses).
I am 58 years old, the mother of four married children and grandmother of nine. My husband is a farmer. I am a writer for the Deshler Rustler newspaper and farm bookkeeper for my husband
- 01/26/99 00:00:27
Comments:
My father was diagnosed with HCL in September of 1998 after a trip to the National Institute of Health in Maryland. He suffered for a year before going there. Initially they thought he had lung cancer because a couple of spots showed up in his lungs amo
g other things. They did biopsies of one of the spots and it turned out to be an infection. That was in May of 98. It turned out they found MAC (Mycobacterium Avium Intercellulare). He started treatment for that and was told it would need to be treate
for a year or two. In June he developed massive lesions on his legs. It looks like something was eating them. They were extremely painful. His blood counts were very low and they had no answers why he caught MAC or had the lesions. The low red blood
count was a normal characteristic of MAC, but not the white. They started him on Nupegin shots and that helped the white count a little but only for a short time before lowering again. Then we went to Maryland. There they discovered the HCL. He was ho
pitalized in October and had the 2CDA treatment for the seven days. He tolerated it well and didn't have any major side affects. His legs even are getting better. Still trying to avoid plastic surgery on them. Since he went home, they gave him the Nup
gin for a couple of weeks and it boosted his White Count finally. But then it started to drop again. It is now at 1.2. But they did another Bone Marrow Biopsy and say that they did not find any HCL? Once again we are puzzled. Anyone else out there ha
e MAC and HCL? Or any other side problems that relate to him. The whole entire time he has been sick, he has ached, especially in his knees and shoulders. Any information would be greatful! Mark Taubensee - 01/15/99 12:01:06 My Email:this website author
Comments:
Hello everyone. It's been a long time since I made any entries to the diary and people sometimes inquire as to how I'm doing. I'm doing just fine. I have check ups three or four times a year to monitor blood levels. So far, the blood counts just keep gett
ng better.
I'm encouraged that the site is serving it's function. I hear from people all over the world. What's discouraging is the fact that many people, in Europe particularly, are not receiving up-to-date medical care. Doctors seem to be the ones who would benefi
the most from visiting the website. Many of you seem to know more about 2cda than they do.
It's always nice to hear from friends and read the updates you post here.
Best of luck to all of you in this very select club. Mark King - 01/10/99 01:06:08 My Email:markking@gridusa.net
Comments:
Sorry it's been so long since I wrote in but things are going so well that I just hav'nt had the time. All of my numbers are normal [was treated in August] and I have entered a national body transformation contest which has me runnung 3 to 4 miles every m
rning and then training in the gym a couple of hours each day. My diet has been 1500 calories and 15 grams of fat a day. I started my transformation on November the 10th and was at 27% body fat, as of January the 5th my bodyfat % was 11. You can't imagine
how this has helped me not only physical but mentally. I now have control of my life back [which I seem to have lost when I was diagnosed with hcl] and feel like I can tackle any problem. Hairy Cell may one day return but if it does it will have to deal w
th me instead of me dealing with it. Health and happines to all, Mark Mark Kolman - 01/06/99 01:01:18 My Email:KolmanM@dsmo.com
Comments:
In 1986, I was 39 years old and told everyone that I wasn't going to have any more birthdays. Well, I almost got my wish. I was tired all Spring, had pains and aches, and my gums were bleeding. My friends made me go to a doctor who took blood and foun
a 19 hematocrit. 11 units of blood later I was stable.
One and one-half years later and daily Interferon throughout they decided to take my spleen out.
Six hours and two months recovery got me four months relief -- not worth it.
September 1988 was Pentostatin. Put me in remission, but damn near killed me. Two types of pneumonia and 90 days in the hospital - but a true remission at last.
Now I was struck by the Cancer Superman Syndrome. I started doing Triatholons to prove how "bad" I was. I worked harder than anyone and never stopped smiling.
I travel around the country as a trial lawyer handling big cases.
In October 1993 I relapsed - and decided it was time to try new therapy and end a terrible marriage -- life is too short.
2CDA made all of the difference. Minor side effects and great results. I worked throughout the treatment -- big deal one week.
Been in remission since October, 1993.
Served on the Board of Directors of the National Coalition for Cancer Survivorship -- did you know that there are 8 million of US -- the Maryland Chapter of the Leukemia Society, and the Board of Advisors of the Greenebaum Cancer Center.
I have done TV spots for survivors, public service programs, and fundraising. Some might say I am a fanatic survivor -- but never a victim or a patient.
I have an amazing and wonderful 20 year old daughter - my scuba diving buddy - who has lived with me since she was 15 - when I separated.
This past summer, I married my best friend -- I had only known her 11 months, but after all, how long does it take -- and how long do you think WE have anyway?? She is smart and fun and loving and makes me smile -- she also makes me laugh -- and we need
ll of that there is. I was 52 when I married her and promised her another 52 years -- though she says that I will probably die from chocolate chip cookies long before the leukemia gets me.
I hope that this story of hope and success and smiles helps someone out there. I know how scary it is, but HCL is the one we can LIVE with - and not just curl up and die from.
Good luck to all and keep fighting.
- 01/03/99 23:34:46
Comments:
In my 12/29/98 comments I mentioned that my spleen was greatly enlarged due to HCL. A question was raised as to the current condition of my spleen. It is normal. Praise God! The doctor told me at the time of my admittance to the hospital that 5-8 year
ago splenectomy would have been a part of the treatment, but that 2-Cda was very effective in reducing spleen size. One of my nurses was surprised that my spleen had not been removed. But then again, most of the nurses had never heard of HCL. I attribu
e that to the fact that it is frequently treated as an outpatient.
At any rate, day by day my doctor reported the shrinking of the spleen. He said even though he had seen it work in many cases he was still amazed at how effective it was. Based upon my experience I would be wary of any treatment which included removal o
the spleen. Jack Russell - 12/29/98 04:26:50 My Email:pastjack@nb.net
Comments:
Had a 3-month check-up today. No signs of HCL. I was diagnosed with the disease on May 22, 1998. I was forced to have treatments in the hospital because my white cells were so low my doctor was afraid of infection.
During a 25 day stay in the hospital I received massive doses of various antibiotics and 7 days of chemotherapy.
I was released from the hospital on June 16, 1998. I have enjoyed a complete recovery. In spite of the fact that my doctor told me I had more of the disease than anyone he'd ever seen and that I had the largest spleen he'd seen in 30 years of practice I
ave no signs now of ever having been sick.
The doctor tells me the odds are very good that the disease will never return. Praise God!
My recovery exceeded all expectations. While chemo treatments are not something I particularly enjoyed, the effects were minimal. I did experience loss of apetite and fatigue, but my only nausea came as a result of a reaction to antibiotics and I had no
hair loss, etc. Rob MacNichol - 12/29/98 02:09:51 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hello,...Just had another DR. visit. My blood's doing well, all in the normal ranges, though lower than they ever used to be when I did not have HCL. The Dr.s do not seem to mind, and so I don't either. I feel and act perfectly normal. There's some psy
hological things I think we all suffer from, some hypochondria. When I feel good (I feel great!!), when I have what I can only describe as "normal" aches and pains I think uh-oh! So far none of this seems to matter with my health. I do well, and eat we
l, exercise regularly. I had an intestinal infection (3 months back). The Dr. asked if it was wise for me to be running 4-5 miles with this infection... he was rather sarcastic... I said I thought it was a milk allergy (really!)... anyway my white coun
s went to 2.1 that was lower than when I had chemo! They started back up to 2.7 the next day... had to take some nasty meds (ciprol, and flagyl???). Really it sucked but I took it. My white counts have been 4.1 last two visits... I think I've "topped o
t" on that, but the Dr.'s say that's good, I'm doing fine...yada, yada, yada.
One DR. said HCL could return, but maybe it never will. I said, "Yeah, it's like walking around in a mine field!" to which he replied, "We're ALL walking around in a mine field... I think this is true. So I'm working on the "little bit" of denial-thing
mentioned in an earlier post. That's not to say there can be no such thing as too much denial. That's foolish, I know I have HCL, but I work constantly at ignoring it as much as possible. When I can act/feel normal, I play it for all it's worth. I kn
w there will be "daze" when I get a little bummed, but I still go jogging, lift weights, eat well, rest, and goof off at work as much as possible. I like to look at pretty girls too, that takes my mind off 99% of my problems with HCL. I also like to rea
the news about cancer treatment advances. Some of it is too new to help much, but it is amazing never the less. Hang in there.....Rob Roger Francis - 12/22/98 02:13:30 My Email:rogere@accnorwalk.com
Comments:
It has been a year since I was diagnosed with HCL and was treated with Pentostatin. My blood has been a-ok!
Last year this time I didnt know if I was going to make it!
It sure made a difference on my life!!!!!!
Yesterday was the Past!
Tomorrow is the Future!
Today is a Gift!!!!!!
Best of luck to everyone!!!!!!!!! Jennifer Middleton - 12/14/98 03:28:53 My Email:jaybird@snowcrest.net
Comments:
Hello, thank you for this site Mark. This letter may be long but I have good info in it so read on. I am 41 years old, my oncologist considers me a bit young to have this disease. I am in the eighth week of recovery from my first dose of 2CDA for HCL. The
reason the hairy cell was discovered in my blood is that I had been experiencing unusual bruising on my arms and legs for about a year and was getting painful pulsing headaches in the back of my neck and top of my head, I was advised to have a CBC (comple
e blood count)done and have my platelets checked of which I did and that is how I was diagnosed. Presently, I feel great and optomistic, I have more energy now than before my diagnosis, although every few days I still have what I call a "chemo day" which
nvolves lethargy and pressure in my stomach and sides where my liver and spleen are and slight chills, but even 2 months after treatment I can still feel chills a little bit everyday if I sit down in the afternoon and have some quiet time. I do have some
omments and questions. I haven't yet read about anyone elso experiencing a tender gut during the recovery time, I had to stay on a very mild soft diet for about the first 3 weeks of recovery, if I see another bowl of applesause I will run away screaming!
even then, some days applesauce would give me a whopping stomach ache, I would have to take some Pepto Bismal and go to bed. I was the youngest in the hospital which was a bit depressing, but was also the only one that was a "walky talky" meaning that I
ould shower on my own and walk around the floor of the hospital that I was on, I tried to take several walks a day but some days my appetite was not good and I just didn't feel like it. I called the mobile IV tree that I was attached to "Matilda" and I wo
ld say "Come on Matilda, let's waltz" and off we would go for a walk. I was allowed to come home after the 7 day treatment as long as I had an in home health care nurse and was not allowed to leave the hospital without being set up with massive doses of
rip antibiotics, I then was able to walk around my house at my leisure with my little piece of humming luggage of which I named "my little bag of tricks". I had been home for two days and developed a whopping allergic reaction to the antibiotics, a full
ody red rash that itched to beat the band, my fanny was most effected and I would wiggle all over the couch and scoot across carpet like a dog, until finally I went to my husband, pulled down my pants and said "Hon, I'm desperate, please scratch, scratch,
scratch," he lovingly obidged while watching the six o'clock news, that was my most humbling moment, sweet relief, sweet man. The next day my nurse called the doctor and he said I could have Benedryl which helped immensely. O.K. here is my theory on wher
this disease comes from. Two years ago, my mother (78 years old) died of Chronic Lymphocitic Leukemia, she was a writer and worked in several newpaper offices and said that before the white liquid eraser named "White Out" was discovered to cause leukemi
- she would spend all day at work with it all over her hands, there is also a question about inks and dyes in the printing business. 2 1/2 years ago my brother (53 years old) died of a newly recognized condition call "Multiple Chemical Sensitivity Syndro
e". He was one of those that became allergic to the world, he felt he was a misfit, was very, very sick and commited suicide, his immune system was shot. I just found out that a great Uncle on my mothers side had leukemia, the family member that told me
his said that he seems to remember that this great Uncle contracted the leukemia after he became a chemist, this would mean chemical exposure and in those days chemists may not have been as careful as they are now. I have yet to discover why I contracted
this disease, I feel that herbasides and pestisides are a major contributer. All the studies that I have found say that leukemia is not genetic, but it does hit the blood and immune system which only leads me to believe that genetically I inherited an im
une system glitch. Presently I am taking vitamin A &D,C,E,B6,Calcium/Magnesium,Zinc,Selenium, and Astragalus. My question now is, my spleen is enlarged, does anyone know why I have little painful stitches below my ribcage on both sides of my body and in
y abdomen, is this normal? is it a chemo thing? and how long does it take to go away?..................thanks, Jennfer Jennifer Middleton - 12/14/98 01:50:58
Comments:
November 10, 1989. I am lying in the ER of St. Vincents Hosp., Staten Island suffering from severe pneumonia, hard to breathe, spitting up blood. A doctor walks up to my bed and tells me I have Hairy Cell Leukemia. Surprisingly, I am not surprised or s
ared, but almost calm. All my life I had worried that I would get a life threatening disease-now the suspense was over!
I suffered for two weeks in the hospital battling the pneumonia, but I won and came home Thanksgiving Day. Then interferon for a few months with no improvement. Then that doctor who broke the news tried a new drug (sorry, I forget the name) and after 6
onths of chemotherapy, I was OK. I am still OK today thanks to my Doctor, my family and my God.
Of course, it hasn't been all smoothe. Two summers ago I found a melanoma behind my ear. So, I had a neck dissection to remove all my lymph nodes in my neck. Everything is clean and green.
So, as a young 38 year old man who never smoked with three young children, I am told I have cancer. My thought was thank God it is me instead of some 7 year old who would not understand all the pain and suffering. Let me have it, I've been to the dance,
let that child live.
Being a two-time cancer survivor has changed me. I am no longer afraid of anything. I have two rules: 1. Don't sweat the small stuff. Rule 2. It's all small stuff. Every day is a good day and I will embrace it-good or bad.
Cancer is not a dirty word and people who have it aren't pariahs! Understand and love unconditionally. It can be overcome.
God bless,
Wayne Stiles Alan Ellison - 11/30/98 23:37:25 My Email:ellison@citnet.com
Comments:
Hello, I am a father of 3 sons, husband of a nurse, and turned 45 today. I was diagnosed with HCL last November, 4 days after admitted through ER with severe vasculitis in my right thigh. Treated with 2cda for 7/24 with a PICC in a neutrapenic room. Re
eased the next day. 7 weeks later (after gaining 25-30 lbs on steroids),began 3 month ordeal with chronic gout in right large toe. Now I take allopurinol every day to control it. HCL continues to be in remission though my platelets run low (~115). I gen
rally feel very well but I have occasional mid-back pain which may or may not be related to HCL, allopurinol or injury(I regularly referee soccer games). I would like to hear from anyone with similar presentation or side effects. Best wishes to everyone
Diane Baker - 11/30/98 14:43:13 My Email:bakehach@concentric.net
Comments:
My husband was diagnosed and treated(2cda) more than seven years ago for HCL. He's been doing beautifully ever since, and has had two children since treatment.
We are finding it impossible to find life insurance
for him. THe one time we actually got a quote was for an outrageous premium. Usually quote aren't even forwarded, since he has to answer
'yes' to the 'cancer' question. Has anyone out there successfully found life insurance since treatment? He is 51 years old/non smoker.
Thanks to all, and Good Wishes. Lynne - 11/24/98 07:33:01 My Email:dtscl@swb.net
Comments:
I'm sorry for taking up this space so soon, but it is 1:20a.m. and I just have to say something else. My husband (see previous story dated 11-23rd) is supposed to start anti-depressant medication while he is being treated. Nothing was mentioned about ch
cking out this (or any other) web-site! I know that I have been encouraged while reading about others out there and I know that this site is going to help him. A few other things: In 1992, our insurance company didn't even want to speak to us about pay
ent. It seems that they were ready to continue longterm disability and treatment of Interfuron, even willing to pay for a complete bone marrow transplant! But they wouldn't touch the 2-CdA with a 10-foot pole! It's nice to search for material for this
nd it is great that a chat-line exists. I wish everyone well. Lynne - 11/24/98 07:06:26 My Email:dtscl5@swb.net
Comments:
Well, here is a bit of my story. My husband was diagnosed with HCL in June, 1992 and treated with 2-CdA in October, 1992. He is now back in the hospital with a tough infection. (Yes, he avoided doctors like the plague since 1993, so we don't know just
ow long the cells have been reforming.) I'm going to read some of these stories to him because he feels that he is alone with this disease. My comment is for everyone who has this disease to please force yourselves to see the doctor for checkups on a re
ular basis. Besides all of the trauma that our family is going through, he is in a lot of pain from headaches and fever. Now for the question: At the time he took 2-CdA, it was still considered to be a "test drug" and not accepted by the FDA. These st
ries that I am reading seem to be about new cases. Are there any cases of re-treatment with 2-CdA with several years of remission inbetween? Lou DiFinizio - 11/19/98 20:10:57 My Email:lou.difinizio@qntm.com
Comments:
Great Web site !! Glad to finally have an opportunity to share my experiences with other HCL survivors. My name is Lou DiFinizio living in Whitinsville MA. I'm 52, the father of two boys 26 and 28, married to a lovely woman (a nurse as well) and have b
en cured since June of 1992.
My storie is a bit different form others in that I was originally diagnosed in January of 1991 with Aplastic Anemia (a bone marrow failure of unknown origin), a disease which mimics HCL. The Anemia was diagnosed by my Hematologist and confirmed by a seco
d opinion with a completed of exhausting tests. I was treated with two courses of a serum (ATG) for the Anemia with no success. Finally in January of 1992, I was sent to Brighams and Woman's Hospital in Boston to discuss a bone marrow transplant, si
ce all previous treatments had failed. At that time I had two transfusions of packed red blood cells and had not identified a marrow donor.
Within a few days of the bone marrow consultation my spleen had enlarged. My doctor immediately sent me down for a cat scan (I was in the Hospital at the time). The test had confirmed an enlarged spleen. Another Bone Marrow test this time showed signs
f HCL. The previous 4 tests did not show the HCL, all toll I've had 9 bone marrow aspirations. I recall my Doctor saying, "Hope you have Hairy Cell Leukemia, because I can cure that". God knows that we had no success treating the previous diagnosis.
2CDA was the treatment of choice, but was still experimental in California. A call to the National Disease Center got an agreement to send the drug to Massachusetts for my treatment. I was the first person outside the initial drug testing in California
o receive 2CDA. I received the 24 hour a day, for 7 day treatment via IV in the Hospital and stayed another 10 days before they thought it was safe to send me home.
The 2CDA was the easiest treatment that I had endured throughout the ordeal. The two courses of the ATG were 6-8 hour infusions for a 10 day period. My worse Hospital experience was a course of an anti fungal antibiotic which was a 4 hour infusion (fr
m 10:00 PM each evening to 2:00 AM ). The Nurses fondly called the drug "Shake and Bake". This is because the first two hours I shook so violently from the cold that the bed moved, followed by 2 hours of the sweats that soaked the bed linens. 2 CDA was
ike a walk in the park !!
Within days of the treatment my white cell count was 200 with zero signs of an immune system. I received daily CBC blood tests and lab reports each morning. One faithful day the nurse reported I was up to 400, the next day was 600, then 800 and I was on
my way !! One strange thing occurred though, that is, I had terrible bone pain, which is a feeling of "aching down to your bones". Each day different parts of my skeleton would ache from by feet to my hands with the most pain in the areas with the t
innest bones. The doctor indicated that this was the barrow regenerating. By May I had finally returned to normal blood count levels with lots of strength and energy, I began to plan on returning to work after 5 months of disability.
Then one more chapter had to be played out !! On Mothers Day (May'92) I ran a temperature for 3-4 hours in the evening. This continued for weeks which required occasional Hospitalization, more Bone Marrow tests and a battery of tests to determine the o
igin of the temperature. My new diagnosis was "Fever of Unknown Origin", sounds ominous, doesn't it ? After eliminating all other possibilities it was determined that I had vasculitus (an irritation of my blood vessels) which was caused by the past year
various treatments, but generally believed NOT to be caused by the 2CDA. A course of prednazone (spelling ??) had me back on my feet with no more fevers after an addition 5 weeks of heart ache.
But it's all over !! All toll I spent 13 weeks off and on in the Hospital at no cost to me. My HMO was terrific through the ordeal and has been rated one of the top two HMO's in the country over the past two years.
In the fall of 92 it was determined that I had some permanent kidney damage, again believed not to due to the 2CDA, which caused an increase in my blood pressure. A simple medication keeps that in check.
I now see my Hematologist every six months where we review my blood count, an exam of my spleen and a long discussion on family and tennis. I'm in remission for over six years now (they don't seem to use the word cure…) and haven't had a bad day since Ju
e of 1992.
Regards, Lou Ashley238 - 11/16/98 17:33:48 My Email:Ashley238@yahoo.com
Comments:
I live in Hamilton Montana. Our school is studying about heart and blood diseases. Your diary gave me alot of imformation that none of the other stuff had. I want to thank you for sharing what you are going through.
Love Always,
Ashley238
- 11/15/98 04:58:26 My Email:lakhh@Megsinet.net
Comments:
I was 36 when I was diagnosed with HCL in 1989. As a mother with a twelve and ten year old, I was not the typical HCL patient. First a splenectomy, then interferon for a year, then 2-cda. It was administered by an iv line while I was an inpatient for se
en days. I didn't get a fever at all. When I went home I was very cautious and mainly stayed in the house till my counts went up. My family helped me get through that period of time. I also enjoyed the company of my little dog as I recuperated. I'm feel
ng completely normal today. I'm getting my blood tested yearly. I work full time in a outpatient surgery center. I go to the Health Club on a regular basis. I think I'm pretty fit, but I can't loose that extra weight I put on over my convalesence. I en
oyed reading about your experience with HCL. It brought back many memories. My experience with treatment went on from June of 1989 till 1992 when I finally refused a bone marrow biopsy to see if it was free of hairy cells. I had had it. If anything is
oing to get worse they'll have to pick it up with a blood test. There is a man that lives down the street from me that also has HCL. We don't even talk about it much--we live our lives just fine. Take heart everyone. The years I've lived with my diseas
have been very happy. My husband and I appreciate our time together very very much. If I didn't have this disease I wouldn't be the person I am today. Domica Triplet - 11/13/98 15:07:41
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How do people treat you while you have this disease? bernie - 11/09/98 01:50:11 My Email:berniex@aol.com fampharm@aol.com
Comments:
HI MARK
I AM A 60 YEAR OLD TENNESSEE PHARMACIST AND I HAVE JUST FINISHED
READING YOUR STORY ON THE WEB.
I WAS DAGNOSED WITH HCL ON OCTOBER 15TH, TREATED WITH 2-CDA FROM OCTOBER
19TH THRU OCTOBER 26TH. I THEN RECIEVED SHOTS OF
LEUKINE FROM OCTOBER 27TH THRU NOVEMBER 5TH. I WILL HAVE A BLOOD DRAW ON
MONDAY NOVEMBER 9TH AND WILL HAVE MY FIRST POST CHEMO BONE MARROW ASPIRATION
ON MONDAY NOVEMBER 16.
LIKE YOU, I HAVE THOUGHT BACK OVER MY LIFE TO TRY AND THINK OF THINGS THAT
MIGHT HAVE CONTRIBUTED TO MY ILLNESS.
WAS IT THE ARSENIC THAT I DUSTED BY HAND ON TOBACCO LEAVES WHEN
I WAS 12 TO 16 YEARS OLD-------WAS IT THE CHEMICALS I WAS EXPOSED TO
IN THE LAB THRU 4 YEARS OF PHARMACY SCHOOL---OR GASSES I WAS
EXPOSED TO IN THE ARMY IN THE 1960'S---OR THE 16 YEARS FROM 1965 TO
1981 THAT I SPENT WORKING IN A PHARMACY THAT I LATER LEARNED HAD
BEEN BUILT ON TOP OF AN OLD CITY DUMP---OR THE NEARLY 100 TRIPS THAT I WENT TO
AND SPENT UP TO A WEEK AT AT TIME IN THE NUCLEAR
CITY OF OAK RIDGE TENNESSEE, WHERE SO MANY PEOPLE ARE NOW
BEING DIAGNOSED WITH CANCER.
YES, ALL THESE THINGS RUN THRU MY MIND. YET MY DOCTOR, ONE OF THE BEST IN THE
BUSINESS, SAYS THEY HAVE NO IDEA OF WHAT MAY HAVE CAUSED THIS CONDITION.
I KNOW I HAVE RATTLED ON LONG ENOUGH, BUT I ENJOYED AND APPRECIATED YOUR
STORY, AND IF YOU HAVE TIME, WRITE
THANKS FOR CARING.
BERNIE BERNIERX@AOL.COM FAMPHARM@AOL.COM Susan - 11/07/98 16:15:32 My Email:susie@madriver.com
Comments:
I (26 yr. old woman)just finished my second round of 2CDA. After the first round in July of 97, I went into almost complete remision. I stayed that way for about 9 months, then the counts started to drop again. So, my doctor prescribed another round of
2CDA. That went fine except for the home health care company that did the home infusion - Olsten Health Services. They were very unprofessional and were not concerned about my needs as a patient they were only concerned with their needs as a company maki
g money. I highly advise against teir services. Nothing too shocking happened, it was little things that they did - not calling me when they said I would be receiving deliveries, trying to coerce me into getting an IV rather than a PICC line when the PI
C line wouldn't go in, a general disrespect for me as a patient. I live in Chicago and will certainly be making a complaint to the Illinois Board of Health. If they can do this to me I cannot imagine what they do to older people who are not as demanding
about their personal health care. A good lesson learned - be adamant about what you want when it comes to your health care and if you don't like the treatment you are receiving, find another health care giver and write a formal complaint. My doctor tells
me there is a 40-60% rate of people who go into full remision after a second round of 2CDA. I very much felt for the woman (from Canada) who wrote that she has no one to talk to about her disease. When I was diagnosed over a year ago, there was an outpou
ing from friends and family about how much they were there to support me, letters, flowers, phone calls. Now that I went out of remission, it is almost as if people are over the fact the I have HCL, but I am not over it. Other people are tired of talkin
about it probably and think that everything will be OK, I also sometimes feel like other people have a REALLY hard time talking about cancer with their close friends. Bob Phillips - 11/04/98 21:48:57 My Email:Rphill2@juno.com
Comments:
I was diagnosed with HCL 7 yrs. ago (the year I turned 40!)Had a spleenctomy was good for 1 yr.had interferon treatment for 2 yrs.Was the same thing as a diabetic giving him(her)self shots.Really not a big deal as the needles are quite small!Interferon ma
es you very tired and fatigued although I'm hearing theres medication now to conteract even this! Anyway I did well for an additional 2 yrs.and once again needed treatment. I had a relatively new treatment(Rd2 or some such thing) for only 5 days with an
nfusion treatment (a bag - like getting for gluclose)had to sit at the local cancer center for about an hour for this each day. Doing extremely well after 2 years!Dr. said it 'could' be a total cure! Praise God!Always remember Dr.s can diagnos,and they ca
they can treat, but THEY can heal no one! Only the touch of the MASTERS hand can do this. Knowing this we must seek His touch diligently while going through suffering with this disease.He indeed answers prayers - indeed! Please feel free to "E' me anytim
. Tracey - 11/03/98 19:37:45 My Email:jayne@uniserve.com
Comments:
hi...
I've been reading at this sight since I was released from the hospital last March of 98
but have never writen in. My story is a bit different then some I've read. Most people seem to have had home treatment, I was hospitalized in protective isolation for 3 weeks with a main line in my chest. When I was diagnosed I already had had night sw
ats for a month and was dehydrated with infection in both lungs and one ear. In all the experiance( as most of us can agree ) was not much fun. I was afraid for my daughter as I am a single mother and I had to withdraw from studys - I'm a degree student
in computer science - I lost about 10 senority places at work and my senior position. The up side to all this is that I seem to be in remission although I haven't gone for my six month biopsy ( yes I'm a coward, it hurts! ) I figure that if I'm still sic
I'll know about it, but my last counts were normal so I'm going to be positive. One of the hardest things is that I have no one to talk to about this, if I try to talk about it with poeple I know, they don't want to discuss it and many feel uncomfortable
with me afterwards so I'm afraid to tell anyone. So...
I thought I would finally write to your sight instead of being a silent reader.
Thanks for being a sounding board for me,
Picking up the pieces and getting back on track
in Vancouver, B.C. Robert Collins - 10/30/98 17:41:22 My Email:midas23@aol.com
Comments:
I am a 66 year old male. Starting 1991 I was diagnosed with and had treatment for lymphoma. The discovery of cancer was "accidental". I had no and have never had symptoms. My problem was a large cancerous mass that was engulfing my left kidney. After 2
years of unsuccessful - and sometimes life threatening - treatment, I went to NCI where they told me I had HCL, not lymphoma. I have never had an enlarged spleen.
My oncologist tried 6 months of interfuron without posituve results. In the spring of 1994 I took a 2-CDA treatment using a portable pump feeding the medication into an implanted Port-O Cath in my chest for a week. I had no adverse effects from the 2-CD
. My white count didn't even decrease. My next cat scan showed that the tumor had almost completely disappeared, and I have been free of HCL for over 4 years.
I would be happy to correspond by fon or email with anyone who might have a question about my experience. Annette Schild - 10/27/98 11:07:23 My Email:anet336525@aol.com
Comments:
My brother was in a horriable accident on 3/29/98 that left him paralized from the waist down ...It was while he was in the hosptal that he discovered that he also had hairy cell Leukemia.
They had to wait to start treament with the 2cda until his wounds and back surgery incision healed. He had his first treatment about 5 weeks after the accident while still in the hospital. The doctors told us that there was a good chance that he would ha
e to have a 2nd treatment,which he did about 2 months later. They recently did a mone marrow biopsy and at this point he seems to be in full remission
And as of this writing he is doing great I am happy to report. He and his wife took a trip this past weekend to Daytona and this Thursday night he is going to see Garth Brooks.
He has a lot of determination and a great attitude considering what he has been through and what he has yet to go through. He truly is my hero and the force that drives me on..I love you Steve.....you are an inspiration to us all. mark taubensee - 10/24/98 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. Now that you've read the most recent entries, read the archived comments.Volume 1 (the oldest), Volume 2 , Volume 3 (the most recent)
