Comments:
Rob--thanks for your comments and concerns. I will keep posting Carol's progress. I probably did not phrase my initial comment properly. We are dazed and confused by this whole thing. This hit us like a ton of bricks. We are very lucky to have the Dr. we have and we both (more importantly, Carol) are very comfortable with him. He answers all of our questions fully and explains things so we can understand. I (at this point) cannot foresee even considering a change. You are 100% right when you say we don't know what questions to ask and that is where this site has been so very very helpful. It has answered tons of questions and helped formulate others. I also think it has helped us get a clearer understanding of what lies ahead. Thanks and good luck to you and all! Mark H. Duncan Black - 08/19/99 20:48:09 My Email:DuncanBlack@compuserve.com
Comments:
Well first of all I would Like to Thank Mark for this site, I have found it very usefull. My story is as follows. I have had HCL since 1994, diagnosed when I went to the doctor because I thought I had 'flu. Had a splenectomy and that calmed things down un
il february this year when my neutophils went down to 0.42. I had 2 C.D.A. and found it to be not too bad. I had it thru an ordinary I.V. but in hospital . My neutrophils shot up within a couple of days. The only problem i had with the treatment was with
n antibiotic they gave me to guard against Pneumonia ,turned out I was very allergic to it and it put me back in hospital for 9 days. The recovery has been uneventful so far, and the doctors say my bone marrow is clear. How long that will last for ,as you
all know is anyones guess. Some research that I have read says that if you acheive C.R. in the marrow then there is a very good chance it will not come back(80 -85%) but only time will tell . I know they are using monoclonal antibodies in treatment for no
-hodgekins lymphoma and it seems to be quite effective. If anyone is contemplating a splenectomy,all I can say is that it worked well for nearly five years for me , without any extra infections, although I was 30 at my initial diagnosis. All I can say to
everyone is keep positive, it might not come back,if you do 10 years problem free then you are in the clear. If anyone wants to e-mail me to talk about HCL then feel free. Once again ,thank you Mark for this great site. Rob MacNichol - 08/19/99 18:02:19 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hi Mark (Hamilton), "While we feel very fortunate to have the Doctor we have we seem to walk out of the office in a dazed and confused state." ---- Besides the emotional issue of "having" somthing like this, you probably don't even know what questions to
sk, let alone get answered. Consider another Dr. after the treatment. I did. It's "your" HCL, don't feel obligated to the Dr. Anyway, your wife may not experience any problems with 2cda becasue they are monitoring it. Many people don't know about it
ntil they end up in the hospital. My wbc never went below 2.9 during and after the treatment! Looking back I could have stayed at work (physically). Menatally I don't think so. Plus it did not hurt to get plenty of rest. In fact, before treatment I g
t plenty of rest and my counts started going up! good luck, and let us know about your wife's progress, counts, experiences, etc. Rob MacNichol - 08/19/99 17:54:33 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hi Joe (C), The better you eat and take care of yourself, the better it is for your health (wherever you're at with this). PS: If you have any measurable success with anything let us know. Rob MacNichol - 08/19/99 17:50:49 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hi Rob (Cook), I like to be optimistic but that was not the question which was: --- "Does anyone know what percentage of hcl patients need further rounds of chemotherapy? Thanks- Albion" Word games are not my thing. Honest answers to questions are. An
way on an upbeat note, then, here's one that tops your 80 year old guy. There's a man that not only has HCL, but HIV too!...both are in remission and neither have been treated! Further, I am going to go to the gym and work out. Ouragh! Robert Cook - 08/19/99 17:27:48 My Email:rcook@nyls.edu
Comments:
RE: Rob MacNicol's comment below---
Another way of phrasing your comment would be that 80 - 85 % of HCL patients have NOT relapsed within 18-24 months. A bit more hopeful way of looking at it, I think. THIS month marks 18 months since I finished my 2cda treatments; my last checkup (late
ay)indicated everythin OK so far. My next checkup is just before Thanksgiving.
By the way, my parents in Florida know a man who was diagnosed with HCL 20-odd yrs ago (he was in his early 60's at the time). All they knew to do with him was remove his spleen and keep him in hospital for several months, after which time they sent him
ome. He's still going strong now, all this time later, and he's in his 80's. We all have ample reason to be optimistic. Joe C - 08/19/99 16:26:58 My Email:jcjr@webcombo.net
Comments:
I tried a case of Essiac,ordered from Calif, it came in brown bottles(8 to 12 oz,12 bottles?). I would heat up about two to three oz. per day and while I was hoping, it did not help my HCL. Now I am trying Enzamatic Therapies "Golden Spleen 500" hoping
t will make my spleen healthier. Whether that will help my counts or HCL progression, only time will tell! I also tried a raw salad,fruits diet for 3 months, and a real healthy diet for a year and that did not seem to help that I could tell, though I rea
an acct where an man in Africa or Australia cured himself with a raw vegetable,fruit based diet. It can t help but make your defenses stronger, go for it and good luck Everybody is different and maybe if you believe and pray it will work for you, it wil
!! mark hamilton - 08/19/99 11:21:22 My Email:mhamilton@jhancock.com
Comments:
My wife Carol was diagnosed with HCL on August 6, 1999 and began 2cda on Tuesday 8/17. For the past 6 years she had steadily declining blood counts which culminated in her 1st bone marrow biopsy in June. After an MRI, several visits, a lot of poking and p
obing she had her second bone marrow biopsy which confirmed the HCL. It appears that the HCL is confined in her bone marrow. While we feel very fortunate to have the Doctor we have we seem to walk out of the office in a dazed and confused state. I have to
say that most of what we have learned about HCL and what to expect has come from this site and all you wonderful people. Mark you are our hero!!! So far Carol is having no side effects from the 2cda but it has been less than 48 hrs so far. She is a bit
depressed this morning as it is her 46th birthday. Will keep posted on her progress. Question--Is there a questionnaire as we would like to participate? Thanks Rob MacNichol - 08/19/99 01:19:00 My Email:rmacnichol@ivc.cc.ca.us
Comments:
My Dr. says he won't treat HCL until one of the following occurs:---- wbc down to 1.0 ---- hemoglobin down to 10.0----- plateletts down to 100. ---- As I recall this is what he said. he also doesn't bother with Bone marrow Biops. until your at (at least
ne of) these levels. After treatment when your levels increase he still won't bother with the biop. His reasoning is that he will not treat anyone until there counts drop to what I've specified even if the biop shows HCL still present (they're trying to
ave your bone marrow by waiting untill the last possible moment to treat). This is Dr. Saven. Other Dr.s (the one who first treated me for example --Dr. Okun) said he wanted to wait because he was afraid I'd end up in the hospital with the neuto-somethi
g -low wbc- fever that can be deadly.... or I'd be real sick and he'd have to care for me, so he wasn't in a hurry to do the 2cda. However, my counts never went very low. It surprised the hell outta him! Made me real happy cause I figured my wbc would
hoot up to 5,6,7+. It only went to 4.1. Now it's 3.5 and the neutrophils are below the low mark. These make up 50-70% of your wbc and fight infection. Anyway, that's my speel on that, hope it helps. By Saven's rules your 2.9 is good. Rob lsatt - 08/18/99 23:11:43
Comments:
Hi all. It's me again...how low do most of your blood counts go before doing round 2 of 2cda? My white is down to 2.7 and I'm just wondering what other doctors let it dip to. Also...I"m going to start taking herbs (Essiac) and wonder if anyone out ther
has had any results--good or bad with herbs. Am looking forward to hearing from someone out there!!! Rob MacNichol - 08/18/99 01:37:20 My Email:rmacnichol@ivc.cc.ca.us
Comments:
I think sooner or later everyone has HCL again. Saven said a year ago his longest patient's been ok for 12 years. Joe C. (below) says 15-20% have it come back after 18-24 months. ---- I wouldn't know what to say about interferon. I've heard it bothers
ome people, and doesn't bother others??? One lady (below) mentions her blood went up after her second treatment, but I notice her age is/was 27. That may play a role. As for the Interferon, I'd get 2d, 3d, 4th opinions about HCL. Maybe your Dr. knows,
nd maybe he doesn't. One thing I found out is that the effects of 2cda are cumulative. So I'd like to shoot for the monoclonal antibody approach. if it works it'll save your bone marrow, but I have a suspicion it's like all other treatment...it's a mix
d bag. it may work great for some, and not much for others. Generally, if you're feeling good, enjoy it. I almost "bought it" in a car (almost had an accident) 2cda wouldn't have helped me much. Life's too short to wither away worrynig too much over th
s. My counts are heading downward, but it seems to be slow. The slower the better, cause I'm for the antibodes right now. If you can hold off I would. But I am not a Dr. so whothehellamI? ... to say much ... just opinion. ------ Rob
- 08/17/99 00:13:57
Comments:
Does anyone know what percentage of hcl patients
need further rounds of chemotherapy?
Thanks-
Albion Jackie Coslett - 08/15/99 05:55:29 My Email:R2J2inAZ@AOL.com
Comments:
My name is Jackie Coslett Im 52 years old. Ive had hairy cell since May of 96. Had 2cda twice,and after last bone marrow, Its back again. Dr .wants me to take Interferon everyday for the rest of my life. Not sure about that. I have felt great even th
chemo wasnt bad . Since I feel so good I dont want to start feeling Bad.My counts are very low and have been ever since my first Chemo. Lucky, no infections. If anyone has anything to tell me about interferon I would love to hear.Im not sure what to do
... PLEASE HELP. JACKIE COSLETT Rob MacNichol - 08/15/99 04:49:04 My Email:rmacnichol@ivc.cc.ca.us
Comments:
I just notinced a "glitch" in the message concernind the phase II trails. The dosage will be once(1) per week, for four(4) weeks. Rob MacNichol - 08/15/99 04:42:48 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hi Nancy!
I just got a copy of UPDATE from Scripps and see that Dr. Saven has been made Director of the Green Cancer Center. My wife has also handed me a copy of an article or report???…out of the UK concerning monoclonal antibodies for use in heart, transplants,
utoimmune diseases, and cancers to include leukemia. --------
It goes on to explain the process and so much more. It says their use is only going to increase, and "targets" such as CD20 will also become more available (identified). This means more uses for monoclonal antibodies. Thanks to the Genome project more
f these CD "targets" are identified all the time. It takes about 18-24 months to develop a particular drug, and because they are able to develop these with the use of mice that carry the human gene, the efficacy of the drugs are greater reducing the need
to give high doses. Also this has the effect of lowering the frequency of the treatments. --------
However, caution is advised, and everyone reacts differently with the disease and the treatment. I'd bet my bottom dollar that this will be the approach for HCL-V along with a host of other diseases. ------------
I talked with a Dr. Duer at the USC Norris Cancer Center about HCL statistics. They really sucked to put it mildly! Dr. Duer pointed out that, not only did he know these stats, but the Dr. who put them out (from England). He pointed out that in fact t
ese stats included data form the early 1980's which were no longer relevant. ------
The bottom line to all of this is that they are closing in on Cancer. Shortly, and in the next few years the "cure" will be much more prevalent for most (if not all) cancers as bio-medicine moves forward. The idea that I may need treatment again but tha
it won't damage my healthy cells is exciting. -------My next visit to Scripps is Oct 10th (Monday) at 8:00 AM, if anyone happens to be in the vicinity…… So who knows?…maybe we will see each other some time. (ROB) Nancy Atkins - 08/14/99 12:59:01 My Email:wratkins@hotmail
Comments:
Monoclonal trials? Yea! This new is gold for all HCL people. Yes, 2CDA is a wonder drug, but let's go further. Thank you Rob McNichol for posting this and the urls for Scripps, etc. I saw Dr. Saven and he is the EXPERT. I was happy/sad he got promote
administratively because I hope it doesn't take away from his HCL work.
Here's an amusing/whimsical story for us all. I started a masters degree program in library science at San Jose State Univeristy in California. I was diagnosed HCL May l997 and am doing well. To help the immune, one thing my Dr. said was to have fun, whi
h I find terribly funny because, What is 'Having fun'? I'm 49 yr old wife, mother, etc....and frankly going to school at an old age isn't fun. So here's the story. In a library class we all were grouped in the computer lab, three to a computer and the
rofessor said, "The topic is, Health sites on the Web, you have 45 minutes for your group to pick two health topic or disease, map sites, assess them, find support groups, etc. So of course our group was done in 5 minutes because I had HCL to offer. Act
ally the little group was two Pudgies, middle aged women, me and one other, and one apple-cheeked 21 year old. So I offerred HCL, and then the other Pudgie said, "Well, my son is manic-depressive so I've been to every site there is, in online support gro
p too...so another 5 minutes and we're done. We turned to the AppleCheeked girl and said, "Do you have any life crisis or major tragedy to contribute to this group exercise?" "No, everything's fine." "Give it 25 years; you'll come up with something." we
said. (Are you laughing?)
Actually I am a library story because in April of l997 the clinic said casually, "Oh....(yawn)...maybe you have HCL" so I went to my public library and looked in a 5 volume work in the reference section published in l989. It said, take interferon and die
in 2-5 years, 500 people a year, 100 of which are women. I slammed the book shut and said, "Ha, I don't have that but if I did I know I'd die." (Also fatalistic because my Mom died of colon cancer at 41). So when the diagnosis came through the telephone
sat in my bathroom knowing I was going to die. Bad Bad public library. My brother ordered medical abstracts off the internet for me, $100.00, Fed Ex, and only from reading dozens of pages did I think I might live. So information is GOLD, it is life, a
d libraries should never have outdated medical info which incudes all printed matter on diseases. After sincerely believing you're going to die it's all downhill. Say "Leukemia" to people, and I usually never do, and they probably think you're going to
ie. Stats are 27,000 get it, 21,000 die, not too cool at all. So it's a delight, a conceit, to actually have "an excellent prognosis". We were all AppleCheeked at one time in our lives, but with HCL we have new layers of wisdom.
Love to everyone. Nancy Atkins wratkins@hotmail
We'll all probably never meet each other, but what if our cars had a secret HCL or 2cda symbol on it so we'd randomly meet. Just a fantasy thought. It's odd having an obscure disease. John - 08/13/99 02:39:44 My Email:johna_nj@hotmail.com
Comments:
Been a while since I posted here... male, age 37, had 2CDA treatment exactly a year ago and am doing great.
QUESTION: We're thinking about having another child. Has anyone here fathered children SINCE 2CDA treatment, and if so, how soon after? We've already heard from one nice couple who had two kids after 2CDA, so there is hope! Anyone else? Thanks! rob MacNIchol - 08/10/99 22:03:34 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Well, I had a long talk with the Nurse who's title is the "Clinical Trails Assistant," Carrol Burian at Scripps. First... the area codes are going to change for Scripps from (619) to ,b>(858). So if you want to FAX, the number will be (858)554-6941.
I'm told that FAXing Dr. Saven should be done by your doctor. He won't respond to patients. And if your Dr. doesn't get a response ... I'd try a few times. I have a couple of names for the drug being developed so you can look it up, but it is all abou
non-Hodgkin's lymphomas right now. But you can get an idea about what it does, and who makes it. I use the search engine Alta-Vista, and Infoseek. Yahoo's got nothing as far as I can find. Type in RITUXIMAB or another name RITUXAN Here'
a site I found is at http://pharminfo.com/pubs/msb/ritux243.html... OK here's what I talked about concerning the trails. It will be a phase II study… this will see if "it" works on HCL. Phase I was dosage, that type of thing. .... there are seve
al criteria to be in the study. You must have been treated with 2CDA (and HCL is coming back), and be CD20+ (whatever the heck that means!) You must have been treated at least 6 months ago. There's more but they have to test for that or look at your bl
od, whatever. I think you get the idea, … you can't just walk up to the Dr. and say "Gimmy some stuff!" .... they are still working on the protocols for the testing and think it may be ready sometime in Sept. They will administer the drug 1/week for
weeks. Side effects are expected to be fever and chills but for a very short duration like it'll be over in a day or so????? but who knows...it's NEW. Names and numbers:
Carrol Burian (858)554-9375 she'll explain much. Paulette Geiger (858)554-8384 her title is Cancer Special Services and gets patients into the system (testing). Carrie Bryntesen (858)554-8564 She is the research nurse. .... I tal
ed with Carrol Burian for about 20 minutes about me, the 2cda, the monoclonal-thing, and she might be the one to speak with if you want to know a thing or two rather than Dr. Saven...who doesn't really chit-chat with HCL folks and sip on a soda all the wh
le. he talks to Dr.s only, I'm told. These other nurses will be more than sufficient if you need a good talking too! Especially Carrol. Carrol told me she had just finished reading over 300 cases of HCL and by the time she was done she thought she had
it herself! ... I know that one! ... I hope this helps if you want to contact Scripps ... I ought to get some money for advertising... HA! If I come across more I will enter it, and feel free to e-mail if you like, but I don't know much more than what I'
e said here. I do not mind pen-pals. In fact, I'm going to reply to Don Knox from an earlier e-mail. Rob Kristi Sommer - 08/09/99 22:08:25 My Email:kso6766357@aol.com
Comments:
Thanks for the diary of your treatment. It's great to know that 2CdA is helping others!
My dad has HCL and received 2-CdA in 1992. He will be 7 years in remission in September. He was originally diagnosed with cancer in the mid 80's and before he started normal cancer chemo, was urged by a lawyer to seek a second opinion in St. Louis, MO.
He went to Dr. Safdar there and it took him some research but, he was able to diagnose the HCL. Due to the lack of drugs and knowledge of HCL at that time, his spleen was removed and he received regular blood tests and transfusions as necessary. Not wan
ing to take a chance of receiving a placebo in test studies of penostatin, he opted to wait out additional treatments until they were released for public use.
My aunt in Texas found an article in a small town newspaper about HCL and a new treatment called 2-CdA and sent it to us. Dr. Safdar had been waiting for it to come out for public use and was able to get my dad. He was required to spend a week in the ho
pital while it slowly dripped. Afterward, he was to take it easy and had to go daily for shots to help build his blood back up for a week.
Not sure how long it was before the follow-up bone marrow test but, it showed that only a very small amount of HCL remained!
Dad is now visting Dr. Safdar only once every 6 months after going every 3 months for several years!
The experience was trying for all of us but, we truly believe that God performed a miracle with my dad being able to live for so many years before 2-CdA was available.
There is no known reason for a person to get HCL (or any cancer or leukemia for that matter) but, we do find it strange that of the original people that built in our neighborhood (previously an apple orchard some 40 years ago), many have had some form of
ancer or leukemia. One man 4 houses away even died of HCL after my dad's diagnosis but, it was too late when he finally went to the doctor and penostatin was not effective at that late in the game.
I'm so glad to know that 2-CdA is being used widely know and that HCL is considered when doctors are diagnosing patients!
Thanks for the web page and letting me share the story!
Kristi Sommer
kso6766357@aol.com Joe C - 08/09/99 18:13:42 My Email:jcjr@webcombo.net
Comments:
Hi Everyone!
I am interested in any info one might have on the new monoclonal antibody trial that Dr Savin may be starting in a few months. I am in the 15 or 20% of hcl patients who have hairy cell reoccur after 18 to 24 months of 2cda treatments(usually indicated by
a reswelling of the spleen,but in addition this last time my hemoglobin dropped from 13 to 8). So not sure about splenectomy,pentostain,or interferon I opted for 2cda a 4th time! I figure I will get 18 to 24 months of normal hemoglobin(12-13)which should
keep my energy level up. Thanks for any posts or info!
jcjr@webcombo.net Rob M. - 08/06/99 16:13:32 My Email:rmacnichol@ivc.cc.ca.us
Comments:
D. Albion & Don ... I really think most places are "up" on HCL as much as anyone else is. Austrailia is as good as any (my guess). UCSD is right down the road from Scripps and I understand the (a) company producing the upcoming monoclonal antibodies is
ut of San Diego. I would be surprised if many other places around the world/country(US) were not up on this. It's a stockmarket invironment investers are dying to make $$$$, and Dr.'s are excited about making a name, succeding in research and getting pu
lished. All I want is to *not* have cooties! Hummmmmm. HMO's have their moments. But I've headed away from them. I have Blue Cross prudent Buyer and CHAMPUS (military) as a secondary carrier. I wonder if Australia or any other British "oriented" cou
try uses a national health care plan, and how that measures up? Don Knox - 08/06/99 06:31:23 My Email:donknox@dynamite.com.au
Comments:
You can see my history in the letters page on my problems. September last year I was diagnosed with HCL-Variant which cannot be treat the same as HCL. I had my spleen removed in Feb of this year and it has helped. I went to see the Oncologist on Monday af
er a blood test on Friday. It was with fear that I and my wife, Franca, waited to see the doctor. Three months ago, he has promised "a long life" because with old age (I am 63 in September) the cells don't divide as quickly as in the "young" and that the
airy cells would only increase slowly.
The full blood count (FBC) results amazed the doctor. The white cell count had gone down - neutrophils had gone from 7.43 to 5.87x10^9/L (normal range 1.8 - 7.0) and the lymphocytes from 7.92 to 7.07x10^9/L (normal range 1.2 - 4.0). It really is a miracle
We will see the Oncologist in four months time. Don Knox - 08/06/99 06:30:54 My Email:donknox@dynamite.com.au
Comments:
You can see my history in the letters page on my problems. September last year I was diagnosed with HCL-Variant which cannot be treat the same as HCL. I had my spleen removed in Feb of this year and it has helped. I went to see the Oncologist on Monday af
er a blood test on Friday. It was with fear that I and my wife, Franca, waited to see the doctor. Three months ago, he has promised "a long life" because with old age (I am 63 in September) the cells don't divide as quickly as in the "young" and that the
airy cells would only increase slowly.
The full blood count (FBC) results amazed the doctor. The white cell count had gone down - neutrophils had gone from 7.43 to 5.87x10^9/L (normal range 1.8 - 7.0) and the lymphocytes from 7.92 to 7.07x10^9/L (normal range 1.2 - 4.0). It really is a miracle
We will see the Oncologist in four months time. Albion - 08/06/99 04:42:09 My Email:morgana6@home.com
Comments:
Rob-
I have not been going to Scrips, but rather UCSD
where my brother referred me...what a great facility. The Dr. I have been seeing is Tom
Kipps...he sees a lot of HCL patients and spends
most of his time in the Lab. I have definitely learned the difference between an HMO an a teaching facility.
D Rob MacNichol - 08/05/99 17:16:33 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Dr. David Albion! Leukemia from cats? Those Krazy Katz! I don't think so, but who knows. I came across a site (can't find it now) that mentioned gene abnormalities (or something like that) in folks with HCL. I think if we "get it" from something, it
as to do with us having a special sensativity to "it" because of some gene-like glitch. But as far as that goes anyones guess is as good as anyone elses. All my Dr.s say take a one-a-day vitamine, a "C" and an "E." Saven thinks it's all crap... this is
on the assumption that you eat well. You mentioned La Jolla, are you in touch with Saven yourself? PS: I decided to get "chatty" on this site Mark. If that's a problem let me know. And I'll just post updates. It seems more fun to chit-chat about this
than just drop in static posts, but your resources may be limited??... with archives and "space." --- Rob Rob MacNichol - 08/04/99 22:37:23 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Hey Mark! Good going on the bike. I'm running 3 miles MWF, and do weights twice a week. For someone who may be having a relapse I feel terrific! I love the heat. The hotter the better. Some of my best runs were in temps around 90-100 degrees and aft
r stuffing my face at lunch time...go figure. Anyway, it gets the fat off. I'm down to a 9+ minute mile.. slow, but for me at 51 it's good. Here's another site on antibodies, yada yada yada... http://cancernet.nci.nih.gov/cgi-bin/cancer-pat_show?fil
=pro11536.html&Country=USA Mark Taubensee - 08/04/99 09:42:59 My Email:dovelake@kiva.net
Comments:
I had my 4 month check up yesterday. My blood values look good. For the first time since my diagnosis in June of 1997, my platelets are in the normal zone. My exercise program continues. I've bagged the idea of running for now (too hot) in favor of in-lin
skating later since the county paved the road near my house. My bicycling program is right on track. I'm riding a loop of 15 miles about every other day. I'm getting stronger. I've been timing myslef on this route and recently I rode my best time. It is
efinitely encouraging. Just thought some of you might be curious about how things are with me at present. Dr. David Albion - 08/03/99 14:47:31
Comments:
...ps: For many years we have had a bevy of cats;
I took care of them, fed them, buried the ones
who died from Feline Leukemia. Then I developed Leukemia; no-one in my family(parents, brothers,
grandparents) ever had this disease. Don't laugh,
I say there is a possibility.....
Like I used to tell my patients, anything-
can cause anything.
Albion Dr David Albion - 08/01/99 23:26:09
Comments:
Just finished antibiotic thereapy today; I picked up 2 serious infections and had to have home services after hospitalization for 8 days. What a trip...first they kill ya, then they try to bring ya back to life. Everyone was great, tho...what a hospital..
like a resort(la Jolla, Ca.) Next couple of weeks we'll know if the chemo was effective...I was totally unprepared for the whole thing. Been taking acidophalus, some herbs, anti-
oxidant vitamins, and of course...vancomycin.
Also, taking excercise very slow.
Thanks and stay well everyone-
Albion
- 07/28/99 23:38:35
Comments:
More snooping. I'm sure you can call up clinics near you, I have yet to try..I'm *supposed* to be working here, not going off in the WWW :)))----------Scripps Clinic Home Page:---http://www.scrippsclinic.com/index.html---
Dr. Saven---http://www.scrippsclinic.com/doctors/dr1575.htm---Division of Hematology/Oncology---http://www.scrippsclinic.com/divisions/hemato/index.html---Information available on the WWW.---http://www.scrippsclinic.com/centers/greencancer/res06.htm---(I
aven't looked at all this yet).---Feedback (write to Scripps)---http://www.scrippsclinic.com/feedback.html---(I do not know how *much* information you'll get from this).----I asked for more info on Monoclonal antibodies for fighting HCL… we'll see what h
ppans.---Rob Rob MacNIchol - 07/27/99 22:23:11 My Email:rmacnichol@ivc.cc.ca.us
Comments:
I've been doing some www digging here's a sliver of info I came across:---------http://www.mediconsult.com/mc/mcsite.nsf/condition/leukemia~educational+material~MCOR-47ULNB------------
The tumor-killing component of a radioimmunotherapeutic agent is
usually a radioactive isotope of iodine or the metal yttrium, bound to
a monoclonal antibody. With their great sensitivity and fine-tuned
specificity, antibodies are well-suited to finding and binding to a
particular type of cell. A monoclonal antibody can be targeted to
features that are characteristic of particular types of tumor cells for
example, a surface component of cells that are growing and
proliferating rapidly. ----------------
So far, radioimmunotherapy has shown the most success against
cancers of the blood and lymphatic systems. "The main reason for
the greater effectiveness in these diseases is that leukemias and
lymphomas are very radiosensitive," explains Dr. Susan Knox,
radiation oncologist in the department of radiation oncology at
Stanford University Medical Center. "Leukemia and lymphoma cells
are less able to repair radiation-induced damage than are cells of
solid tumors." c john seattle - 07/27/99 02:54:58
Comments:
havent written for several months, but in case it
is useful to others, i was diag two years aga and
have been monitoring blood since.......sometimes
very risky, others above borderline.......doc says
likely developing over several years.actually
discovered when i tried to give blood to bank..i
ask why not treat with 2 cda now......he says that
the treatment puts one at sig risk by killing all
the cells and the risk of infection now is worse
than hcl...makes sense i guess and i continue to
live a normal life.....will continue to monitor
and let you know of sig change..lets beat these
fuzzy little guys....for us and for our fam Lois - 07/27/99 01:53:58
Comments:
Diagnosed w/ hcl in 96...2CDA ...now my counts are going slowly down. Is this how it goes until you need 2CDA again? The hairy cells have always remained in my bone morrow. Is this normal?? (for us HCL folks thatis? Thanks all!!! Joe Most - 07/25/99 02:38:59 My Email:jmost@email.njin.net
Comments:
I was diagnosed with HCL last October, and last April I wrote a message to this web site about that experience and about the plans for my treatment. I've been extremely fortunate: that treatment turned out to be simple, highly effective, and nearly free o
side effects. It consisted of one-hour IV infusions of 2-CdA once a day for five consecutive days in the chemotherapy room adjacent to my oncologist's office. Each infusion included some Kytril, an anti-nausea drug, and the doctor gave me a prescription
or a second anti-nausea medicine "just in case." (As it turned out, I didn't have to use it.) By the third treatment I noticed that my spleen, which had grown uncomfortably large during the previous months, had become significantly smaller. The only major
negative side effect I felt during that week of treatments was heavy-duty fatigue. It wasn't until about a week after my last chemo session that my blood cell counts started to fall drastically in response to the 2-CdA. At that time my oncologist told me
o start taking two prescriptions: an antibiotic as a precaution against possible infections and Neupogen to stimulate my bone marrow's production of new white cells. He told me to expect moderate fevers but that if my temperature ever reached 100.4 degree
he would have to admit me to the hospital. That didn't delight me, so whenever my temperature rose above 99 degrees I got very concerned. But I was able to keep it under control by monitoring it regularly and using ibuprofen as needed. Throughout this ti
e--during the chemotherapy and afterward--I maintained as close to a normal work schedule as possible. And now, a couple of months later, the happy result of all this: healthy blood cell counts and a follow-up biopsy showing no residual hairy cells in my
bone marrow. I know I've been extremely lucky, and I wish the same good fortune to all of you who are dealing with the distiction of having our rare disease. I'm so grateful for the advanced state of research on HCL and for the thoughtful care of my own d
ctors. And of course it would be impossible to overstate my gratitude for the love and support of my wife, children, family, and friends. Once again I want to thank Mark for establishing this web site, and I thank all of you who have contributed to it. It
certainly has been an invaluable resource for me. Very best wishes to everyone! Tom Miller - 07/23/99 16:27:16 My Email:sprig2@juno.com
Comments:
It has been about three years since I made a comment on these pages and it is time to bring things up to date.
I am one of the fortunate ones in that my HCL was detected early and the treatment was very successful. Diagnosed in Nov. 1992 and treated with Interferon for a period of 5 1/2 years with relatively minimal side effects. Blood tests in June 1998 revealed
no evidence of HCL in the blood. (no bone marrow test was made ) so stopped the Interferon treatments. About 6 weeks ago asked the doctor to perform a bone marrow biopsy to check for HCL there. Results were positive. We decided on 2CDA treatment immediate
y instead of waiting for the HCL to show up in the blood. The 2CDA treatment was completed on 7/20 ( the biggest problem was my activities kept tripping out the pump ) . The WBC was 3.8 on the 20th and expected to go down. Have a blood test scheduled for
he 30th to determine how far down and if other treatment is required.
Thanks for the web site. It has been very helpful to me and my family over the years. By the way I agree with an earlier writer, if you are taking Interferon,take it just before retiring for the day, it is a lot easier. pat - 07/23/99 13:52:05 My Email:okrueger@worldnet.att.com
Comments:
I am a 57 year old diagnosed in 1983 with HCL. Had a spleenectomy and a series of interferon with good results. Had a relapse in 1990, doctor said, I was not a candidate for any current treatments for various reasons. Left my position as a VP of a foundat
on (which was very stressful), and I felt had contributed to the reoccurrence. I have not returned to full time work, because I have trouble with extreme fatigue and complicated migranes, which cause me to have stroke like symptoms and trouble with expres
ing myself. I am active at my own pace and lead a visible life. My questions to all of you are: Does anyone know a doctor in New Hampshire that has a clue about this disease? Does anyone have similar symptoms? Does anyone else feel they are in a fluctuati
g remission, but because of symptoms cannot work full time? P.S. I also have hypothyroidism. I am glad I finally discovered all of you, since my GP Doc. does not understand, nor care about HCL. All of my past treatments were in Boston. Rob MacNichol - 07/20/99 20:41:54 My Email:rmacnichol@ivc.cc.ca.us
Comments:
Comments:
(Are doctors in general beginning to treat HCL in its early stages, rather than wait, as in my case.) ----- Rob: My current doctor (Saven) does not treat until one of the three counts hits a certain point. For example, the platelets must go below 100 - or
- the white counts go below 1 -or-the red counts go below 10 (as I recall - but you get the idea). -----------------------------------------------------------------------------------------------------------------(Does anyone have any information on the pe
centage of patients that require more than one round of treatment?) ------ Rob: I don't but it is not unusual to have HCL return. ------------------------------------------------------------------------------------------------------------------(Does anyon
know if HCL can lead to secondary cancers?) ------- Rob: The down side is "yes" it can, but the upside is, you're only at a slightly higher risk and they are always checking you on a routine bases. -------------------------------------------------------
----------------------------------------------------------(Is it possible to stay in remission for life after only one 7 day 2CDA?) ----- Rob: The longest Dr. Saven knows is 12 years…so far! No one really knows yet. I read one site where this guy not o
ly had HCL, but was HIV positive. Both were in remission and he'd never been treated for either! We all react differently to the disease and the treatment. -------------------------------------------------------------------------------------------------
----------------(So many unanswered questions.) ---- Rob: I'm interested in the outcome of the testing with monoclonal antibodies. I don't expect much, for some reason, but you never know. If this approach works it will be the best yet. I suspect that
f it does work, it might be in conjunction with 2cda afterwards… but you never know. It could result in a complete cure for HCL, or if not HCL then for some other cancers. I believe this approach is designed for low grade lymphomas (which HCL is, but I
m not sure it's exactly for HCL, period) Researchers are closing in, however. I've been punching around on the WWW with "monoclonal+antibodies" in Yahoo, and with other search engines. If anyone hits a specific site post it here. Mostly it's about oth
r things beside HCL, Non-Hodgkin's Lymphoma, for example. C. Singer - 07/19/99 16:43:06 My Email:psinger@interlog.com
Comments:
Thank you for this very supportive website. When my husband was first diagnosed with HCL 2 years ago in May '97, he had the 7 day , 24 hour infusion pump of 2-CDA with the major side effect being a neutropenic fever which put him in the hospital for one
ight and on 10 days of home IV heavy duty antiobiotics. Followup blood tests and Bone marrow was fine until last week, when platelets continue to be a little low and worse, the WBC is down to 1.6. So another Bone Marrow this morning and we will know nex
steps in a few days. Reading all these letters is very encouraging and most interesting. Until I read these histories, I didn't know the 'personal stories' of so many people with more than one treatment, so the prospect of a relapse and more chemothera
y is a little less frightening! As well, there are a lot of interesting ideas with respect to treatment options which give us some good questions for the doctor. Best of health to everyone of you! Susie - 07/18/99 17:59:02 My Email:susie@projectharmony.org
Comments:
I am a 27 year old female, diagnosed with HCL in June of 1997. Had a round of 2CDA in July of 97 and another round in Novermber of 98 due to falling blood counts. My most recent blood test had a WBC of 7, which is really amazing because my WBC hasn't lo
ked this good in literally years. When I saw the results, I checked the name on the sheet of paper to make sure they were my results. Indeed they were. Hope lives! It seems like I am healthy again after two years of having HCL. Now its just alot of e
ercise, vitamins, trying to live stress free and no more big city living for me! Peter Anello - 07/18/99 06:30:49 My Email:thecook@safemail.com
Comments:
RASH after 2CDA....I forgot to mention that I too, was covered head to toe in a rash (very itchy) after the treatment. It started just minutes after the 2CDA was removed/flushed thru the port. My Doctor figured it was an allergic reaction to the antibio
ics, but I know it was the 2CDA. What little bit of the poison was left in the pouch was flushed into my body to purge the pump....and it was then that I broke out. I had been on the intravenous antibiotics for 4 days without a problem. The rash, which
cleared in a few days, was well worth the final results.
Peter in Morgan Hill, CA Peter Anello - 07/18/99 06:04:07 My Email:thecook@safemail.com
Comments:
Another success story. I was diagnosed in 1996 with HCL and successfully treated with 2CDA. I did spend 4 days in the 'pital and my platelets are still at the bottom end of normal, but other than that I'm as good as new. I work out 3 days a week and fe
l great. I noticed some other patients who have had 2CDA with esophogal problems/complaints, and that may explain why I have this constant hoarse voice and dry throat. Does anyone now of a treatment for this after effect?
Feel free to write if you want to share experiences.
I'm a married white male, 46 years old, work in law enforcement, spent 3 years in the military 1971-1974, and don't have a clue as to how I could "catch" cancer.
Now, I take all kinds of vitamins/anti-oxidents and no relapse as of now.
Thanks,
Peter in Morgan Hill, CA Shirley Mangrum - 07/15/99 18:30:33 My Email:ray.shirleymangrum@worldnet.att.net
Comments:
This is for Mary Anne regarding her comments yesterday. I decided to answer here so as to inform others who may have had problems following treatment. The fungal infection in my esophaogus was extremely painful, like a heart attack, and it was difficul
to swallow, but I did not have any hoarseness. Chemo does effect us all differently and I would like to know if others experienced infections and especially HIVES. The hives were horrible and lasted for months. I have a question for you Mary Anne...
hy were you treated so quickly? Were your blood counts dangerously low. The day I went into the hospital my platelets were 80,000,,,my white count 1.7 and my hemoglobin was 11.1. My doctor at first said it might be 5 years before he would recommend tre
tment. As it turned out it was only 3. Are doctors in general beginning to treat HCL in its early stages, rather than wait, as in my case. Does anyone have any information on the precentage of patients that require more than one round of treatment? Do
s anyone know if HCL can lead to secondary cancers? Is it possible to stay in remission for life after only one 7 day 2CDA? So many unanswered questions. I welcome feedback from any of you. I waited until one full year had gone by before making a stat
ment here. I wanted to make sure that the treatment worked. We all have had experiences that can be of benefit to others. This is still a rare disorder and we need each other. Contact me here or at my e-mail address and I will respond. Mary Anne have
you asked your doctor about your hoarseness? Mary Anne Rouse - 07/15/99 05:42:51 My Email:Rrousefam@aol.com
Comments:
To Shirley, who wrote today: I am a 51 year old female, and our cases sound identical, except we didn't wait any time at all for the treatments to begin. It has taken me months to feel human again, 6 to be exact, and I am returning to work later this mo
th, after 6 mo. disability. What interested me was your esophaogeal infection. Did you have hoarseness? I have had chronic hoarseness for months now. You may answer me about that infection at my email address, or here.
Best of luck to you. Mary Anne Rouse Shirley Mangrum - 07/14/99 18:19:32 My Email:ray.shirley mangrum@worldnet.att.net
Comments:
I found out in July of 1995 that I had HCL. I had been extremely fatigued and stayed sick with colds, etc. My family doctor was concerned because my blood counts were all well below normal and sent me to a specialist. After all of the blood work and bo
e marrow biopsy was completed, I was told that I had HCL but that it would be perhaps 5 years before I would need treatment. I had a CBC done every 4 weeks and a physcial every 3 months until last year. On June 15, 1998 I was put in the hospital for t
e standard 7 day, 24hours per day, 2CDA treatment. I was in the hospital for 12 days due to high fever and extremely low counts. My white count dropped to 0.1 (100) and my platelets to 20,000 and my hemoglobin was 7.1 at its lowest. I was very weak and
it took me several months to feel human again. I had several complications, such as servere hives and a fungal infection in my esophagus. All of this took time to clear up. My counts built up slowly but once they started going in the right direction, I
felt wonderful. It has been a little over a year since I returned home from the hospital. My doctor continues to do a CBC every 3 months. As of this writing my white count is 8.5, my hemoglobin is 14.1 and my platelets are 346,000. I have not had anot
er bone marrow biopsy since the 2CDA and my doctor does not think, at this point in time, that it is necessary. Should my counts start to drop, perhaps he would to one. I feel very blessed as I have had a year with no sickness. I don't know anything a
out the new treatments that I just read about on this site, but should I ever need information I will know where to look. I pray that all who face HCL and the treatment will do as well as I have done. I praise God for his grace and mercy and for doctors
that know how to treat us. By the way, I am a 61 year old female. I would be glad to hear from any of you.
Thanks, Shirley Rob Walker - 07/08/99 17:07:54 My Email:robw@synnex.com
Comments:
I am 36 and was diagnosed with HCL on St. Patrick's day (1999). I underwent my first 2-CdA treatment in early April. My infusion was different than most: 5-days at 2-hour infusions each day. No catheter, no pump, easy as pie. I suggest ANYONE loo
at this option rather than the 7 day / 24 hour pump infusion method.
After 10 weeks, my WBC counts never rose above 0.3 and the doctor decided to do another biopsy/aspiration to determine if the HCL was still in my bone marrow. It was. I went through another round of 2-CdA (same infusion interval as last time) and after
4 weeks, I've seen my WBC counts over 2.0, platelets are normal and hemogloben over 13.
On the road to recovery! Good luck to all and feel free to email me at robw@synnex.com if you have any questions or want some of my experiences to aid in your recovery.
Take care,
Rob
- 07/08/99 17:02:36
Comments:
2cda is out dated?
You may like this post, then again?
I went for my 3-4 month checkup yesturday. And As I have practiced in the past, I report on it here. My blood counts seemed to have dipped slightly. Dr. Saven said it's too small a dip to know if my HCL is coming back (I was treated in Feb 1998). Of co
rse, they'll watch and if it continues down I'll do the Bone marrow-thing.
It is not unusual to have HCL rear its ugly head. However, something unusual happened on this visit. Dr. Saven said "if" I need more treatment (I think he knows if I do or not - but holds back - no rush) I'll have a choice with something new!
I asked about it. He said it's an immunotherapy called monoclonal antibodies. He is "working up" the paper work right now for a clinical trial. It might not work, but then again no one knew about 2cda until they tried it.
The difference? 2cda can damage healthy bone marrow. The Monoclonal Antibodies only kill the cancer cells. He believes there's about 50-85% chance of a partial -to- complete remission. But who knows.
Anyway, he said if I decide to go with the new treatment it would be free becasue I'll be in his study. If you are interested, wherever you are approach the subject with your Dr. I'm sure that other clinics will be in on this (Mayo, for example)...
At least we can help science push the envelope a little further and perhaps benefit from it ourselves.
Finally, he said if the Monoclonal Antibody approach doesn't work, you've lost nothing, you can always take 2cda.
An aside note. If anyone is suffering from Cronic fatigue syndrome, it appears CMV cytomegaloviruse (very common in humans) can act up when the immune system is low (as in cancer patients) they are also working on this problem with monoclonal antibodies
(And this is *pure* speculation on my part... concerning exactly what's happening with all of this).
I am looking into this myself. I tend to exercise then get tired for days at a time. It seems *not* to be caused by the HCL. But! I do have antibodies showing the I have been exposed to CMV a form of herpes that probably 80% of the population in the U
carries.
Back to HCL:
I think, of course, the longer you can wait on HCL treatment the better. That way the Monoclonal antibody research will yield a clearer picture, and you may save your bone marrow from needless damage.
That's my take on my last visit to Dr. Saven. Have a nice day. Joe C - 07/07/99 13:15:09 My Email:jcjr@webcombo.net
Comments:
Subject: A new,better way to receive 2cda. Ask your Dr. about the Italian study(I'll try to get the resourse it was published in)where the patient goes in for two hours once a week for a total of six weeks to receive 2cda via iv. Since you dont have a 24
7 iv line and pump to deal with you have no problems taking showers,going to work,i.e. and most other normal activities. I was weak and a little nauseated the first day of treatment, but except for general fatigue, have felt pretty good after the first d
y. AS I recall from an earlier treatment, I may need to take some time off after the 5th or 6th treatment due to increased fatigue and the evening fevers associated with the hairy cells being killed off. Since I have relapsed three times I will problably
try a second course of treatment in 2 to 3 months after my counts recover in an effort to eliminate the stubborn residual disease that may be hiding out in my marrow or spleen(or some other obscure area of my circulatory or lymphatic system. Good luck an
improved health to all! Mark King - 07/07/99 00:27:51 My Email:markking@gridusa.net
Comments:
Hi every one sorry its been so long since my last entry but things have so busy, all in a good way. I was treated in aug. of 98 for 2nd time, recovered quickly and have been kickin butt since. I finished my body transformation contest with dramatic result
. In 11 weeks I went from 27% body fat to around 7%. I'm building my 13th convenience store now and am playing alot of golf. I shot a 70 a couple of weeks ago in a local tournament and bogeyd the last 2 holes, still took everyones money. My band is playin
a couple times a month and we recorded our first CD in December. I have been so busy that I forgot my last doctors appointment. When I did get to see him he said my counts were great and that I was the healthiest cancer patient he knew. Good luck to all
ho are going thru 2cda , GET WELL SOON Mark Mark Taubensee - 07/06/99 13:11:05
Comments:
To all members of the HCL Support Group: Thanks so much for taking the time to write patients with questions. I get many emails of thanks from them that I feel you should share in. Joc C - 06/27/99 17:27:47 My Email:jcjr@webcombo.net
Comments:
Subject splenectomy for 2cda relapses: An email was forwarded to me from Chriso of this list: It related that Dr Savin of the Scripps Institute had theorized that when 2cda relapses that the spleen could be blenderizing red, white and platlet blood cells
thus causing low counts. Chriso is going ahead with a splenectomy. I am going to hold off a while and try Enzymatic Thearpy's "Golden Spleen 500" and some Chinese Herbal medicine. Hairy Cell paitients seem to do pretty well after splenectomy and some expe
ts feel that the 2cda may take better after the splenectomy if the patient had an earlier relapse. That said, I discovered several uhappy campers(who did not have hairy cell) who regretted having their splenectomies due to increased colds and infections.
Their stories can be found at an interesting "art site" where as a coincidence patients who had splenectomies have made comments: (http://ftp.mcad.edu/piotr2/donations/InputMenu.html) If you have had a similar tratment experience or any comments, please
email and good luck and health to all! Bill Davies - 06/24/99 22:17:04 My Email:bdavies@direct.ca
Comments:
Hi. I am a 51 year old male living in Vancouver, Canada. I have been a regular donor at the cell seperator unit for persons undergoing leukemia treatment. On June 17, 1999, I went to donate. The next day I got a call saying they had a problem with my bloo
readings and could I come in and give a new sample. I did that on the 22nd. Yesterday I got a call from the hematologist saying I have HCL. I have started trying to deal with the news by first being practical and making the appointments and trying to pla
the next few months. This website has been a LIFESAVER. Possibly literally. Mark, where ever you are, thank you.
Bill David Hallgarth - 06/22/99 23:18:50 My Email:dhallgar@hotmail.com
Comments:
After being misdiagnosed with PNH for over a year
with my health rapidly declining, I went to the National Institute of Health at Bathesda, Maryland. They correctly diagnosed the HCL, but of a non-typical type which they said made it difficult to diagnose. They recommended I see Dr.
Koller at MD Anderson in Houston, Tx as he is conducting clinical studies with HCL. After the many blood test and marrow biopsy he confirmed the HCL, typical and relatively easy to put in remission with 2CDA chemotherapy. I have been on neupogen for the
ast six months as my immune system had failed. Two points that Dr. Koller shared was to insure a Serum Interluken II receptor blood test was done prior to taking chemo
to establish a base line and another done six weeks after chemo, he said mine would be in the thousands prior to chemo and after should go down to less than a thousand. It is an indirect way of measuring the HCL level thru a simple blood test rather than
aving another marrow biopsy. Also he liked using neupogen during chemo as it should
help curb infections. He also mentioned a new drug
called Rituxibac(spelling) that is being tested on refractory HCL, refractory meaning other treatments have not worked well.
My local doctor has me scheduled for treatment, 2cda next week, a five day stay in hospital which
should go well.
Thank Goodness for Mark and all the support folks
for their email. David natalia c.perez - 06/17/99 04:33:47 My Email:oliviap@hotmail.com
Comments:
How accurate are federal prisions as to treating patients with hairy cell? My husband was diagnosed with this disease and is currently serving a 20 year prison term. He is now in a medical institution in Rochester Minnesota. Im concerned becuz I feel he
wont't get the right treatment. Is there a possibility that he gets cured after just one treatment? julia - 06/09/99 16:37:27 My Email:superj@gmx.de
Comments:
Hi, my mother- in -law was diagnosed with HCL about five years ago, was teated with Interferone but didn't respond too well. She then found an article about 2cda by accident and was one of the few patients who were treated with it in Germany.
at the moment she is undergoing the second 2cda teatment and we all hope everything will be fine.
Now, my questions is who has done a second 2cda treatment, how do you feel and how much time was between the first and second treatment? Don Knox - 06/09/99 02:47:04 My Email:donknox@dynamite.com.au
Comments:
I will be 63 in September 1999. The diagnose of Hairy Cell Leukemia - Variant (HCL-V) was, like most leukemia, more by accident than good medical management - weight lose, night sweating and grossly enlarged spleen. HCL is very rare (600 cases a year in U
), while HCL-V is rarer again. Both HCL-V and HCL show hairy cell structure in blood samples under the microscope but there are characteristic differences. A lymphocyte marker, CD25, is mentioned in the literature as being the differentiator between HCL (
D25+) and HCL-V (CD25-). The rest of the medical literature available on the net on HCL-V is very depressing and supports the conclusions that DCF and 2-Cda are ineffective in the treatment of HCL-V. I had three courses of chemo (Chlorambucil/Prednisolone
to reduce the size of my spleen. I decided to do a splenectomy, which was under taken in Feb 1999. The spleen weighed 1.4 Kg about 3 to 5 times the weight of a healthy spleen. Since having the spleen removed, I feel great but the blood test in April stil
shows some HCL-V activity. I now have an under-active thyroid and prednisolone-induced diabetes type 2. There must be others out there who have HCL-V. Please contact me. Marsha - 06/07/99 03:34:15 My Email:lakhh@megsinet.net
Comments:
Hi, I'm writing in regards to GI upsets from 2cda. I had 2cda in 92 and I just finished another course of it the first week of April. (I am now a 46 year old mother of two grown children.) After my first course I had what I described as a "nervous stomac
". I wasn't really in much distress but finally I had it so much that I was worried I had an ulcer or some other ailment that necessitated treatment so I did complain to my doctor. He ordered an upper GI test and it was negative. I was relieved and the
symptoms gradually went away. After this last treatment with 2cda my symptoms were worse. I have pretty much cut out drinking milk, eating cottage cheese, large meals, and large amounts of red meat. I think things have improved. I still have queasiness
n occasion but not the painfull cramping I was having. I am trying to be patient hoping it's a side effect that will disappear over time. I did take some pepcid once and a while. I think it helped but not for long. Otherwise my counts are good and I'm ba
k to work part time. I'm not completely back to my normal energy level but I can tell I'm getting closer every week. A.R.E. - 06/06/99 06:36:27 My Email:NONE
Comments:
I AM A 37 YEAR OLD FEMALE . I HAVE BEEN DIAGNOSED WITH HCL . THIS WAS ABOUT THREE YEARS AGO. I RECEIVED THE 2 CDA CHEMO AND THE NUPEGEN SHOTS .I SAW DR. SAVON AS A SECOND OPINION,MY ONCOLOGIST DR.HAZEN ADMINISTERED THE CHEMO . DR. SAVON APPROVED ALL THE T
EATMENTS AND I AM VERY HAPPY WITH THE RESULTS. I ALSO SEE DR HAZEN EVERY THREE MONTHS . I HAD TWO BONE MARROW BIOPSEIS AND AT THIS TIME JUST GET MY CBC COUNTS DONE. FOR ABOUT SEVEN YEARS I ALSO HAVE BEEN VERY SICK WITH G.I. PROBLEMS I WAS WONDERING IF AN
ONE OUT THERE HAS THESE SYMPTONS I HAVE SEEN MANY DOCTORS FOR THIS AND NO ONE KNOWS HOW TO TREAT MY SYMPTONS THIS HAS TAKEN THE JOY OUT OF BEING IN REMISION FROM THE CANCER. I HAVE ALSO BEEN HYPOTHYROID FOR ABOUT SIX YEARS AND KNOW AM HYPERTHYROID WIT
A GOITER WHICH I WILL BE GETTTING SCANNED IN THE NEXT FEW WEEKS. '' ARE WE HAVING FUN YET'' WELL ENOUGH OF THE NEGATIVE STUFF AS FAR AS THE CANCER IM DOING JUST FINE . AND I KNOW I WILL BEAT THIS OTHER STUFF ITS JUST A MATTER OF TIME. I WISH EVERYONE
ELL AND HOPE ALL OF YOU IN YOUR FIRST FEW DAYS OF TREATMENT WILL KNOW SOMEONE CARES Mike - 06/04/99 00:00:34 My Email:terradyn@swbell.net
Comments:
Hi ya'll! My name is Mike Johnson and I'm 36 yrs old. I was diagnosed with HCL on May 2. Prior to that, I had no idea that I was sick; my annual job physical revealed low white blood and platelet counts. The past month has been different, to say the l
ast. I had a Groshong catheter installed in my chest, and then I did the 7-day continuous treatment with 2-Cda, which was pumped in through the catheter. I've been "recovering" from the chemo for the past 2 weeks. I was pretty sick the first week, but h
ve steadily improved since then. I've been going in twice a week for blood counts. My counts are still real low, but I understand that's usual with 2-Cda. Overall, it hasn't been too bad, but I'm ready to lose the catheter and get back to my "normal" s
lf. I've spent the afternoon reading everybody's stories, and I think they're all great! dr dave - 06/03/99 02:35:52
Comments:
Thank you everyone for your comments/stories/advice. I will be in touch once my treatment is underway; just wanted to mention,
my Histologist, a man of about 70, has never seen
a case of HCL before, hence his inability to diagnose it.
Stay well all-
DD dr dave - 06/01/99 23:18:07 My Email:morgana6@home.com
Comments:
Hi Rusty-
Thank you for your encouraging letter. In some ways this thing is a bummer and in some ways its fortuitous to have a type of cancer easily treated.
The hemotologist I went to originally here in San Diego told me, and he is man
of about 70, many years experience, that I am the only case of HCL he has ever seen.
Thank you all who sent comments/stories/suggestions. I do appreciate it and will briefly chronicle my experiences once treatment is underway.
stay well-
doc dave Tony Garofalo - 05/20/99 03:20:17 My Email:volov960@prodigy.net
Comments:
I found out I have HCL by accident. I had a servere nose bleed, went to emergency and was told by the attending doctor to make an appointment with my own doctor as soon as possible. I did as I was told and I was refered to the University of Chicago. Docto
s there confirmed I have HCL. This was 10 years ago and I am now 62 Years old. I have been very fortunate to date. I go every 3 months for blood tests and once a year to U of C. I've never required any treatment and for the past 2 years my blood counts ha
e been actually improving. My doctor can't explain it and tells me to just keep doing what ever it is I'm doing. I just got over a long case of pneumonia. I had to take 3 courses of antibiotics. I was very sick for 5 weeks. I was told by U of C and my doc
or that pneumonia was something I didn't what to have to battle. I did get a pneumonia shot 3 years ago. Obviously they are not full proof. I was very lucky. after 8 weeks I'm finally getting back to normal. I have to have my blood checked every month fo
the next 3 months to make sure the HCL hasn't started to affect my blood counts.
For all of you out there with HCL, there's hope and I'm living proof. For 10 years I've had no symtoms and no treatment. I hope each of you become as fortunate as I've been. Dr. Golomb at U of C is a real class act and I would recommend him any time. He p
t my wife and I at ease by telling us what HCL is and letting us understand what I had to deal with and how.
Be glad to do what I can to help.
Tony Garofalo
volov960@prodigy.net Chris Orr - 05/19/99 15:05:04 My URL:http://widowmaker.com My Email:Chriso@widowmaker.com
Comments:
Hi everyone! My name is Chris and I was diagnosed with HCL in December of 1994at age 37. I have had three treatments with 2CDA (piece of cake)and have generally felt fine. I have always been optomistic as all the literature suggest HCL can be easily tr
ated with a number of treatment options. I had good responses from treatment. I have had three bone marrow biopsies that showed no sign of HCL (1996, 1997, 1999). My problem has been that my WBC usually stays around 1.0 and my platelets between 70k and
100k. In 1996 one doctor mentioned that my marrow was 35% cellar and it was described as hypocellar. My latest marrow now shows 10-20% cellularity and my blood counts are trending downward slowly. My doc says hold tight and see what happens. I'm not re
l comfortable with that strategy as I'm not a doc but I do understand numbers and mine aren't good. I'm doing all the research I can and I have found this sight to be very helpful and encouraging. I plan to examine splenectomy and bone marrow transplant
options. From what I've learned, splenectomy will probably raise my counts but won't change the process in my marrow. Has anyone out there ever had a marrow or stem cell transplant for bone marrow failure caused by hairy cell leukemia? If so I would li
e to hear from you. I'm going to a bone marrow unit to get information to see if this is a last resort option if my marrow quits working. Hang in there everyone. Chris Joe C., Jr - 05/19/99 12:46:45 My Email:jcjr@access.webcombo.net
Comments:
I have enjoyed reading about the experiences that so reminded me of my own experiences. By the way, when I was first diagnosed I didnt have a very good health policy. Being self employed, I was able to get a part-time job with a large national company,w
rk 20 hours a week in the evening and get great health benefits, not even a one yr preexisting waiting period! I havent abused the system though and worked for a year before my condition necesitated treatment. I am interested in knowing if anyone has had
a similar experience to mine. I have had three 2cda treatments over a six year period. Usually I have good hemoglobin(12 to 13) and low wbc(1.9 to 2.9) and low platlets(19 to 40). Recently my hemoglobin dropped to 8 and my wbc to .8!,one week long bad so
e throat followed,antibiotics prescribed now ok except for heomglobin related fatigue and worry about another virus due to low wbc. My Dr and I are discussing penostatin vs interferon vs splenectomy basically in that order of preference. Anyone have thei
own experiences or advice? email jcjr@access.webcombo.net Pat in Columbus - 05/17/99 05:37:16 My URL:http://www.aol.com My Email:PandBat203
Comments:
Mark, it's been a while since I've checked your
pages. Wow, have you grown. Congratultions!
When I contacted you before I was VERY concerned
about my 7l year old husband who had untreated HCL
for over l0 years (that we know of). His
hemotologist/oncologist routinely
checked his blood counts, but because he was
asymptomatic and felt normal, only had a cold
about once a year, he did not want to give him
chemo. I was concerned about his l5 1/2 year old
bypass and knew it couldn't last much longer I
wanted Bill to be prepared for any additional
surgery he might need, and I thought the chemo
would prepare him for treatment, if he had a
recurence of the heart problem. His H/O said
he would treat him as soon as he heard from the
heart docs that they needed to do something
invasive. However, he needed at least two months
to prepare him for any heart surgery. His
internist, who was keeping tabs on the heart
problem, said he had a stress test every time he
swam,( which was non stop for a mile), two to four
times a week. That seemed reasonable, but the
angina returned three weeks ago. He had an
angiogram, and couldn't have angioplasty and a
stint because of the nature of the occlusion of
the heart arteries. With platelet count of 59, WBC
of 2.4, hemo of 9.0
he had his second bypass last week, a six hour
surgery because of having to remove old scar
tissue, old wires, etc. Also during the surgery
his pacemaker kept shorting out as they cauterized
him, and THAT was a problem. They replaced it
before he left the hospital. All has worked out
very well and Bill wants to get back to swimming
as soon as he can. He's doing fine, except for a
low WBC 1.4 and from what I read on your pages
that could be a worse. Bill has a VERY POSITIVE
ATTITUED. He ALWAYS seen the half full glass,
NEVER the half empty, and this has served him
well. We would like to hear form any of you,
particularly those who have not had chemo. We
know about 2cda, but not the drug that begins
with a p.. Best of luck and prayers for all of Greg Swanson - 05/12/99 03:01:47 My Email:Gregswan@aol.com
Comments:
I have to congradulate your group on your collective comments. I am a physician, who had the rather unfortunate experience of diagnosising my mother with what is likely HCL. I will here state categorically that it is much more comfortable on the inside
f the white coat. A call from my mother, complaints about bruising, a CBC showing pancytopenia and a BM showing shaggy cells have made me, an otolaryngologist (ENT Surgeon)interested in something below the collar bones. In talking with my colleagues in
eme/Onc I have gotten an idea what the treatments are. In reading your comments I have gotten to see what most doctors don't see, or, what is more likely, don't want to see, the emotions, hope and fears of the people we have treated. You give me hope, y
u give my mother hope. Thank you Robert Cook - 05/06/99 14:35:09 My Email:rcook@nyls.edu
Comments:
I am a 43-yr old male. In January 1998 I was doing push-ups at home on a Saturday afternoon, and upon finishing one set of 30, I stood up and noticed a blurry spot in my right eye. It had not been there before I started the push-ups. I rubbed my eye se
eral times, but the spot remained. After a couple of days had passed, the
blurry spot was still there, so I went to the NY Eye and Ear Infirmary for an examination. After
checking my eyes, and hearing my description of the events surrounding the spot's appearance, the
doctor told me that, first, the spot was due to
bleeding into the eye, and there was, in fact, bleeding in both eyes. In my left eye the bleeding was peripheral, so I didn't see it, but in my right eye it was smack in the center of my
field of vision; second, he speculated that he believed it to be a result of the push-ups. At times, during physical exertion, if one breathes improperly or holds one's breath, the blood pressure in the head and neck can elevate quite high quite suddenly
causing such bleeding. He
felt the blood would dissipate on its own in a matter of weeks, but told me to come in immediately if there was any sudden change for the worse. Also, he had me come in two weeks later so the retina specialist could take photos and give his own assessmen
. At this follow-up visit, the
retina specialist agreed with the probable cause as diagnosed by the previous doctor, but he suggested I see my physician to rule out the possiblity of high blood pressure or diabetes. I
privately discounted this course of action, as my
mother, an ER nurse, had taken my blood pressure and checked my blood sugar just weeks before when
I had been home for Christmas (my father is a diabetic, thus blood sugar testing apparatus is
in the house). I had had normal blood sugar and
blood pressure.
A week or so later I awoke one morning with a
terrible flu. I spent several days in bed, sleeping much, eating little, feeling terrible. Finally, about the fifth day, I awoke and couldn't read the thermometer due to renewed and more serious bleeding in both my eyes. Heeding the eye-doctors' advice
I struggled out of bed and into my clothes; I staggered out into a cold, rainy February New York day and cabbed downtown to the eyedoctor. Upon examining me, the retina
specialist declared there had to be an underlying medical problem, and he urged me to call my physician immediately. He even offered to call for me, so as to make clear to my doctor how urgent it was that I be seen THAT DAY. After a
moment's hesitation, I agreed. I overheard the eye doctor murmuring under his breath something about a possible "hemolytic" problem. After having additional photographs taken of my eyes, I
cabbed uptown to my physician's office. He did a blood test and had me take a chest x-ray, among
other standard diagnostic tests. After a time, he
came in and told me I had pneumonia and that I was
"incredibly anemic," as he put it. He told me I had to go to the hospital right away to be admitted, and that I required an immediate blood
transfusion. This all rather surprised me, but I
didn't feel any particular panic. I just felt so
tired and crummy that I felt glad in a way that at
least I would receive medical attention. When my
physician made another comment about "abnormal
blood counts," I began to suspect leukemia.
Later that evening in the emergency room, a hematologist who had been called in examined me,
as I simultaneously was given blood platelet transfusion. I spent some hours in the ER, until
a bed could be found for me upstairs, which finally happened about 4 a.m., (I was admitted to
the ER at 6:00 p.m.). I was awakened at 7 a.m. by
the hematologist, who had returned with his diagnosis: Hairy Cell Leukemia. As he gave me the verdict, another doctor and an intern were preparing to perform a bone marrow aspiration on my rear pelvic bone. As I had already been given
the diagnosis, I must assume this was merely for purposes of confirming my condition, rather than to ascertain it.
Anyway, after a week in hospital, during which time I received numerous blood transfusions,
I was released. I had been given a prescription for several antibiotics and for a chemotherapy drug, Cladribine (2 cda). Unlike all the other posts here where people received either in-patient
24-hr IV infusions, or wore a portable pump for
several days, I was to give myself a sub-cutaneous
injection once a day for seven days. I did the first one in the hematologist's presence, to endure I could do it properly, and then I did the other six at home. Believe me, I'd much rather do it this way than have to receive continuous 24-hr
infusion! In any case, to cut the rest of my story very short, as in its particulars it's very
similar to the other stories here, my white count
dropped precipitously subsequent to the chemotherapy. Due to this, of course, I developed high fever and was readmitted to the hospital. After two and half weeks I was released again, only to have to be readmitted yet again several days later. This thi
d time in hospital lasted only a few days. My counts, though still below normal, came up enough to warrant my release, my
fever dropped, and I felt pretty good. I returned
to work a week later, having missed a total of eight weeks. Now, nearly a year and a half later,
I seem to be fine: my blood counts finally returned to normal levels -- except for my platelets -- and there, so far, they remain. On my last visit, the hematologist told me that due to the disease or the chemotherapy or both, my
platelets might never return to "normal" levels,
but that, as it long as it doesn't drop below its
present level, I would have nothing to worry about. In other words, my platelet count is below
the norm, but high enough to sustain clotting function without problem. I seem to be disease free, although I know one can never assume one is
"permanently cured." I next see the hematologist
at the end of this month, and, based on how I feel, I expect -- and hope -- that my condition
remains "healthy."
Throughout my illness, I never once felt "why me?" After all, why NOT me? I had never been sick or in hospital in my life, and I was surprised to see firsthand how prevalent illness is in the human condition. One will see people of all ages, class
s, races, and walks of life in the hospital, very many of them much sicker than I was. None of us is automatically exempt from illness, or bad luck, or misfortune. We must be happy for our health when we have it, and for all
other good fortune as we may receive, but we have no right to feel cheated when things go against us. After all, in life nothing is guaranteed. In general, people alive today enjoy longer lives and
greater health and comfort than humans throughout
history. We should place everything that happens
in its proper perspective and realize there is a
continuum of good and bad experiences that may
accrue to all of us. I was an atheist before my
illness, and I remain one now. I did not experience any revelation or sudden change in my
views of existence. So, I can't offer thanks
to a god, but I feel fortunate for the good health that I do have, and the time I have on earth. What more should one hope for? Mary Anne Rouse - 05/05/99 22:22:47 My Email:rrousefam@aol.com
Comments:
Rusty: I had posted the wrong address.
My email address is rrousefam@aol.com. (I had incorrectly spelled out family).
I would love to hear from you.
and anyone else.
Mary Anne Rouse rrousefam@aol.com Marsha - 05/05/99 16:29:50 My Email:lakhh@megsinet.net
Comments:
I was originally diagnosed with HCL in 1989 at the age of 36. I had a splenectomy, then interferon, then in November of 1992 I had 2-cda. Things went fine until last March. I had a low blood count and also trouble with my Hmo. The oncologist I had to go
o said I had aplastic anemia. I didn't rest till I was seen by the specialist at the University of Chicago. They said I had a reoccurrance of HCL. I just finished my second series of 2-cda on April 9. I had it on an outpatient basis for five days. I h
d very little side effects. No fever. I still don't have a normal white count. The others are okay. I still have episodes of fatigue. I still have an unsettled stomach, don't eat much, and am waiting to get my old energy level back. I sure find this web
ite encouraging. And I am fully aware that there are more dreadful diseses out there. I'm not the only one struggling with my health. I'm truly blessed with a loving family and group of friends. God bless everyone that reads this. La'Kiesta Davis - 05/04/99 17:14:02
Comments:
Dear HCL gang,
I am not diagnosed with leukemia, but I've rececntly read your letters.Your letters really interest me. I would be very obliged if I could have a personal conversation on the web soon. I am doing a report on the disease of leukemia, and would like to have
personal interviews.Good day!! Rita Stango - 04/30/99 23:57:45 My Email:HAIRS2You@webtv.net
Comments:
I was diagnosed with HCLin Sept1984 i was36 years old at that time there were no FDA approved drugs for HCL. I was admitted to SLOAN KETTERING MEMORIAL HOSPITAL in NY I had a spleenectomy and they advised me to take interferon which was an experimental d
ug. I would have to inject myself with it and it was a 2 year treatment.I was not ready to do his i knew nothing about HCL or INTERFERON.Needless to say i was back in the hospital2 more times once with a gum infection and with pneumonia where i was very c
ose to death. My doctor advised me that i should be taking the interferon. I met some young man thru one of my clients thru work(HAIRDRESSER)who had HCL and was taking INTERFERON,because of his encouragement i decided to take it after i finishd the 2 year
treatment within 6 months after i went out of remission. My doctor told me there was another experimental drug available PENTOSTIN, this was a chemotherapy but not very toxic this was 1 and a half year treatment administered as an outpatient. I contacted
men thru my doctor who were taking pentostatin and thru there encouragement decided to take it. It is 8 years later and i am still in remission.I had a rough 7 years fighting for my lif but I did it and now I go for a yearly exam and i feel very confiden
that I will be fine.IF ANYONE WANTS TO E MAIL ME TO ASK ME ANY QUESTIONS OR NEEDS SOME ENCOURAGEMET PLEASE DO NOT HESITATE
SINCERELY RITA STANGO Rusty - 04/28/99 14:19:42 My Email:rustypedersen@uswest.net
Comments:
To: Mary Anne Rouse
I've tried to send you an email but I keep getting it back-please resend me another email with a "correct" email?! Thanks! Rusty Rusty - 04/28/99 14:19:23 My Email:rustypedersen@uswest.net
Comments:
To: Mary Anne Rouse
I've tried to send you an email but I keep getting it back-please resend me another email with a "correct" email?! Thanks! Rusty Rusty Pedersen - 04/28/99 13:38:07 My Email:rustypedersen@uswest.net
Comments:
Madelaine,
I tried to send you an email but it came back,here is what was on your letter
Is that correct? Let me know! And THANKS to EVERYONE for your comments/stories shared here. My attitude is even better about this hcl!!!
Take care,
Rusty wewe23 - 04/27/99 20:18:25
Comments:
leukemia sucks Mark Taubensee - 04/27/99 01:03:58 My Email:dovelake@kiva.net
Comments:
Jean Bradley, your email address is not working for me. Could you please write and supply me with the proper one....MT Charles LeCrone - 04/26/99 22:26:18 My Email:clecrone@bmmhnet.com
Comments:
I was diagnosed as having HCL in 1990. I've undergone two treatments for the disease. The first was interfeon, which I administered myself, much like a diabetic takes insulin. That did not work. I next was given 2-cda in the fall of 1993. Since then I
have been in remission. I see my oncologist about every six months for blood work-ups. My counts are always on the low end, particulary white blood cells and platelets. My oncologist has said that we really never should talk about "curing" this disease,
only speak about remission. He says that subsequent bone marrow tests (I have had two or three since the 2-cda treatment) always show a few hairy cells, but that that is nothing to worry about. I am pretty active (61 yrs old) and power walk from 30 to 4
miles per week in addition to bicycle riding.My appitie is good, and I generally feel pretty good. I guess I would like to know if I am experiencing the kinds of results and kind of life that other HCL patients are experiencing. It is good to know that
there is a place like this site where one can share views with others. I would like to hear from other patients about their long term results from treatment and what they understand the prognosis is for HCL patients. Mary Anne Rouse - 04/26/99 20:11:02 My Email:Rrousefamily@aol.com
Comments:
Hello: I am a 51 year old nurse who went all through the "typical HCL" experience in February on this year. I had been getting more and more tired on the job, and all my blood counts were dropping. I kept ignoring my Dr. when he said we'd better send me
to a hematologist. I finally went, and bone marrow revealed HCL. 7 days in the hospital for continuous 2cda treatment ensued, followed by an additional 5 days for fevers and infections. I noticed another patient in the letters mentioned a severe rash--
too, had an unbelieveable head-to toe rash, probably from the Nupogen, which the Dr. stopped after only four doses. The rash and the itching lasted about 2 months, and I, too, had to see a dermotologist. Glad to hear I was not alone in this. I have be
n declared in remission, but am still out of work after 2 months, due to ongoing fatigue. I am able to exercise daily, and feel I need to in order to rebuild my strength, but I can't do too much else on the days I exercise. I still crash in mid-afternoo
, and go to bed about 9:pm. I still have traces and blotches from the rash. This mysterious rash was as bad if not worse, than the whole HCL treatment and experience. In the hospital, when my WCB was knocked down by the chemo, the dr. put me on two kin
s of antibiotics to ward off infections. One of these may have been the culprit for the rash, too, but more likely the nupogen. My main reason for writing is to gain whatever information I can get for the incidence of future cancers. This is a concern
o all of us, and I wonder if anyone can provide some insite into this question. While my doc is a wonderful hemo/oncologist, he's very vague about the incidence of future cancers--I really suspect he doesn't know himself. I'll watch for replys on the pa
e, or, I'd be delighted if anyone would like to personally communicate with me. This page on the internet is a wonderful service for all of us. God bless all of you. Mary Anne Rouse, rochester, NY email: Rrousefamily@aol.com Aimee - 04/25/99 22:52:51 My Email:agarten@usc.edu
Comments:
Growing up, my father (in his early thirties) was diagnosed with HCL. I was too young to understand, and he was too ill to explain. I know all of your pain-- I felt my Daddy's anguish for almost two decades. I nursed him through the 2CDA treatment as I fi
ished high school and he now seems to be finished fighting with the disease. I admire the strength of all of you survivors out there... don't forget to gie your kids a hug and keep fighting at least for their sake. Mary Gunter - 04/22/99 19:40:55 My Email:msgunt01@gwise.louisville.edu
Comments:
Hello - it is really wonderful to find this website and read your stories. I am a 43 year old white female diagnosed with HCL 10 years ago. I was a single mom with three young children feeling pretty well I thought. My lifestyle was very busy and time f
r me was very limited. My first symptom was a very large spleen, bruising followed on the back of my legs, but I still did not seem to feel that bad. I was admitted to the hospital and was told I could possibly have HCL very it was very unlikely since u
ually men in their 50's were the norm. My doctor was going to release me from the hospital with a diagnosis of asymptomatic mononucleosis, but a specialist in HCL Dr. Yam looked at my bone marrow and confirmed HCL much to everyone's surprise. I was trea
ed with splenectomy right away which put me in remission for approximately 5 years. Then I gradually became ill again and was treated with 2cda. This seemed to do the trick for about one year, but again the HCL returned and again 2cda was administered.
Again, one year later it was back again and we used the pump with pic line. Looking back my oncologist seems to think if I had originally had two treatments of 2cda I would have been in remission for a much longer time.
This was a real problem for me as my pic line infiltrated and I had a massive infection which then we had to stop the chemotherapy and used the antibiotics to stop the infection. This did the trick and my chemo was then repeated in full course six weeks
later. That was March of 1998. I then went to the University of Chicago in April of 1998 to visit a specialist in HCL Dr. Harvey Golumb, referred by my oncologist. Dr. Golumb said the hairy cells sometimes tend to be in your blood, just to watch them e
ery three months and have peripheral smears done. If no cells are seen in the smear, do not do a bone marrow biopsy. So far no hairy cells have been seen. I work in a pathology department at University of Louisville where my doctors also do flow cytome
ry testing on my smears. This is very sensitive and picks up even the smallest of cells. My flow cytometry showed no hairy cells at all.
Thank God! Dr. Golumb said to only do a bone marrow biopsy if hairy cells are picked up in the smear. My story goes on and on - but for the last ten years I have never known anyone with HCL or been able to talk with anyone that could really understand.
Thanks again for all your stories.
Mary Gunter, Louisville, KY Rusty Pedersen - 04/21/99 15:58:40 My Email:rustypedersen@uswest.net
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 to
d 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 wa
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 (so
e 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
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 co
tact 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! P
us 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 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, Volume 4 (the most recent)
