I get letters. I've decided to include some of them here so you can learn from them and get an idea of what others are going through with this disease.
*******************************************************
Hi Mark
I have just finished reading your diary and found it very interesting.
I was diagnosed with HCL 17 years ago. This was the first known case of HCL in New Zealand. Following a Spleenectomy, two courses of Interferon A and finally a week long infusion of 2cda, I am now in remission and have been for over 2 years. I am now coming up to my 47th birthday and living a very normal and active life.
I am a Design Engineer for a electronic security company in Wellington NZ and have been training in Karate for nearly four years.(Black Belt before I'm 50 is my goal)
It's great to read about others with HCL and follow their progress. I wish I had kept a diary of events at the time but there was so much happening in my life then that it did not occur to me.
My wife was about 6 weeks pregnant when I was diagnosed and that was a difficult time. We only have one child (son) but life is great and the chances of me being around to have grandchildren are better than ever.
Catch you again sometime. Hope you get to do your 10k race sometime. I'll let you know when I gain my Black Belt.
Best wishes for your future
Neville Saunders
Hello Mark Taubensee,
My husband and I live in the Napa Valley in Ca. We were born and raised in
the Monroe County area, graduating together from Smithville High School in 1950.
Yesterday we received an email from my husband's niece who has just been
diagnoised with HCL. She is in her late twenties, lives northeast of
Atlanta, Ga. with her husband and two little girls. Her baby is 4 months
old. About two years ago, she lost her eighteen month old son in an
accidental death. She very much is still grieving over him. Now this!! Her
family lives in southern Fl.
Upon receiving her email, I went to the internet and looked up Hairy Cell
Leukemia, as we knew nothing about this disease. Your material immediately
came to the screen. We were eager to read your Diary and to our surprise all
the other interesting articles and to learn that you live close to our
roots. (In fact, I am still reading your articles.) We kept running back to
the computer thru out the day to read more.
I am so glad that you kept the Diary and put it on the internet during your
treatments. I am sure so many people are going to benefit and hopefully have
your attitude to help them thru their treatments and tests.
I have sent information to our niece and other family members, how to get to
your material. I am sure she will need lots of support, encouragement and
prayer. Her email address is:
Bryalle@aol.com
Not only did we learn a lot from your HCL Diary but found your canoeing trip
down the San Juan River in northeastern Utah and parts of New Mexico very
interesting. We felt we were right along on this excursion, but cool, dry
and rested. Ha. Not sure I could handle swimming in red water tho!
WE visited Zion National Park in Southwestern Utah this spring and got a
glimpse of what you enjoyed on your canoeing trip. I would recommend that if
any reader has not visited this area, by all means do so. It is some of the
most beautiful country you will see. The colors of the hills and mountains
leave you in awe at their beauty.
Thank you for your important information on HCL and your witty stories. My
retired husband is now writing stories of his childhood and his style of
writing is much like yours. He is envious of you on that huge acreage back
in those rolling 'Hoosier Hills' as his heart is still back there. Military
took us away many years ago. Now children and grandchildren keep us in this
lovely valley. Since we have relatives and friends in your area, we visit at
least once a year.
Please keep your writings and info posted on the internet. Good Health to
you and all who might read this. Email-What a great way to communicate!
Hairy Cell Leukemia - Variant (HCL-V)
This is my case history for those who have shown interest in HCL-V. HCL is very rare (600 cases a year in US), while HCL-V is rarer again.
I will be 63 in September 1999. I am married and live in Canberra, the National capital of Australia. I was a professional engineer and retired at the end of 1991 after 40 years in the Civil Aviation Authority (CAA). I spent most of that time designing aeronautical radio communications (VHF and UHF) and point-point systems including satellite (14Ghz). I have a ham radio license (VK1DK) but have not been active for many years. Did working with RF or the solvents I used as a young technician or the two-pot paints or antifouling I used on my boat, cause the leukaemia? No one seems to know.
How is HCL-V differentiated from HCL?
Both HCL-V and HCL show hairy cell structure in blood samples under the microscope but there are characteristic differences.
Monoclonal antibody markers (lymphocyte markers) are only slightly different as shown below:
Marker HCL-V HCL
sig +5 +5
HLA-RD + +
CD5 - -
CD10 - -
CD19/20 + +
CD22 + +
CD23 - -
CD24 + - or +
FMC-7 + +
CD11c + +
CD25 - +
B-ly-7 - or + +
CD38 - - or +
As can be seen above, two patients could have identical blood results except for CD25 -. The CD25 is mentioned in the literature as being the differentiator between HCL (CD25+) and HCL-V (CD25-).
HCL Treatments
The medical literature available on the net on HCL is quite numerous and provides evidence-based knowledge on the latest treatments. For example a trial undertaken at the Royal Marsden Hospital, London, compared two purine analogues, DCF and 2-Cda, on HCL patients. In one group 159 patients with HCL (8 with HCL-V) were given DCF. While the results were good for HCL suffers, only 4 of the 8 HCL-V suffers responded to DCF and none attained CR. Another group of 26 patients (two with HCL-V) were treated with 2-Cda. Again, the HCL patients reacted well, while of the 2 HCL-V patients, one did not respond at all and both died of active disease.
The rest of the medical literature available on the net on HCL-V is equally depressing and supports the above study conclusions that DCF and 2-Cda are ineffective in the treatment of HCL-V.
There was one patient in Italy who obtained CR when his spleen was radiated. I raised this with my Oncologist who strongly recommended against radiation because it causes very large lesions, which make it almost impossible to remove the spleen afterwards, if that becomes necessary. Further if radiation of the spleen worked then a splenectomy (complete removal of the spleen) may work.
The conclusion from the medical literature search on the net is that there are no modern treatments for HCL-V.
My History
The diagnose of HCL-V was, like most leukaemia, more by accident than good medical management. About a year before being diagnosed I had notices slow weight loss (pants a bit lose around the waist). There were two medical events associated with the weight lose. Firstly, having been treated for 30 years for hypertension with a-blockers and ACE drugs, the blood pressure fell markedly so I could stop all blood pressure medication (proves conclusively that weight has a lot to do with hypertension). Secondly, I started to pass uric acid gravel in the urine. A blood test and IVP test (injecting dye and X-raying the kidneys and bladder) did not show stones or uric acid in the blood. The same test repeated a year later for another reason, after being diagnosed with HCL-V, reported an enlarged spleen. The original X-ray also showed an enlarged spleen but it was not reported.
By Christmas 1997, I became more interested in my weight and started to record it. I was 86 Kg at that stage. My wife and I went on an intensive 3 month holiday by organised bus tours through Europe, UK, Ireland and Israel in April 1998. If you have ever been on these types of bus tours, you know how strenuous they are - in and out of the bus, walking miles and changing hotels every day. There was no indication of any problem. We returned to Australia at the end of July. I had lost another 3 Kg but it was not unexpected.
In September 1998, I got flue like symptoms, a cough that did not go away and excessive night sweating (totally drenched). The doctor was suddenly very interested in the continued weight loss and night sweating. He went ballistic when he did a physical examination - for the first time, I might add - and found the spleen grossly enlarged. An ultra-sound confined the grossly enlarged spleen and associated lymph nodes, which suggested leukaemia.
The oncologist had blood tests and bone marrow biopsy done immediately at the local hospital and HCL-V was diagnosed. He was of the opinion that I had the disease for at least two years.
The blood test showed very low Hb (90 g/L compared with normal range of 135 - 180 g/L) (Do you feel tired? No), low platelet count 50 x 109 /L compered to 150 -400 (Do you bruise easily or your gums bleed? No.) and very high WBC (Lymph) of 27.6 x 109 /L compared to 0.8 - 4.0. In addition, I was found to have an under active thyroid.
The oncologist was of the opinion that the disease was largely centred on the spleen and the bone marrow was relative free of hairy cells. He recommended traditional leukaemia oral chemo to see if the spleen could be reduced.
I had three courses of chemo:
* First Course of Chlorambucil/Prednisolone (27/8/98 - 11/9/98)
* Second Course of Chlorambucil/Prednisolone (5/10/98 - 20/10/98)
* Third Course of Chlorambucil/Prednisolone (15/11/98 - 30/11/98)
The spleen progressively reduced after every treatment but I had bouts of secondary infections, which required hospitalisation and muscle wastage from arms and legs from the prednisolone. I also developed prednisolone-induced diabetes, which is being looked at right now (May 1999).
In December 1998, the oncologist gave me three options:
1. Do nothing - wait and see.
2. More chemo.
3. Splenectomy.
I decided to do a splenectomy, which was under taken in Feb 1999. My really had no choices. The chemo side effects were too bad and by Feb, I was getting little things, which indicated problems, like skin rashes and lumps. The spleen weighed 1.4 Kg about 3 to 5 times the weight of a healthy spleen.
Since having the spleen removed, I have regained my original weight (now 90 Kg), got some hypertension back and some mild pain in the joint and muscles. The muscle tone is slowly returning with exercise. I feel great but the blood test 29 April still shows some activity. Everything in the FBC is in the normal range except for the WCC (neut 7.43 x 109/L normal range 1.8-7.0 and lymp 7.92 x 109/L normal range 1.2-4.0).
Don Knox
Monday, 24 May 1999
Hello! I've been wanting to write you for some
time but I have not had
the internet skills nor an internet outlet until
today. I am a
highschool counselor at a special education high
school in the south
suburbs of Chicago. I read your diary over the
winter while at a
college where my girlfriend attends. I was
diagnosed with HCL on
Halloween 1997 (How appropriate!!) I apparently had
a much more
difficult experience than yourself, due to I
believe the fact that I
was much farther along in the progression of the
illness before I was
diagnosed. Two years prior I went in for a blood
test but never went
back, even tho I recieved a letter in the mail from
the doctor that I
was anemic. After experiencing heart palpatations,
bleeding gums,
shortness of breath, cold sweats, high fevers, and
my skin turned
yellow, my hard head finally realized I was sick.
Within an hour of
going to my family practitioner I was introduced to
my new oncologist,
hospitalized, and given the last rights!! I was
unable to begin the
2cda treatments for a month because I was so sick.
Once the chemo
treatments began things really got tough as I had a
bad reaction to the
2cda. All my skin burned off!! I found myself
transferred to the
University of Chicago hospital on the cancer ward
being treated as a
burn victim. Later, while visiting with my nurses
after recovering I
found out that my nickname was "mummyman" (ha ha)
and given roughly a
5% chance of survival. I have lunchroom duty now
but will write you
again. If you have the time, perhaps you could
email me. It would be
the very first for me as I am new to this computer
fad.
Tom
Hello there,
I just wanted to let you know how helpful I found your story to be. My father-in-law was diagnosed with HCL this morning and immediately I searched on the web for information. Thank you so much for taking the time to write down your thoughts and feelings throughout this time in your life. Through your story, you have given me hope that everything will be alright. Possibly even better than that, because this is just a reminder of how special life really is!!
Sincerely,
Danielle Rogers
Thank you all for responding to my message about HCL. I found it very
helpful to hear from you and to read your encouraging messages.
Here's a brief summary of my story. I found reading your stories
helpful and encouraging.
I am 47 years old and I have two teenage boys (14 & 16) and two
step-children (22 & 25). I'm a teacher at a community college and live
a very busy life too. My
husband is a self-employed businessman. We live in the Okanagan Valley
near Vernon, British Columbia, which is about 90 miles from the US
boarder above Washington state. We have several large lakes in our
valley as well as wonderful ski hills and beautiful scenery.
Last November I went for an annual check up and
when my blood counts came back low in all areas my GP immediately sent
me to a haemotologist who specializes in leukemias and lymphomas. This
happened over the Christmas holidays so I didn't receive a firm
diagnosis until about the middle of January. I had 2 "dry pulls" but
on the 3rd try (which was the worst) he was able to get enough marrow to
reach a diagnosis. The specialist told me later that he was very
surprised to see "hairy cells" in a woman my age, but the Cancer Center
in Vancouver confirmed his diagnosis. Subsequently I took a leave of
absence from my job and by the 2nd week of February had started the 2CDA
treatments.
My treatment protocol was somewhat different from others I've read
about. I visited our local hospital (which has a great cancer clinic)
as an outpatient and had an intravenous drip for about 3 hours a day for
5 days. I did not require hospitalization although I did have fevers,
chills, headaches, etc. The hardest thing for me was the tiredness.
I'm usually such a busy energetic person, I've been frustrated at not
being able to do my usual routine. It was difficult too leaving my
class to subs.
I found a lot of useful info on the Internet just by searching for
"Hairy Cell Leukemia" on a couple of search engines. The emotion of
this has been the
hardest for me to handle. The word "leukemia" conjures up terrifying
thoughts in me (and others). Of course, my first thoughts were for my
family, particularly my young sons. I have always been very healthy and
have always been careful of diet, exercise, etc. I have never smoked, I
don't drink alcohol and all my life have been active skiing, walking,
swimming, biking, and playing various sports. So it's disappointing to
know that I have this disease inspite of the care I have taken of my
body. It's like my body has betrayed me. As time passes, I'm not so
frantic about it though.
Right now I feel nearly normal; I'm still off work but will go back
part-time in a couple of weeks. I've wanted to cut down on my work
commitments for some time now and this diagnosis certainly has made me
think about what I do with my time. I'm trying to put my life into
better priority and stop wasting time doing things just because I
"should".
I'm due for a check-up next week to see how my blood is responding. I
hope the results will be positive as I know I'll be terrible
disappointed it they are not.
Thanks again for writing. In our health region there is only 1 other
person with HCL
and he's 90 years old! Please write again if you wish. If you have
any other sources of info I'd be pleased to hear about them too.
Regards
Madelaine Befus
Dear Mark,
I've been a "lurker" at your HCL site since I was diagnosed last
October. At last I've come to feel that I have something to add, and
I've just posted my first comment. But I wanted to contact you directly
to let you know how enormously helpful and supportive your diary and
your web site have been to me. Your site an example of the internet at
its very best: providing a medium for mutual support among people who
would otherwise feel isolated and confused. At least that's the way I
would have felt without it. Thank you from the bottom (and top) of my
heart! I hope all is well with you and your family.
Sincerely,
Joe Most
I am delighted to find a support group that I can relate to. The
groups previously offered me were "cancer" and "chronic illness" some similiarities but not a comfortable match. There have been
times over the past couple of years that I felt like the lone ranger.
When I was first diagnosed with hcl I was distraught and not wanting to communicate preferring to remain in denial but today I am in a very positive mental state and happy to share my strength,
hope and experiences with others
I have been in remission from HCL since September, 1994. I also
had a basil cell removed from my right shoulder in January, 1994. In
June I developed pneumonia and after a blood test and bone marrow it was
determined I had HCL. I received treatment in the hospital. 2-Cda was
given to me intravenously for seven days straight. My reaction to the
medication was just like yours. My white count remained at 200 or
thereabout. I also received blood transfusions. I was given neupogen
shots daily for about 30 days following the chemo, (with no improvement
in the white count). On about the 31st day my oncologist decided to stop
the injections and within 72 hours my white count started to rise and
continued to do so. About two weeks later my blood count was considered
normal, no more masks, etc. I did, however, develop a skin rash that
lasted for four months. A dermatologist finally cured it. No one could
determine the cause. My oncologist said he didn't think it was from the
chemo. About three months later I developed an acne type condition on
my forehead and face. It comes and goes and none of the doctors can
figure out where it came from. Have you heard of anyone with similar
problems after the 2-Cda?
Hope your condition has gotten steadily better and your strength
has returned to normal. I would be happy to participate in any survey.
Best wishes, Lefty
Hi
My name is Rusty Pedersen and I had HCL twice!! I'm in
remission again! I'm 50 yrs old, female and was first
diagnosed with HCL in Sept , 1992. I went 6 yrs b/4 it
came
back in Nov , 1998. Both times I had the 2CDA treatment
for 1 week. The first time I
did that at the Mayo and this last time I stayed in Duluth,
MN (my home town). PLEASE
contact me! I have ?s on lengths of remission, if anyone
needs support or wants to talk
to me I am available at 218-628-0580(Bus) or 218-525-6562
(Home). My email address is rustypedersen@uswest.com
What other treatments are available? I've had about 15
bone marrow biopsies since my initial bout and my next one
is scheduled in July (I'm back to them every 6 months
instead
of once a year). I'm eagerly awaiating a reply. I'm so glad
I checked this out (at work we just got a good computer and
on the internet!)
Best of health to you!!
Rusty Pedersen
Have just read your diary about your bout wth HCL - I was diagnosed in Mar 92 and was told about the only thing to do was a splenectomy. well i had done some prelim reading at the library science computer and at that time the newest therapy was Interferon A. My doctor didnt know that !!!! I asked him to do some calling and the cancer foundation put him on to the injection program. We started on injections which i did myself and that lasted daily for 6mos. - at the end of six months
he saw no improvement in blood counts so he was ready to do the splenectomy again. once again i had been doing my homework and read about the newest chemo which was being tested. another call to the cancer society and they said i would be elegible to be on the test but would have to wait a month till the interferon cleared. at the end of that month - another set of blood tests and lo and behold my blood counts were normal and have been normal since- I have just moved to florida and in the small town i live there are only a few oncologists - - when making an appointment with him i asked the nurse if Doctor has treated for HCL - she said yes "ONE" !!! Looks like i have to train another doctor.
Really learned a lot from your diary account - there is alot more out there about HCL than just 7 yrs ago THanks BOB
Hi!
I wrote you almost a year ago. My husband, Sonny, was diagnosed with HCL
and was taking 2CDA. In the past year, we have had many ups and downs. I
have tried to read the Reader's Comments every so often to see how everyone
is doing and to see if anyone is having the same problems as Sonny. He has
periods were he feels good and starts exercising and then it is as though he
gets hit by a train. He can barely get up due to the fatigue. During the
fatigue times, many days he can only work a half day. The doctors have no
explanation. They even did a bone marrow and he is in remission. He has
been to a liver specialist since his liver counts have always been a little
high, and everything checked out OK. He has also been to an infectionist
disease Dr. and he ruled out all of the obvious things. They all say
everything is OK. When we inquire about chemo side effects, no one has any
answers except that the chemo should be out of his body by now. Also, all
of these other doctors have never even heard of HCL, so we have to educate
them. It is all very frustrating.
He has a lot of symptoms that are driving him crazy. We have recently
changed Primary Care Physicians and he has an appointment tomorrow. We are
hoping that she might have an answer, but Sonny fears that it will mean more
tests and he is sick of that. I went back and looked at all of his records
(We keep a copy of everything) and he has been tested for AIDS and every
kind of hepatitis, 8 times in the past year. I told the last Dr. that he
had to be the safest man in town and to please move on to other tests!!!
Does anyone else have the following problems and do you think it could be
from the chemo? As I mentioned, he has these bouts of fatigue. Also,
during the fatigue periods, he usually has a lot of aching all over his
body, but his legs are the worst. He has a lot of stomach trouble (cramping
and rolling) and he also has ringing in his ears. This is particularly
bothersome at night. Then, it will all disappear for several months and
slowly come back. I know you are not a Dr., but we are wondering if these
are side effects from the chemo or part of the HCL for some people? We are
hoping that eventually either this will all disappear or if it is something
else, it will finally manifest itself. Any info would be helpful.
Thanks,
Karen Goode
Kgoode@stanfordeagle.com
From Pat in Columbus:Have found your journal fascinating. Bill, my husband, and I have known about
his HCL for about ten years. He has not had treatment, but because he had
bypass surgery fifteen and ahalf years ago, we are think it is about time to
consider 2Cda..
The literature reports the longest bypass recorded to be twenty years, with
most needing attention between five and ten years. His oncologist has been
very attentive with the regular blood tests, and encouragement. The
philosophy has been
If it's not broke, don't fix it" but since he has started to have angina
occasionally, and recently experienced a TIA we are concerned that he may need
chemo so that
he can take care of the other medical conditions. Like you, Bill has always
been extremely active. He swims two to four miles a week, and until the TIA
played competitive tennis every week. He had just started a weight lifting
program when
the TIA ocurred . He has been advised to give up the wight lifting, and the
tennis for now. He is almost 72, and looks more like 62.
His low platelet count was discovered after he was found to have a clotting
problem when he went in for cataract surgery ten years ago. If he had not
been required to have the blood work done for this surgery we may still not
know about the HCL. Well, I guess we would since he has blood tests for other
things. His energy level has always been extremely high, and he is just
beginning to slow down some a little. Maybe overactivity has something to do
with you HCL guys. I certainly read a lot of that in your story.
For the last year his platelet count has fluctuated between 60 and 80
(hundred, thousand?) and his WBC has stayed at about 2.4. Don't recall the
hemoglobin count, but I think you get the picture. We have an appointment
with the oncologist on March l to discuss the advisability of treatment,
because of the other problems. Hope I"m making myself clear: He can't have
bypass repair or a stint put in because his blood is too thin due to the
leukemia. Since the mini-stroke he has been allowed to take a baby asprin, but
that is his only treatment. After treatment for the HCL. IF it all worked
out, he more than likely would be able to take a blood thinner for both the
heart condition and arteriosclurosis in the brain arteries. Anyway, that's
our story.
There were so many things you discussed in your journal that we have not
looked into, such as the port being a bigger deal than than we thought. Bill
couldn't have one put on his upper chest near the shoulder since he has a
pacemaker there, unless it could be put on his right shoulder. As you can see
form these complications he's my miracle man. It it were not for the
fantastic medicine in the USA he wouldn't be with us. And believe it or not,
he is very a very vital, active and healthy person, in spite of his history.
There is no doubt in my mind that his physical activity through the years has
contributed to his " good " health. Four years ago we decided to see the
world underwater. We took SCUBA diving lessons, and have been to the Great
Barrier Reef, The REd Sea, Figi, and many places in the Carribean. All the docs said it was okay to SCUBA, then after
we bought the equipment the oncologist changed his mind. So, we hung up our
fins, but got fifty dives in before anyone thought to warn us about the water
pressure causing internal bleeding. Well, it was a beautiful and wonderful
experience, and nothing happened. I"ve chewed your ear long enough. Thanks
for the chance to discuss it. We wish you all the luck in the world, and
prayers for good health too. Pat in Columbus
Thanks so much for the excellent website. When I
first learned I had HCL in late July, I was *terrified* despite the
doctor's reassurances. Then I read your diary. Believe me, I can't
tell you what a difference it made to read about you, and all of the
other REAL people, who were STILL ALIVE after dealing with HCL. Your
site truly helped me turn the corner. Now I'm "back to normal", and
I'll be glad to do what I can to help make that same difference for
others. Thank God for the internet, and your site!!
Regards, John
Thanks so much for your web site. I found it this morning after a good friend
of mine in Kansas called last night with a HCL diagnosis. He is a nationally
competitive fencer (in the 50 age bracket) and is having a hard time believing
that his body is betraying him. He is, as you can understand, in the dark as
to what this is all about and is in panic. I found wonderful information on
the web and will be sending it on to him today, but certainly your journal
will be the most personally meaningful. Thanks so much from all of us out
here for sharing your story. It may have been therapy for you, but you will
never know how it has helped others....
Hi! My name is Brian Coughlin, and I was diagnosed with HCL on June 19,
1998 (the day before my wedding!). I was put on 7-day continuous 2'-CdA
(with the take-home pump and PICC line), and I'm now in complete
remission... as of October 14, anyway.
As for you questions, I can only give you my raw opinions, based on my
personal experience. Patients seem to vary a bit in regards to response,
tolerance of the PICC line, preference of IV vs. going to the doctor's
office every day, etc.
1) "Is home care preferable?"
I thought so. I was fitted with a PICC (Peripherally Inserted Central
Catheter) line--a catheter with a long, flexible tube that runs into a main
vein, up your arm, and slightly past your shoulder. From what I've heard,
it is FAR more preferable than a "port" (see Mark's diary for a description
of that!). From there, I was given a 7-day pump, which administered a
near-continuous feed of 2'-CdA solution for the 7 days. (The pump seemed
to engage every 4 minutes or so with a soft "whirring" noise... very
similar to a 35-mm camera automatically rewinding or advancing its film for
about a second. I'm a heavy sleeper, so the noise didn't keep me awake,
though it interrupted my wife's sleep a bit. Suggestion: play some soft
music, run a fan, buy a table fountain, or find some other source of "white
noise" for your bedroom; it makes things so much nicer!) I was able to
stay at home (as opposed to the hospital) and walk around at leisure (when
I felt up to it). I could keep my own schedule, indulge my own tastes for
meals, and sleep in my own bed without people poking and prodding me
through the wee hours of the night/morning. If your insurance allows, you
can request home health care (which I did); a nurse can come over and
change the dressing on your PICC site, check your vitals, etc. (Blood
counts still need to be done at the clinic, though.)
2) Is administration relatively easy?
Yes. Once the PICC line is in, you can let it do its thing for 7 days.
3) Is there typically nausea/hair loss/other effects?
I experienced no hair loss whatsoever, and my oncologist says that hair
loss during 2'-CdA administration is *extremely* rare (less than 2%, I
think). In fact, I felt fine for the first four days of administration; my
energy, appetite, and overall feeling was good. It was in the last three
days (and the two days following the removal of the 2'-CdA pump) that I
lost my appetite, lost my energy, and basically felt like I'd gotten a
horrible case of the flu. (All in all, things could have been much worse.)
Suggestion: while you have your appetite, eat voraciously! Gobble up
every source of healthy, high-protein, high-vitamin food that you can lay
your hands on! The 2'-CdA is attacking your body, and your body will need
a vast supply of protein to start rebuilding itself (and the
vitamins/minerals/nutirents to do the job). Cottage cheese was a staple
for me, as was spinach (high in iron!). When/if your appetite slacks off,
try to eat *anything*--I resorted to Gerber (tm) Rice cereal, whole milk,
and sugar; it was very gentle on my stomach. And don't forget: this too
shall pass! The nausea (and yes, it's miserable) ended on the 3rd day
after the end of chemo, for me... and I get the impression that that time
line is typical. Expect only a handful of nausea days after the chemo is
disconnected.
4) How can one's spouse help?
By being very patient and understanding, I guess. My wife Kathy was
wonderful, though she went through a lot. I was not in the best of moods
when I was slogging through the chemo's pseudo-flu (nausea, fever, fatigue,
and a type of malaise that kept me from getting comfortable, no matter how
I positioned myself; very similar to flu), and we had several arguments,
but we stuck together, forgave, and pushed on. A spouse can understand
that you, the patient, are feeling miserable and may be irritable; you, the
patient, can understand your spouse's helplessness in the face of all this,
and cut her some slack whenever possible. :)
A few things that will almost certainly happen during/after chemo are:
1) reduced blood counts. Your white counts will drop like a stone. Don't
be surprised if your white count (normally 3.6-7.0, or 3600-7000
cells/microliter) drops below 1000; mine dropped to 500 (.5) before it
leveled out and started to rise. Again, eat lots of protein, eat plenty of
calories (when you can), and eat a balanced diet! Your body feeds your
immune system LAST... yes, LAST! After every other system is fed, your
immune system gets to nibble on what's left... so supply yourself with
plenty of healthy calories, nutrients, etc.! Your platelets will probably
drop a bit more (though they may be quite low now!), and your red cells may
drop a bit, too... though probably not as much (mine barely flinched).
2) possible hospital stay. I was in the hospital for 6 days after chemo,
because my fever went up to 101 (due to the chemo pseudo-flu), and the
doctors feared an infection. After the chemo, you won't have much of an
immune system left, and any infection at all can be life-threatening (my
oncologist said that, with one's immune system suppressed by 2'-CdA, one
could die of a normal infection in less than 24 hours, so any *possible*
sign of infection is acted upon with all possible haste... time is of the
essence!).
3) possible weight restrictions. I was told not to lift over 8 lbs.
(approximately a full milk jug), since my spleen was 7 times its normal
size and in danger of rupturing) and my PICC-line arm was not to be put
under stress.
I hope this helps! Feel free to write back with any other questions... I'm
sure I overlooked *something* in all this! God bless and speed your
recovery!
-Brian
What a surprise to find your web site about hairy cell leukemia. I am
also a survivor. Mine was discovered in 1991 before 2cda was available.
For two years or so I gave myself shots of interferon. It just kept
the leukemia from getting worse..it did not make it better. And I felt
lousy. In May of 1993 I took the 2cda treatment. My port was called a
Hickman and was at my clavical...worked very well. As of today, I am
still in remission (10-15-98), but my hemotologist always tells me,
"your blood looks good, no hairy cells", but we don't know when it will
come back. He keeps me very humble and I appreciate each day. This has
been enforced by the fact that I also developed breast cancer and had a
double mastectomy in 1996....could not take chemo because it would
activate the leukemia....so I am relying on tamoxifin to do the job. If
the breast cancer recurs, or I get another kind of cancer, I don't know
what treatments are available.
I compliment you on putting your story on the net...I would have loved
to have had someone to relate to, but when I was faced with it there
were only 7 other cases in our whole medical area. I understand 6 of us
are doing well.
Best wishes for your continued remission
As a result of my regular semi-annual physical examination on Oct 13, 1997
my family physician noted a drop in my platelet count from my April
physical. He informed me it could be leukemia. He wanted me to see an
oncologist immediately. My wife Avis amd I had planned a short trip to the
Air Force Museum in Dayton Ohio, and then to her sister and brother in law
in Chattanooga, TN. He agreed hat would be OK, but while I was in his
office he made an appointment with Dr Randal Trowbridge , a member of a
seven Doctor Onxology Group in Indianapolis. IN. for October 27th. He
scheduled me for a Cat Scan and more blood work. He met with me again on
November 10th and confirmed I had HC, but it was not yet in a critical
stage, and choose not to treat it. I had a bone marrow test on November
28th. It was clear. Since he felt it was more or less in remission he
choose to monitor it with monthly blood tests. There was little change in
the monthly tests until Aug 7, 1989. It registered a drop. I met with Dr.
Trowbridge Aug 24th and he said we would makes plans for treatment. After
the usual hassle with Medicare, and my supplemental carrier it was decided
to begin treatment. On Sept 29th I had a Pik installed in my left arm at
the elbow. After an X-Ray to be sure it was routed properly I was hooked to
the pump and sent home about 4 PM. I had a sleepless night, I supposed
caused by anxiety. My pump made no noise. I made daily trips the Hospital
to have my vitals checked and to pickup a refill. I am less than fifteen
minutes from the Hospital, and it is a four lane highway all the way. After
the first night I got along OK. It was tough to get dressed, but my wife
did an excellent job assisting. I had no side effects whatsoever. I
completed my treatment Oct 6th and had the pik removed. Today is the 12th
and I still have had no problems. I had a blood test and met with my
oncology Doctor today. He informed me the treatment was working as my count
was coming down. I will have blood tests on Monday, Wednesday and Friday
next week.
Oct 17th: After my blood test today I was informed I wouldn't have to have
another until Friday, Oct 23rd. My platelet count was higher than it was a
year ago when I was first diagnosed having HC.
Your Journal was a source of strenth to me from the time I was diagnosed
having HC, until I started my treatments. Since I will be 74 the 25th of
October I was afraid my age might be a factor, but so far it hasn't. I have
been very active since me retirement in 1989. I mow about three acres and
have a large garden.
I haven't a clue why HC choose me. I will keep you informed as to my
recovery. I enjoyed your story very much. It answered a few questions
>and added some lite touches. I can relate to your missing
>the summer and here in Alaska our summers are so short and
>precious. I was told around the end of June 1998 that I had
>HCL and that was the end of my summer. I was told to get
>South as soon as I could and I asked if I couldn't get
>SuperSavers. Alaska Airline is the only plane that lands on
>this little island and we couldn't wait for SuperSaver
>tickets so that took care of our savings. I'm back home now
>but with all the bills a person could really get sick! My
>white count as of 8/17/98 was 3.0 so it's looking good. But
>I'm still scarred. I've heard all kinds of things like HCL
>can come back - some with HCL live for 10 years - chemo
>therapy weakens the body and then cancer attacks these
>places and on and on. So when the doctor says I'm doing
>good. I wonder what he really means! Thanks for just being
>there so I could get this of my chest. Cause I have to be
>so brave and up beat for everyone else.
>Thanks again - judyk
>
As you may already know, typical hairy cells are monoclonal B-cells
which express CD103, CD11c and CD25. They are very strongly positive for
CD22. These markers are usually detected by a technology called "flow
cytometry". These tests are substantially more sensitive and specific
than the traditional TRAP stain. I hope this is helpful. dtm
I will be anxiously awaiting a response from your friend in Istanbul. As
for the opinion of the enlarged spleen, I can only speak for my experience. My
spleen had enlarged to 4-5 times its normal size. 5-10 years ago a
spleenectomy would have been pretty common, however now with the invention of
2CDA the spleenectomy is much less common. My spleen has reduced back to its
normal size in less than 3 months and even the doctors seem amazed at this
fast response. HCL prognosis is better than ever at this stage. Remission
lasting 2 years is being considered a good cure indicator. Will lend more
thoughts when I hear from them. Glad to hear from you again
In response to the concerned person in Tennessee we would suggest that healthy fresh whole foods (living enzymes) are essential to provide the full spectrum of nutrients. We are finding much literature available now on Cancer and Nutrition , including vitamin therapy.
My naturoppathic doctor found that I was extremely low on most nutritional minerals from a hair analysis, especially zinc and copper. This would interfer with healthy blood cell production. Right now I am taking mineral supplements, enzymes, vitamin C and their tonic along with a healthy diet and ozone treatment. This doctor recommends I keep beef, pork and dairy products out of my diet.
I shall inform you of my progress , positive or negative as I see the specialist if this will be helpful.
So far the good diet, as I mentioned has definitely improved my overall physical well being and energy level, but not the blood count yet.
You had asked me about the test, flow cytometry, used by my oncologist in
diagnosing my HCL. Unfortunately, I do not know much about it and searching
on the internet does not help to explain how it is used in diagnosing our
disease. I will, however, ask my doc for a layman's description of what it
does. I'll see him the end of the month and let you know if I fine anything.
You had also noted that I am a runner and am trying to keep in good shape. My
recent race across Choctawchee Bay here in the Florida panhandle was cancelled
due to Georges (the hurricane). This was fortunate since I'm not in very good
shape now--too much work and not enough exercise lately.
Finally, I would be happy to volunteer to be part of your support network
(answer your forwarded E-mails from others).
Best of luck and thanks again for setting up your HCL web site. What a surprise to find your web site about hairy cell leukemia. I am
also a survivor. Mine was discovered in 1991 before 2cda was available.
For two years or so I gave myself shots of interferon. It just kept
the leukemia from getting worse..it did not make it better. And I felt
lousy. In May of 1993 I took the 2cda treatment. My port was called a
Hickman and was at my clavical...worked very well. As of today, I am
still in remission (10-15-98), but my hemotologist always tells me,
"your blood looks good, no hairy cells", but we don't know when it will
come back. He keeps me very humble and I appreciate each day. This has
been enforced by the fact that I also developed breast cancer and had a
double mastectomy in 1996....could not take chemo because it would
activate the leukemia....so I am relying on tamoxifin to do the job. If
the breast cancer recurs, or I get another kind of cancer, I don't know
what treatments are available.
I compliment you on putting your story on the net...I would have loved
to have had someone to relate to, but when I was faced with it there
were only 7 other cases in our whole medical area. I understand 6 of us
are doing well.
Best wishes for your continued remission! Right on about the vitamines, etc.! I asked 5 Dr.s about vitamines for "upping" the immune system. One is an Asian Dr., my brither-in-law, as a matter of fact. He grew up in the paddys of Nam, went to school for medicine twice, once in Nam, once over here. He studies Chinese customs, herbs, and the like. He told me point blank, "there is no evidence that Chinese medicine works, STAY AWAY FROM IT!" He said it may work for what you have but it may cause other problems that are worse than the cure. At any rate, it's a big "question-mark."
All my other Dr.s tell me the vitamine-thing is bogus, but I should take a one-a-day (an "E", and a "C" won't hurt, "cause you pee them out, anyway.").
Dr. Saven put it more to the point and said, "Personally, I think it's all a bunch of bullshit! However, if it makes you think you're doing something `pro-active' I guess that's a plus?"
Finally, I think eating good food is what people should do.
--------------------
Some daze I feel like superman, and some daze I get a bit down (psycologically). Like you, I'm doing fine. If I live 10-15-20 more years, well I have lived as long as most people, and it looks like that's well within the relm of possibilities ... and that's today. Who knows what they'll have by then. Mostly, I think we've all been given a wakeup call, that we weren't expecting ... everyone dies, it's just an illusion beyond that. And many people don't think about it until they really get close to the end. We've all been woken up, and we have a couple a decades to go ... again, that's by today's standards.
At any rate whenever I start feeling too good, and too proud of myself I tune into your HCL page, and I'm humbled by it all. Yeah, I think the support group will work, I think it IS working right now through your page. I can tell some out there are scared shitless. I don't blame them. I try to add a bit of confidence toward their direction. Some of it is wishful thinking, and some of it is the truth. All of it is support.
--------------------
Every time I see someone asking, "what causes it?," I'm about an "inch" away from saying, "I think it's something that most people aren't bothered by but maybe for "us" it's standing to close to the microwave, or using colored toilet paper, or breathing fumes from gasing up your car ... Hahahahahahahaha, but that may sound a little more like "sick" rather than humor to many, so I don't say it. I wuz even thinking it might be becasue you heat up your hot water in a styrofoam cup, or use Old Spice deoderant. Hey, you never know.
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