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From: Rob MacNichol
I have HCL, but my spleen is normal. I think it was detected in the very early stages. My platelets 5 weeks ago were 91, three weeks ago 130, 1 day ago 96! Go figure? My white count was below normal, now 5.1 (in the normal range....down from 5.6...ditto? The RBC is low, but the hemogloblin is in the norm....double ditto?
I run, jump, lift weights..could activity that lowers the immune system be a cause? Especially if you hit 50's? I'm 49...50 in Mar. 98. I was gulping liquid protein for a couple of years. Ate vitamins, and not much else. Could that trigger it? I started taking DHEA. The doctor, Dr. David Oken , Mission Viejo CA said don't take it, it can hurt you. He said stick to a good 1-a-day and do C, E, selenium, etc. I have purchased some of the ones you mentioned, but hesitate to take them, after what he said. Hell, maybe that's what got me into trouble in the first place?
I had pericaditis at 39. Overcame that. It's an inflammation of the tissue OUTSIDE the heart. Myocaditis is a killer. It inflames the heart tissue itslef. HCL is to Leukemia, what Pericaditis is to heart disease. That is to say. it can be overcome, and life surges on. The 50's guys who like to Whap-Ass may be pushing th immune system too hard? I'm like you, I really wonder what caused it, and my question of "Why Me?" is because I wonder why I got the type of Leukemia to get concerning treatment. Why not something else, worse. But then again, I got pericarditis, and not Myocarditis. That was probably because of over exertion, and poor health habits, that I slipped back into over the last couple of years. My Dr. wants to wait and just keep checking me monthly. As long as I'm "normal" he says why do the chemo. I will get a 2nd opinion this coming wednesday.
I like to visualize traffic, at night on Calif. Hwy as the white cells, that stream off to meet the cancer cells (which I visualize as those bugs on Starship Trooprs). Also, I visualize three vertical bars (like when you install certain software). Red, White, and Platelets. The colors red, white , red repectively. They pump up and down rapidly like when you install the software. I imaginge a line the red is normal at 4.6, white at 3.1 (I think) and platelets at 155. I do this while running or falling asleep. Don't know if it works. It seemed to when I really "worked" at it, but not when I only "tried" it. Anyway, if it takes too much "urging" it can be exhausting.
Take care. I look forward to a questionnaire. Hope I do as well as you when treatment time comes...By the way, 10% of people who get HCL never need any treatment at all!
A comrade in arms, ROB
PS: I was in Nam in the 5th Marines....but I do not believe I came across any toxic stuff (ie. agent orange)...You may want to include that in a questionairre, however. I did have a LOT of x-rays culminating in a cat scan (over the heart-thing) back in 1991-92.
From :Rena Graham at E-Kaspar@wiu.edu (on 11/28/97)
My brother was diagnosed with H.C. leukemia about a
month ago, and has now returned from the hospital and
chemo. Bud is an active 76 year old farmer who raises
corn and soy beans in the Midwest. A recent article
in one of the environmental magazines dealt with the
great increase over the last few years in children's
leukemia due very likely to the trememdous use of
herbicides. I wonder if this might apply to adult
leukemia as well. Thank you for your article. I had
never heard of Hairy cell leukemia before, and found
it most enlightening and encouraging too. R.M.
Graham. Using a friend's computer and e-mail.
From: Mark at kaierin@worldnet.att.net (on 11/25/97)
HEY EVERYBODY WITH HCL !!
We all know that this is the -only site- going for
HCL that gives us a way to connect. Your input and
experiences help us all. Thanks. I have HCL and
recently finished 2-cda. I am interested in hearing
from anyone that, after treatment, has dull pains in
their abdomen, lower than the spleen. My doctor seems
very unconcerned. Thanks to the gentleman that
described his long journey with HCL and the multiple
use of 2-cda. I have wondered about the effectiveness
of multiple doses.
From:Robert Baron at bbaron@f22111.mar.1mco.com (on
11/19/97)
I read your diary of your experience with hcl and can
say that you got off lightly. Congratulations. I
first contracted hcl 15 years ago when it was
extremely rare. (I am now 53) I had my spleen removed
(the only treatment at the time) and had no problems
for 7 years. I then had a relapse and with no more
spleens to remove took Interfon which just made me
miserable for about a year. I then took Pentastatin
for about six months which also was extremely
difficult. When neither of these drugs worked, I then
took 2CDA when it was experimental following a
relapse then put me in intensive care. One and a half
years later, it was back again, took 2CDA again and
again returned to normal blood counts. One and a half
years it was back again. I took an experimental drug
which did not help. My doctors withheld 2CDA until
they considered me terminal. I went back to
California (I live in Atlanta area) to get proper
treatment and after 7 weeks in the hospital recovered
enough to return home. During this last period I
required 25 transfusions before I received effective
treatment. I had lost 50 lbs. Following an intense
workout regime and two more doses of 2CDA, my bone
marrow is clear for the first time in 15 years. My
health has been excellent the last two years. My
weight is back to 195 and I can bench press more than
my weight. What this has demonstrated is that
multiple doses of 2CDA is a viable treatment in
stubborn cases. I also believe that my physical
conditioning had much to do with my survival. I hope
this has been of interest. Yours truly, Robert
Baron
From:rox at dpking@swbell.net (on 11/19/97)
I appreciate all the info on HCL. I just got online
and found your website. A member of my family was
just dx and we could not find anything. I've read
your diary and visited your entire web. How helpful
you've been! You can be assured we will frequent your
diary, so please know that your journey has helped
others, even though we are about to begin our
exploration. Thanks again and keep sharing!
From: Sandra Parent at sparent@online.emich.edu (on
11/17/97)
your story is very heartwarming. I'm a pre-med
student at Eastern Michigan University, Michigan. We
are doing a compare and contrast paper on leukemias
and I came across your story. I've included it in my
paper and the instructor was very moved by your
account. You have great courage and give hope to
everyone out there. Those people who think they have
problems should read what you have gone through. God
Bless you.
From: Nancy at enamels@aol.com (on 11/16/97)
Thank you for a better understanding. My father has
HCL and has been going for treatment of and o for 10
years. He currently started up again. If you have any
kind words to say for encouragement I would surely
pass them on. Love my Dad.
From: John Tod at johntod@bnr.ca (on 11/15/97)
My wife has been diagnosed with Hairy Cell Leukemia.
Your diary has given us hope for her recovery. They
say they caught it fairly early. She goes for a bone
marrow biopsy in two weeks. The blood tests have
confirmed she has it but the Doc wants to do the
biopsy as well. Here is hoping you are still enjoying
good health and having fun. Nothing puts living,
appreciating life and having a good time than a brush
with Grim Reaper way before your time. Live long and
prosper. (from a 50 year old "Trekker")
From: Rhonda Lundamo at rlundamo@balsam.une.edu (on
11/08/97)
Your diary was a godsend...I am doing a term paper on
leukemia and it is neat to read an actual account
rather than textbook jargon.
From: Steve McCrea at smcrea@innconnect.com (on
10/24/97)
Reading your diary was like reliving the summer of
1996 for me. I still can't figure out how I got HCL.
It would be interesting to find out. Were you raised
on a farm? Good Luck to us both!
From: Stan at sthielke70848@aol.com (on 10/18/97)
I just finished reading your Leukemia Diary. Today I
was told that I had the so called "abnormal" blood
test from my physical yesterday. I made it to a
specialist today (in a daze) and had the bone marrow,
festive, test. He did use the words "Hairy Cell" and
will know more after the weekend on Monday. I'm
trying to remain positive and I found your writings
very-very helpful. Thanks so much for documenting
your situation. Let you know what happens. Wish you
the best in your recovery!
From: Lois Lavee at andiela@aol.com (on 10/13/97)
Am just beginning the journey to recovery. Am
awaiting my chemo-pact, I have been thinking of it as
me and my shadow. Our dog is ill also. Hope to visit
again and read more.
From: Maria Magdalena at computa@idola.net.id (on
10/11/97)
My ex boyfriend was having a leukimia and he died
last May
22, 1997. Although I was not having a special
relationship with him anymore, I was shocked to hear
of his death. I wondered why must he die so young? He
was a nice man, he never hurt anybody's heart, he
always do good things. I'm reading books and
literatures about leukimia lately. I do not want to
lose someone I love without knowing exactly what is
happening with them.
From: Mark at Kaierin@worldnet.att.net (on 10/09/97)
I have HCL and the description in the diary tracks
very closely to my experience. I just finished 2-cda
treatment and am in the no mans land of waiting. I am
interesed in corresponding with others with HCL.