Letters from HCL People
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.
****************My name is Marianne and I am 39 years old. I have read from your web site
for a year now and have found it to be very helpful and encouraging. I
started to write my own story to place on the internet a year ago, but then
changed my mind. After much thought and consideration decided to write, in
hopes that it might give others encouragement such as yours has for me. I
was diagnosed with HCL in Jan. '99. I had been experiencing bruising for
1-1/2 to 2 years. I thought it was odd but never mentioned it to anyone. I
also experienced a burning pain in my left ribs for months. It was
especially bad at night after I had eaten dinner. I asked my doctor about
the pains, she seemed to either be too busy or not wanting to be bothered by
it and told me it was just inflamed nerves. She prescribed Advil for the
pain, which I never took (thank goodness). The pain intensified and after a
couple of months I could feel a large mass in my left abdomen. I knew
something was wrong but must've been in denial because I kept thinking it
would go away. It never did and I ended up going back to the doctor. She
kind of chided me for not taking her advice, but set me up with a sonogram,
lab tests and a CT scan. The scan showed my spleen to be enlarged. I was
referred to an oncologist and had a bone marrow biopsy (boy do those hurt).
I also had a flocytometry test done in which the hairy cell was confirmed. I
did the 2CDA in Feb. '99 and have been in remission for 1 year now. I very
much appreciate yours and other's web sites. When I was diagnosed with HCL,
my doctor couldn't offer me much information about it, other than the
treatment for it. A friend gave me information from this website as well as
other information from the internet. This information helped me to learn
about the HCL and gave me the opportunity to hear what others were
experiencing with this form of leukemia. I have found it interesting to hear
other's reaction and victories over the 2CDA. I feel very fortunate to have
gone through the chemotherapy with so little side effects. I mostly was
tired and a little nauseous. My last bone marrow biopsy done in May '99
showed my bone marrow to be clear. But the flocytometry test showed 1% of
the hairy cell still there. Quite miraculous! I find it interesting reading
about others relapses, CBC's and their symptoms. I realize we are all
different and have different symptoms but it is nice to read and relate with
others who have experienced or are experiencing some of the same things I
am, as well as the emotional feelings too. It helps me feel I am normal and
not just paranoid. I too have low WBC and platelets; WBC 2.4, platelets
130,000. My doctor doesn't seem to be concerned and from reading about Dr.
Savin's opinion, I don't worry about it. I have been having night sweats
since April '99 (it was great to have at least 2 months without any night
sweats after the chemo). I asked my oncologist about the night sweats, he
said I must be going through menopause early because of the 2CDA. I am
wondering if there are any other women who have gone through early menopause
because of the 2CDA? I had several tests to see if it was my estrogen level,
but everything came back normal. My doctor said it could be my thyroid, but
after doing several tests it is normal as well. I'm not sure what to think,
but am trying to accept the night sweats as part of life. It has been a
little over 1 yr. since my chemo and I am noticing that I seem to bruise
easily again and the bruises last for at least 2-3 weeks. I have also been
feeling some occasional pains in my ribs again, but the pain isn't as bad as
it was before my treatment. When it intensifies and is every night, then I
will worry. Thank you again for sharing your comments and experiences. I'm
grateful to know there are others out there who I can relate to. I feel very
blessed to have a form of leukemia that is so treatable and allows me to
continue living my life in a fairly normal manner. I would enjoy hearing
from others about their experiences and feelings.
Sincerely, Marrianne
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I sent you my last e-mail re: your WBC count before realizing you are the
author of my now favorite diary. I just wanted to thank you for what you
did and to tell you how much your diary has meant to me. I'm sure other
readers have also told you how useful it has been to be able to go into a
procedure or other situation knowing what to expect.
As a 44 year old man (with a 5 year old daughter and 3 year old son), I'm
also able to relate to many of the same thoughts and feelings that you went
through.
Again, thanks so much. No need to respond to my last question; I think I
now have your complete medical history engrained in my brain.
Ken R.
****************
From: DeborahAbe@aol.com
To: Dovelake1
Hello - I just found this website & find it very interesting as I am a 9 year survivor of HCL. It's so interesting to read all the different stories & how we all seem to have varying symptoms & reactions to treatment. I was originally diagnosed in 1994 (Jan 1st - Happy New Year!) it took a while for a difinitive diagnosis. I went to my family doctor in November. A blood test showed I was anemic - I took iron pills & continued to decline. I went to the gyn for my yearly appointment. I showed her a strange looking thing on my stomach. It looked like an insect bite. I went to another doctor a few of days later - my regular doctor was unavailable. I told him of my anemia & about the strange feeling of fullness below my ribs. I also had a fever & showed him the "bite"
He scarcely looked at me & just prescribed an antibiotic. I went home and that night had a fever of 104. I felt terrible - chills & sweating. Finally I went to the Emergency room. My heart was racing & I felt like I could barely walk. A nurse listened to my heart & get a doctor immediately. He began to check me & took blood for analysis. He was very upset as my red count was 3! I was immediately put into isolated intensive care. (The ER doctor called the doctor who scarcely looked at me & yelled at him for not taking me seriously.) That night a hemotologist checked my blood & said he thought it was HCL. After a few days & a bone marrow biopsy - the diagnosis was indeed HCL. I was treated with 2CdA, as well as being given multiple transfusions & IV antibiotics for infection. I went home to my husband & 4 children (th youngest was 4 at the time) 3 weeks later. After a few weeks - my bone marrow was clean & my counts good. I stayed that way for 5 years till the HCL reccured. This time I had a pretty good suspicion that it was back. I hated the idea of it - but went back to the hematologist. He treated me again with 2CdA - this time at home. Again, my bone marrow was clean & my counts have been great. Life has been good. I exercise 3 times a week. I take care of my 15 month-old grandaughter who I am thrilled to say I got to watch come into the world. My sons are in college & my "baby" is almost 14 & driving me mad as teenage girls tend to do. My marriage has remained intact - in fact, better than ever. I have had 2 books published - novels for preteens. I recently celebrated my 50th birthday. I say this to encourage others who are going through this. Cancer of any kind is a scary thing to deal with. Unfortunately four days before my birthday, I lost my best friend to Sarcoma. She had also been fighting it for 9 years. We went through all the ups & downs together. She always felt that I was the only one who "understood" how it felt. I've been missing her terribly - maybe my dear friend brought me to this site so that I would have someone to talk to again. She was a wonderful person & that would have been just like her. This website is very interesting. The more I find out, the stranger this illness seems to get . I will keep checking this website & I hope to hear from some other survivors.
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