Hepatitis C Community
HCV after AML
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

HCV after AML

2517702?1203136509
I have only been part of this website community for about a week and I have already met two others of you who had AML and now HCV.  I would like everyone to be able to talk to each other but I feel uncomfortable giving one person another's nickname even though it is all public anyway so I am doing it this way, hoping you all will meet.  Major things in common we have.  I had thought before this that I was the longest in remission and I find out I was so wrong and that gives me hope !  I would love others to get that same hope that I feel now.  There is a great fear we share and to be part of sharing hope is irreplacable.  

Dennis
Related Discussions
12 Comments Post a Comment
Blank
131817_tn?1209532911
Hi! Welcome to the forum. I don't know what AML is, but do have Hep C. If you want to contact someone,  you need to click on their name, if it is blue and send a message. This will send them a private message.  

I posted to your attitude thread and it somehow never made it there!  Anyway, glad you found us and hope you are doing well!

Linda
Blank
238010_tn?1293989260
AML is is the most common of the four types of leukemia:

    * Acute Myelogenous Leukemia (AML)
    * Acute Lymphocytic Leukemia (ALL)
    * Chronic Myelogenous Leukemia (CML)
    * Chronic Lymphocytic Leukemia (CLL)

In acute leukemia, the abnormal cells are immature blood cells, called blasts, that don't work properly and multiply rapidly. In chronic leukemia, the abnormal blood cells are mature, multiple more slowly, and can still function for a period of time. Acute leukemia therefore worsens more rapidly than chronic leukemia.

According to the Leukemia & Lymphoma Society, 1996- 2003 relative survival rates overall were:

    * Acute lymphocytic leukemia (ALL): 65.3 percent overall; 90.4 percent for children under 5
    * Chronic lymphocytic leukemia (CLL): 74.8 percent
    * Acute myelogenous leukemia (AML): 20.7 percent overall; 54.1 percent for children under 15
    * Chronic myelogenous leukemia (CML): 44.4 percent

Dennis and I were lucky enough to have beaten AML, but unfortunately got hep C through one of the many transfusions we received while being treated.

smaug
Blank
190885_tn?1333029491
the animal rescue thing is so neat...we need folks like you ...good luck with everything..and keep us posted...billy
Blank
254544_tn?1310779332
I am VERY proud to say that I am an AML survivor!  I was diagnosed with AML on December 12, 1983 and did high dose chemo until March, 1985.  I have been in remission ever since.  Yeppers, that's right I am one of the unheard of "chemo" cures of AML and have been in remission 23 years.  I contracted HCV from one of a zillion blood and platelet tranfusions that I received while on chemo.  

I never got to finish my entire chemo protocol for my AML because I went into a hepatic coma for 11 days so I'm even more fortunate that I can say "I SURVIVED LEUKEMIA!"

People often ask me if I am angry about having to battle cancer at the young age of 23 only to have to battle HCV 23 years later.  My answer to them is always "nope, that bad blood gave me over 20 years of life".

Congratulations to you Dennis for whipping AML in the arse... that was unheard of back when you and I fought that disease.

Mouse
Blank
254544_tn?1310779332
Wow, another AML survivor!  How cool is that!  Congratulations!

Mouse
Blank
254544_tn?1310779332
Sorry for the 3 posts all.. but I had an after thought question for you two.

Do ya'll still have your spleens and gallbladders or did you lose them while on chemo?  Are ya'll on treatment?  If you don't have spleens how has this affected you with respect to your platelet production and white blood cell production during your battles with HCV?

Mouse
Blank
264121_tn?1313033056
if you don't mind - I was wondering what the issues are, if any, after losing your spleen?  Does it cause you and additional health issues or lifestyle changes?  I hope I'm not being too forward in asking.

I have a feeling I may not get to keep mine forever.
Blank
131817_tn?1209532911
Smaug;  Thanks for the descriptions!  I was afraid I had one of those pre tx. I had to have a spinal tap and was scared to death. Luckily, it wasn't to be.  

Mouse and other survivors!  Congrats and so glad to hear this. I can only imagine it was awful!  
Blank
254544_tn?1310779332
Hey Ala,

for me, the biggest issue about not having a spleen is the ability to fight infection.  They only real life style change I have had to make is keeping at broad spectrum antibiotic in the house at all times.  I h ave been told that not having a spleen can really mess with platelet production but so far I haven't had any real issues.  Oh and not having a spleen has let me get the flu  shot when they first come out.    They classify us spleen-less folk as high risk for flu.

Mouse

Blank
264121_tn?1313033056
Thanks for the info.  It sounds kind of scary in terms of worrying about infections, but not as scary as I'd feared.  When I worked for Child Protective Services many years ago, I had a foster parent who had a child placed with her - and that child had had her spleen removed (she was very young - about 4 years old or so) - but I'd thought I remembered her having a much worse time, or having to have a special diet or something.  I think I just disremembered the situation, or else she had other medical issues.  It makes me feel better to know that its not as severe as what I thought I'd recalled.
Blank
238010_tn?1293989260
I still have my spleen and gallbladder so I don't have any insight to offer there.  alagirl, really hoping you can make it through with the spleen intact.

Mouse, it's great to meet another AML survivor.  Congrats to you!  I beat it with a bone marrow transplant in '81.

smaug
Blank
414327_tn?1208309637
Hi all, I have been out of town but am back (obviously).  My spleen and gall bladder are intact.  Mouse ... what a complication.  It, however, does not appear to be getting you down and out.  It is just making you stronger.  I am glad you are here for alagirl for hope, support and advice.  Hang in there alagirl.  

Smaug ... what AML stats those are.  If it was 20.7 % survivial in 1996 through 2003, imagine what it was in '81 and '83 when you both rode that train.  You are both miracles.  So good to know you.  Imagine all this support that was not available without the internet.  There must have been a lot less hope and a lot more isolation.  

More later,
Dennis
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
Avatar_f_tn
Blank
dontworry_behappy1
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
Avatar_f_tn
Blank
nan535
Brooklyn, NY
446474_tn?1404424777
Blank
HectorSF
CA
1815939_tn?1377995399
Blank
pooh55811
96938_tn?1189803458
Blank
FlGuy
South, FL