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414327 tn?1208306037

HCV after AML

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
12 Responses
131817 tn?1209529311
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
238010 tn?1420406272
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
190885 tn?1333025891
the animal rescue thing is so neat...we need folks like you ...good luck with everything..and keep us posted...billy
254544 tn?1310775732
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
254544 tn?1310775732
Wow, another AML survivor!  How cool is that!  Congratulations!

Mouse
254544 tn?1310775732
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
264121 tn?1313029456
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.
131817 tn?1209529311
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!  
254544 tn?1310775732
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

264121 tn?1313029456
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.
238010 tn?1420406272
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
414327 tn?1208306037
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
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