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#1
Fri Jan 23, 2015, 12:15 AM
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looking to hear about secondary aml survivors
Hi all...
Finally the docs have given the final verdict that my mom is not an raeb 2 but a case of secondary aml... She was taking medication for essential trombocytis for about a year and now admitted for chemotherapy and bone marrow transplant... Everywhere in the internet they say that secondary aml has the worst prognosis and so does the doc... I am extremely worried... My mom is 52 ... Looking forward to hear from anyone who knows of ppl who survived a secondary aml ... Harini 
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#2
Fri Jan 23, 2015, 05:08 AM
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Not a single person????
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#3
Fri Jan 23, 2015, 06:45 PM
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Dear Harini,
I'm so sorry about your Mother. It is tragic at any time but especially at her young age. Please don't assume that because no one has answered you means they don't know anyone who has survived. It could be there hasn't been anyone who has seen your post that has any experience with it to tell you about. But I would be willing to bet there are many people who have survived secondary aml. And may I say very kindly - what has happened to someone else has no bearing on how your Mother does. All these cases are individual. I wish you and your Mom well. They have made great strides with bone marrow diseases. Keep the Faith. God Bless, Sally
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#4
Fri Jan 23, 2015, 09:51 PM
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Harini,
I suggest contacting the Leukemia & Lymphoma Society (LLS.org) because they help so many AML patients. Most Marrowforums members are dealing with AA, MDS, PNH, or PRCA. The LLS has forums too.
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#5
Sun Jan 25, 2015, 07:35 AM
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Hi Harani,
I tried responding yesterday but am having troubles with it logging me out when I try to post. So I will try a short version. I believe I was diagnosed with secondary AML because I first had MDS that transformed while taking vidaza. I required 2 rounds of induction chemo before achieving remission, my bone marrow never regenerated so I was completely transfusion dependent, so had an 8/10 transplant on the 6th of March, almost 2 years ago!! Honestly all these things gave me one of the worst prognosis and I stopped researching stuff because it was too depressing!  Like Sally said, every case is different... Around the time of my transplant I remember 2 others with all the "odds" in their favour that didn't make it. And others since then. My doctor said without transplant, I had no odds... So I just had to go for it! Now almost 2 years old, I am doing well! Counts are all normal, with a bit of "annoying" rather than serious chronic GVHD. And I have managed to stay out of hospital (except for numerous out patient hours) since 3 & 1/2 weeks after my transplant! I am so sorry your mum has to go through this and you too! But be strong and keep positive! There are success stories out there and treatments are getting better all the time. It is a hard road (and a never-ending one, it seems) with no guarantees but I wish you & your mum the best of luck. Feel free to inbox me if you want to chat further.. Best wishes..
__________________
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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#6
Sun Jan 25, 2015, 07:36 AM
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Yay!! It went through that time!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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#7
Sun Jan 25, 2015, 01:34 PM
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Quote:
Otherwise, the forum system logs you out if it doesn't hear from you for many minutes, and that can happen while you're composing a particularly long post.
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#8
Sun Jan 25, 2015, 01:42 PM
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I'm with Neil,
Check in with LLS. I go to a support group that has an aml survivor.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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