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Old Sun Dec 18, 2011, 10:09 PM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Bone marrow transplant statistics?

This is my first time contributing to the forum so let me introduce myself first. After experiencing chronic neutropenia for 6 years which was monitored 3 monthly, I began to feel increasingly unwell and had several infections one after the other. By a series of what I believe to be divine providences, I went to a different GP from usual. He noticed that my platelets had also dropped below normal (not severely - 112) and sent me back to the haematologist. This led to a bone marrow scan and I was diagnosed in Sep 2011 with MDS RAEB (10% blasts in peripheral blood). At the same time I was diagnosed with hypogammaglobulinaemia. My red cells are fine so far.

My results on 7 Nov: Hb 11.1, Red cells 3.1, Hct 0.32, Platelets 112, WC 1.9, Neut 1.0, Lymph 0.5

I'm currently waiting the results of my 2 brothers' tissue typing to see if I have the option of a bone marrow transplant.

I'm living a normal life at present, working full time and feeling quite well most of the time - this has been made possible by 4-weekly transfusions of Intragam (gamma globulin) which have fixed the hypogammaglobulinaemia. I haven't had an infection since going on this regime. If I feel the slightest hint, I take 5000mg Echinacea which seems to drive it away.

The questions I want to ask are: Is there anyone on the forum who has the same type of MDS with only white cells and platelets affected? If so have any of you around my age (64) had a bone marrow transplant? If so what was it like? Are you cured or do you still have the disease? Are you suffering from rejection symptoms? If so please describe them. I've done a lot of reading and researching, but there's nothing like real life experiences. Thanks!

Last edited by Cheryl C : Mon Dec 19, 2011 at 07:54 PM. Reason: include age
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Old Tue Dec 20, 2011, 09:29 AM
Greg H Greg H is offline
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Hey Cheryl!

I'm not going to be much help with first person accounts of BMT over 60. I'm not quite to 60 yet, and I haven't had a transplant.

But, if you haven't found it already, I'd encourage you to read Karen's blog at mausmarrow.com. She had a BMT last year in November at Johns Hopkins at age 57. She kept a pretty detailed journal of the event and her recovery. Plus, like you, she had an RAEB diagnosis. Karen is a marrowforums stalwart, and I know that she'd be happy to chat with you about her experience.

Age is clearly important with BMT. After all, our bodies do lose some resiliency as we age. But, sometimes, I think age is a proxy for something a little harder to measure, namely, comorbidities -- that is, what else you have wrong with you.

If you're the proverbial 64 year old with a 45 year old body who runs 20 miles every morning before breakfast and has a one-hour workout after supper, and has never been ill a day in her life, your numerical age may not mean that much in the context of BMT. If you've spent most of your 64 years on the couch beside a six-pack cooler and a bag of chips, and have acquired diabetes and heart disease in the process, you may have a challenge with BMT.

Are your docs recommending a reduced intensity conditioning regimen?

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Tue Dec 20, 2011, 06:25 PM
mausmish mausmish is offline
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Greg, thanks for the plug.

Cheryl, i was a very overweight couch potato (actually computer geek) rather than an athlete but had no comorbidities. I'd always been very healthy until the MDS. The age factor seems to vary a lot depending on transplant center. At Johns Hopkins, they don't seem to place so much emphasis on age. As Greg mentioned, I've detailed my transplant and recovery in my blog. Please let me know if you'd like more info. I know it helped me a lot talking to others beforehand who had already been through it.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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Old Mon Jan 16, 2012, 06:44 AM
Cheryl C Cheryl C is offline
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Thanks for the encouragement

Thanks Greg and Karen for taking the time to respond to my first thread. I've visited your personal blog Karen and found it very interesting - amazed and encouraged to see your blood results after treatment - I don't think mine have ever been that good!! However apart from MDS I don't have any other diseases - have always been healthy and lived a very healthy lifestyle.

I see the BMT/drug trials specialist this Thursday. They have the results of my brothers' compatibility tests and it looks hopeful that my older brother is a match.

Have you heard of any complementary therapies which can help - if not with cure, at least with building up the system for transplant? It seems there are natural therapies which break down tumours but nothing much out there for blood diseases.

Hope you are both feeling well ... Cheryl
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #5  
Old Mon Jan 16, 2012, 10:45 AM
mausmish mausmish is offline
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Hi Cheryl,

That's good news about your brother potentially being a match. The main concern for my doctors preparing for transplant was that I be infection free and have blasts less than 5%. The Vidaza treatments brought my blasts down. Your overall good health is definitely a big factor in your favor!

Best of luck and please keep us posted.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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