Concerns about bone marrow transplants

[JILL BRYANT]

I have been told I’m a great candidate for a bone marrow transplant as long as I have it done by the time I am 70 (Im 66) I have refractory anemia with ringed sideroblasts and make too many platelets. My Dr also wants to start me on Revlimid. Has anyone taken this? Reading about that drug is scary. My main question is would anyone share their experience with a bone marrow transplant? Im just really scared about all of this even though I was diagnosed 6 years ago
Thank you all

[Sherry Pratt]

I had a transplant at 62. I had RARS too. I took Revlimid. It did not help. I also had 2 rounds of Dacogen and it did not help much. Had the transplant Jan 3, 2017. I am doing extremely well. My sister was my donor and a 100% match. I am very blessed. I have written a book about my journey but it may not be out til Dec. If you want more details please email me at pratt8075@aol.com.

[Nathan Leonard]

I’ve been on Revlimid for almost a year which is specifically designed for my type of MDS del 5q. I haven’t had any real side effects except for an occasional very minor rash. I remember being apprehensive about taking it which is I think is a natural reaction to unknowns. I would not be scared of taking it at all and it has been very effective for treating my condition. Yes the warnings are plentiful but necessary in today’s litigious society.

While treatment has been successful, recently my white blood cell count has dropped significantly resulting in ANC counts below 500 but I remain transfusion independent. During my last doctor visit, there was some talk about a bone marrow transplant as an eventual possibility.

Sherry your post caught my attention because everything I was reading about this gave me concerns about age, risk factors, mortality rates, side effects, etc. Glad to see someone my age has had success and doing well.

• This reply was modified 5 years, 8 months ago by Nathan Leonard.

[Susan Cullman]

My husband is 79 years old and has been told he is a good candidate for transplant. As of next week, he will have completed 6 rounds of azacidine which has much improved his blood counts. He is in remarkably good health. He has a donor. Is there anyone out there who has gone through a transplant at his age?

[rar]

Close but not that old at just short of 74. My doctors ignore age, physical and mental condition more important.

Ray

[Susan Cullman]

Thank you for replying. Did you have a donor bone marrow transplant?

[rar]

My sister was a 10/10 bone marrow match for my allo transplant. I provided a cure for the MDS, but I am still fighting GVHD.

Ray

[Susan Cullman]

Again, thank you for sharing. Congratulations for beating MDS! How long ago was your transplant? How uncomfortable is it fighting GVHD? Have you been able to resume your normal life?

[rar]

Transplant was 4 years ago. GVHD is usually not a problem 3 years from transplant, mine is rare. It is a major annoyance. The 2 months in the hospital was bad. The nurses told my wife that I would probably die. I showed them. About half the time I can feel reasonably normal. It is better than pushing up daisies.

Ray

[Susan Cullman]

Well done! Love your fortitude. Where were you treated? Susan

[rar]

University of Colorado, Aurora, CO

[Nathan Leonard]

Visit with treating doctor today ended with a discussion to start the process for bone marrow/stem cell transplant. Would appreciate thoughts about what to expect.

[Mark Simpson]

I am 66, and have MDS, I have extreme low white blood cells 1.2 and sometimes lower. Was told I am at too much of a risk for a bone marrow transplant. It depends on the doctor prognosis and your overall health.

[Cristy Johnston]

I’ve been through kidney-transplant journey with my husband…now my dad (age 69) has MDS. We were JUST diagnosed yesterday and are waiting on cyto tests to determine aggressiveness. He is RAEBt-1 – ALL his blood types are low. I am hoping he comes around to at least entertaining the consult with the specialist…would love for my son to get to grow up with his paw-paw…prayers welcomed for his stubborn self! 🙂

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