[Nathan Leonard]

Hey there. I am 1 yr 2 months post BMT. I had MDS del 5q with intermediate risk score. BMT is the only thing considered “curative”. While I too struggled whether to do it I’m glad I did. I was given success rate of 80% and additionally was told that it would transform into AML at anytime. This was a big motivator to head off the disease getting worse and glad I did. While at the hospital I noted those like myself did a lot better than those who already had AML. Also, I’ve read many BMT survivors who lived years after leading normal lives with minimal side effects, GVHD being one. Shortly before starting my BMT I met a lady who was 20+ years post and was normal in every aspect. Saying all this I was blessed to not having endure most of the unpleasant side effects that COULD result. However I did have my body temp climb to 105 at day +3 when immune system was completely gone. As a result I experienced a condition call “rigors” which is a violent uncontrollable shaking of the body. The cause of high temp was a result of 3 different kinds of bacteria invading my body and central line which had to be removed. Also, shortly after being released from hospital I experienced minor bout of GVHD all over exterior of my body but the medical team said that was a good thing. Even after enduring this I know that the decision I made was the right one. I am now living a healthy and normal life and enjoying ALL of the things I like to do such as, playing golf, softball, fishing, camping, teaching, and learning to do a lot new things. The end result is that I feel better than I have for years and do no regret doing it for a second. A suggestion, don’t focus on all of the negative possibilities and establish specific goal(s) to achieve that you now can’t do. It made a difference in my attitude and approach. God bless and pray for the strength and comfort. While you did not choose to have this disease it did happen to someone (you) that has the capacity to overcome this mountain. Know that you are not climbing it alone. Let those of us who gone before on this journey show you the way!

[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.

[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, 7 months ago by Nathan Leonard.

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