My disease has evolved

[Coach6533]

Hi Folks

For the past 8 years I have been transfusion dependent due to SARS (sideroplastic anaemia with ringed sideroblasts). But in the last month the disease has evolved to MDS. I have always known there was a 50% chance of this happening. So now we have no choice but to go the bone marrow transplant route. I live in England and am very fortunate that Prof Steve McKinnon will be my doctor for this. But, I am 61 and really only eligible for this procedure because there is no alternative.

I also have other medical conditions which mean I have to find a donor who is compatible. There is a large donor data base in England but finding a match will not be easy.

Can I ask if anyone on this site has experience of bone marrow transplant at my age and from a donor? I am so fearful of the risks although I know a successful outcome would change my life.

All stories (happy and sad) are welcome.

Many thanks

Sally

[Mary4Mike]

Dear Sally,

My husband had a transplant 2 years ago at the age of 64. His donor was his sister who was a perfect match. The only other medical condition he had (has) is high blood pressure which he controls through medication. He too, had MDS RARS. He was diagnosed 10 years prior and tried all the available drug treatments. He was getting transfusions every other week or every week when he decided to go the transplant route. He was not getting a good response anymore with transfusions and this was something that the doctors had warned us about. As the saying goes, he was sick and tired of feeling sick and tired. His red blood cells were the only thing affected. His platelets and whites were always normal.

You are SO correct in saying that a successful outcome would change your life. It has changed my husband’s. If you have any questions along your journey, please ask. Another good forum for transplants is the MarrowForum.org.

All the best and keep us up to date on what is happening with you.

Mary

[Coach6533]

Dear Mary

This is such a hopeful message for me. Thank you. May I ask you or anyone else who has a similar history, was your husband unwell for a long time through the process? I am a consultant and I am trying to figure out if there will be periods that I absolutely can’t work combined with periods where I will have good days and be able to meet with clients. Or, should I just expect that once we start, 6 months is given over to this process?

Thank you

Sally

[Mary4Mike]

Dear Sally,

My husband is in sales and he was able to continue working by phone only. There is a period of time when you have to take precautions around people. Infact, you really need to avoid going out except to doctor visits and then you will wear a mask. This goes on until your counts are normal. I would say that 6 months may be the average recovery time. Everyone is different. As far as my husband being unwell, I have to say that after reading the accounts of others and seeing transplant patients in clinic, he was blessed with a very easy transplant and recovery. Some of the treatments he took for MDS were far more brutal than the transplant, but then again, everyone’s experience is different.

Hope this helps and I am here for more questions.

Mary

[Coach6533]

Thanks so much Mary. I am delighted your husband had a relative easy time.

Sally

[Kenneth_In_Va]

Hey Sally,

I thought I would pitch in my "2 cents" with regard to what can and cannot be accomplished with this condition.

Of course, as this forum reflects, MDS in general is a highly variable condition effecting many of us in different ways.

I was diagnosed with the 5q syndrome variety about 30 months ago. (I also have an additional chromosomal abnormality to the 5q). I have been very lucky in that my health had been great up to the time I was diagnosed. I have also been lucky that my condition has responded very well to Revlimid. I have been able to work continuously throughout these last 30 months. I have a "desk job" as a Network Analyst.

My Red series counts are 3.23 for RBC, 12.5 for Hgb and 37.2 for Hct. My platlets run around 120 and neutrophils are ususally abt 700.

I wish you good fortune and caution you against reading anything about MDS that’s more that 3 years old as great progress has been made of late.

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