Wife of deceased retired Navy MDS patient

[Linda C.]

I just happened on this site as I was trying to research how many Navy veterans had MDS and were in the nuclear field. We spent four years of our lives living with and fighting MDS. My husband had a mini stem cell transplant at Seattle Cancer Care Alliance with an unrelated donor. He passed away six years ago from complications of that transplant. The disease was totally eradicated. We spent four months in Seattle and would be happy to discuss the experience with anyone who is considering a bone marrow transplant to cure this horrendous disease. In addition to the MDS he also had myeleofibrosis. He was a nuclear technician in the Navy. I'm sure he's not alone in getting this disease. My heart goes out to those of you that are fighting for your life. If I can be any assistance to you please feel free to contact me. Linda

[Coach6533]

Dear Linda

Thanks for wanting to share your story. I have had sideroplastic anaemia for 8 years and up until now, transfusions have kept me well. I also have small cell lymphocytic lymphoma.

Last week I was told that the anaemia has evolved to MDS and the only option for treatment is a bone marrow transplant. At my age (61) I know this is a risky procedure.

I am seeing the specialist on Wednesday but I know we will be involved with RIC-Allo, which is less sever conditioning but also means a high chance of the MDS coming back.

What I can't get a grasp on is how much this process will take over my life. When will I be unable to work? And for how long? In the steps leading up to the actual transplant, will I be sick?

I, too, will be cured if this works, which seems like a miracle after so many years of managing the disease. I am thrilled you and your husband had time to be together while he was cured. My husband will love to think there may be a time he can stop worrying about me.

I would be honoured of you wanted to share any more of your story with me.

Many thanks

Sally

[squirrellypoo]

What I can't get a grasp on is how much this process will take over my life. When will I be unable to work? And for how long? In the steps leading up to the actual transplant, will I be sick?I highly, highly recommend reading this "7 Steps" book (http://leukaemialymphomaresearch.org.uk/sites/default/files/Seven%20Steps%20(April%202011)_0.pdf) (ask at the Royal Free for a free printed version if you prefer a hard copy). It's a fantastic guide to all the things that go on in a transplant, and what to expect during and afterwards. I found it extremely helpful! And it just so happens that the author is my post-transplant nurse at Kings, and she's wonderful in real life, too. :)

[Coach6533]

I just printed out that book and you are right, it is amazing. Thanks for the reference, I really appreciate it.

Sally