Mike G is joining the Marrow Forums
 

I'm a 66 yo man who was traveling all over the US for work until I was diagnosed with myelodysplastic syndrome with anemia resistant to management and which decreased my red cells, white cells and platelets.
The only initial symptom I experienced was fatigue. When I returned to my home town in the beginning of August 2014, after a three month project out west, I saw my primary care physician and was immediately hospitalized with this diagnosis. I quit a job I loved and started down the road of Vidaza, then Revlimid, and later with Decitabine until I found a compatible allogeneic transplant donor. I received my transplanted cells on February 3 and have been on the road to recovery ever since. I'm living close to the transplant center and expect they will cut me loose to go home in a week or so.
I want to be available to relate my experiences to anyone who may be facing a similar diagnosis and treatement.

Hi Mike,
Sounds like you are doing well after your SCT.

Sorry to hear that you had to quit a job you loved. I love my job too and am not looking forward to having to leave it. I am hoping I will be able to go back at some point.

Tracey

Hi Mike - I sympathise with quitting a well-loved job too. 2+ years down the track though, I don't regret it too often.

It's great that you are doing so well.

Hi Mike I look forward to reading about your transplant. They are looking for a donor for me since I have no family.

Mike G Has Relapsed
 

Since my last post, I've learned that my cancer is back only 87 days after transplant. My bone marrow doctor says that I'm back to the initial point prior to the transplant and there is nothing left to offer me but Vidaza (Azacitidine) five days out of every month for the rest of my life.

Bone Marrow transplants don't cure everyone and I'm one of the ones it didn't cure but a transplant is still a good option to pursue when you consider the alternatives.

Everyone has an unknown amount of time on the earth starting with their birth. None of us know how long but one of every two men and one of every three women will be touched by cancer in their lifetime.

Modern medicine can recognize some of these cells that reproduce incorrectly and go wild early enough to cure or extend our lives with a much improved quality than we if we acquired these conditions ten years ago.

I encourage everyone to find a well respected cancer center and comply with everything they ask you to do to save or extend your life.

Mike, I'm really sorry to hear your outcome. I just received similar notice about three weeks ago after Day+230. I am back on Vidaza seven days a week. My choice will be Vidaza or 30 days of Flag-Ida chemo in the hospital followed by a DLI (Donor Leukocyte Infusion). I still haven't decided which route I will go. We have an appointment Monday to get a clearer picture for the decision. There should be some preliminary results from my BMB a couple of days ago.

Keep in touch with the forum. I wish you the very best. Did your doctor mention the Flag-Ida option?

Mike,
Keep posting your story. I'm a month ahead of you, my SCT was January 6th, and so far so good.
All these relapses sure scare me.

John in Portland

Note to Bailie
 

I'm at the point where I'm back to my original prognosis before the bone marrow transplant - 6 months to a year. I additionally now have the ongoing battle of graft versus host which just makes me feel a little crappy each day. I'm trying to determine what the expected quality of life will be for me as this condition advances. I already received doses of Busulfan and Fludarabine during my conditioning before the transplant. With such a poor prognosis, I don't think I want to go through anything like that again.

I'm going to continue on with Vidaza chemotherapy 5 consecutive days of each month as I've been advised and make decisions based on the progression of the disease.

Johnwc - I wouldn't let this discourage you, everyone's cancer is different and everyone responds differently. I met people during my transplant followup who are alive and well 10 and 15 years later.

Mike, I'm leaning toward the same treatment (Vidaza). I'll get more input from my Dr. tomorrow morning. I am just not interested in 30 days of chemo I don't think. The studies I have found do not seem to make it worth the misery of the hospital for 30 days. I completely understand and empathize with your thoughts.

I am so sorry to hear this info Mike G. I am still new to all this so I have a silly question. Could they do another stem cell transplant since this one didnt work? I have read other people have done another transplant with success.

Re: vidaza
My mother was diagnosed with high risk MDS last May 2014. At 78, her only option was Vidaza...and her doctor was not very optimistic. A year later, she continues to enjoy life and although she finds the treatment a bit challenging (she just feels a bit "off" for the latter part of her 7 day treatment...and since she's so active, she hates the time it takes away from her activities...). Quite honestly, I cannot believe how well she has tolerated her treatments so far....

a year ago, we were not expecting her to survive much more than a few months... So there is always hope! Everyone responds differently. During one of her first treatments, I met a gentleman who was diagnosed with the same ....and he was 3.5 yrs into vidaza and still doing well......

God bless and praying that you all find effective maintenance treatments.
Annette