A message of hope and cure!

[thereishope]

Almost 2 years ago on a Friday afternoon my brother received an MDS diagnosis – it was RAEB 2. We spent an agonizing weekend searching the internet and everything we found didn’t give us much hope that he would live longer than 2 years.
Well long story short about a year ago he had a very successful stem cell transplant. Today there is zero sign of the disease. Perhaps too early to call it a cure but it is sure looking that way from every account.
How my brother got to where he is today was that he learned everything he could about the disease. He thoroughly understood the numbers of the various tests and plotted them on a spreadsheet. The original doctor had him on “watchful waiting”, but for my brother’s case he could tell something wasn’t adding up. His numbers were “high” in that he wasn’t too far away from having leukemia, but he felt fine and was asymptomatic. So one day he took his spreadsheet and went to an MDS conference and approached one of the doctors who had given a talk. The doctor looked at him and his spreadsheet and found it unusual – with his high numbers he should look sick and he didn’t. This doctor ended up doing his own set of tests and confirmed those numbers but also let him know he was an excellent candidate for a transplant. As his only sibling it turned out I wasn’t a match – but it didn’t matter – they had an excellent match from the stem cell repository. So my brother (60 yrs old) had to make a decision…continue watchful waiting or go for the cure. He went for the latter. It wasn’t fun but he endured the procedure very well. His stay in the hospital was shorter than anticipated. He had to endure the fatigue in the aftermath, but a year post transplant all his blood readings are solid – like it never happened. Perhaps his case is atypical and I don’t want to give anyone false hope, but I do know that if he hadn’t had that spreadsheet and went to that MDS conference and got a second look from that doctor his outcome may have been very different. God bless you if you are reading this and doing research for either yourself or a loved one. Best wishes for a successful outcome.

[Sherry Pratt]

Great story of hope. I have one very similar!!!

[Michael]

Bravo 👏!

Great story to read.

[ulli kopylec]

I am so happy to read this. My husband got his diagnosis one week ago. MDS EB1 . I am very new to this , I think it’s also called RAEB . I am trying to read about this all I can. And it get’s me very scared . My Husband is only 62 years old and I don’t want to loose him. His Doctor is talking about putting him on Vidaza . He is also talking about a clinical trial ( Glasdegib ).Not sure if we should go for that. Any feedback ? I am so scared of what the future will bring for us. That’s why your story brings hope.

[thereishope]

I remember my brother’s doctor had him on some clinical trials and there were no issues. I don’t remember the name of trials.

[thereishope]

Another thing we learned…the internet can be both a curse and a blessing. Many of the things we “googled” that rose to the top of the search list was older data and information – many accumulated search hits so it rises to the top. You have to dig deeper for the latest data – cure rates and life expectancy is increasing. Your husband’s overall health is also a factor. Look for the best doctor / hospital combination you can find in your area. That is very important. I know how scary it is. Best of luck to you and your husband.

[ulli kopylec]

Thanks for your input. Next Friday he will be seeing Dr Lohith Gowda at Yale Smilow in New Haven Ct. Maybe we will find out in what risk group he is in.

[Michael]

Ulli
2nd opinion from a Center of Excellence Dr. is a must.
My 1st BMB resulted in diagnosis of RAEB1. I went to CofE for 2nd opinion and was classified low risk. That was 2 yrs ago and I remain symptom free without treatment. 2 subsequent BMB indicate no disease progression. See an expert before making decisions.
Best wishes.

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