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Old Thu Sep 7, 2017, 07:34 AM
Rarity Rarity is offline
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Join Date: Sep 2017
Location: USA
Posts: 70
Hello DanL,

We appreciate your reply. Your diagnosis is almost identical to my husbands (RCMD w/grade 2-3 fibrosis trisomoy 8 pantcytopenia.)His blasts are almost nothing which is a good sign?

I'm so very grateful to have found this site as it has helped tremendously in understanding more about this complicated disease. As you said the information out there is not tailored to any one individual's situation. That makes it confusing to say the least.

He has been receiving transfusions, and I believe I mentioned that the trend seems to be about every 8 weeks. The last one a week ago. So we will see how his counts go. Other than the transfusions, he has no other health issues, no treatment, or on any medications, other than the unpredictability of the MDS.

You also mentioned you had no transfusions. Does that make a difference with disease progression? Would you know how many is to many transfusions as far as iron overload? If you don't mind me asking, what was the change that had you go to transplant?

He was very sick and was hospitalized before we were given the diagnosis of MDS.We thought it was just an infection/virus of some sort. He is doing well now and seems to be okay with how the center, he is being seen at, wants him to be monitored.

He recently had another appointment and they changed the transplant to watch and wait. As you mentioned in your case, he is healthy for transplant. We'll take it! Another BMB in the next month or so. Along with weekly blood checks.

I will say this...Had I had not been reading everyone's posts, I think they would have to send me away! Because with that change I would of thought they were out of their minds. One breath telling us he will need to transplant, he has a donor ect. and then to find out it has changed. But reading other's is very helpful and lessens some of the unknowns and anxiety.

Be well,
Rarity
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