Dad a "rainy day", searching NBMR for donor

[PamyRn]

Hey everyone
Got change of news yesterday. Now my doctor feels that with my Dad being 70yrs old and testing 8/10 that it might benefit me to search for a unrelated donor that is younger and a 10/10. I thought this was all going to take place in two weeks and now we are looking at possibly 3 months. In one way I feel better that they are looking for a closer match and younger. That has bothered me a bit and I have felt a bit guilty that maybe my Dads stem cells might not be enough of what I need. I guess research is only on older donors with unrelated people and how the recipient experiences more host v/s graft..but no current statistics on older related donors…..the doctor from experience see’s more HVG and just wants the best chance for me. I have confidence in his opinion. I guess he took my case to his collegues and they are split 50/50 on their opinions to use my Dad. Hoping this search will not take 3 months. May have to have another bone marrow Biopsy to check progression of RAEB-2 and maybe start on vidazza. How bad are the side effects of this? My counts are maintaining…platlets are major problem..at 22,000. Wbc high normal and Hgb 10. Hate not being able to work. Short term disability will run out end of April. Not sure what hubby and I will do to make ends meet then. Anyone know anything about long term disability?
Pam

[geebeebee]

Hi Pam,

I can appreciate the change of news — this is a tough decision, and it’s good to hash it out as much as possible. I guess the good thing is if they can’t find a perfect match on the list, then your Dad is still suitable.

I don’t know a lot about the Vidaza, but several folks here have experience with it. I thought they liked to wait on the Vidaza if you were having a SCT, but I could be wrong.

Your platelets are low, but I don’t think they usually do transfusions until they hit 10,000, so you have a little bit of breathing room there, especially if they are holding for you.

Do you have long-term disability coverage through your work? It probably wouldn’t hurt to start looking into the coverage. Usually, they seem to cover a percentage of your current wage — I think mine is 70% — but it should run indefinitely until you are able to work again. Just to be ready, I’d call your HR/Benefits rep and see what your plan’s specifics are.

Best of luck with the donor search, and keep us posted.

Take care,

Greg

[Neil]

Hi Pam,
You mightwant to contact Dr Richard Childs at the NIH. He has had some good results with matched unrelated donors.
Think you can get his number at: http://www.nih.gov
Neil

[Lexingtongrn]

Pam…my friend takes Vidaza. He has to take the nausea pill before and after the shots and it works very well. The shots do seem to increase the fatigue but when the shots are over that is back to normal.

[Jimbob]

As soon as I was diagnosed with CMML, my supervisors and the HR people insisted I go on short term diability (at 65%) and six months later set me up for long term disability (at 60%). I am very lucky because it will continue until I am either able to go back to work or for the rest of my life – with full benefits of any other employee. Jim

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