[Sister]

Cxx,

Please be optimistic with your pending transplant. My only advise is to discuss your situation/treatment with the doctors freqeuntly during the whole transplant time. In my brother ‘s case, there were a lot of "standard procedures" initially. You should ask a lot of questions and demand the doctors to "think for you". He received very high doses of immuno-suppressice drugs after the transplant — I often wonder whether it had anything to do with the fact that MDS cells came back.

God bless you.

Sister

[Sister]

My brother was diagnosed in June of this year. He has 5q deletion plus several other chromosome problems. He was put on Revlimid (initially 10 mg everyday, then every other day) and he suffered all kinds of terrible infections — I guess because his white cells were knocked off so much. So the doc stopped it after only 16 days of trying.
Now he just started on Decogen this week, so far no problem.

Sister

[Sister]

BILLB,

Thank you for your response and advice on Sept. 16.

Would like to ask you two more questions. Did your brother have high blast number? Did he ever consider BM transplant? Thanks.

Sister

[Sister]

Mary,

Thank you so very much for your information! I am passing the information to my brother.

Can I also ask you another question? Does your husband have abnormal chromosomes? Apparently this is an indication of poor outcome.

Sister

[Sister]

Kami,

My brother’s doc at UCSF is Dr. Wolf. I believe he and Dr. Damon work as a team. Who is his doctor now? Thanks.

Sister

[Sister]

BILLB,

Thank you so much for your advise.
My brother started on Revlimid for a couple of weeks now, and it is still too early to tell whether it will be effective. But his immune system is SO weak, doctors are just trying to keep him having another major infection.
I would like to ask you one more questions. When your brother went from Cleveland to Hopkins, did your brother initiated it, or was it through the doc at Cleveland? My brother had talked to Mayo, but no decisions yet.
My sister and I will soon get tested to see if one of us is a match for bone marrow trasplant.

Thanks again for your help.

Sister

[Sister]

BILLB,

I am so sad for you. My brother was just diagnosed three months ago and he is not doing well. He also has several chromosome abnormalities. He has had so much infections that doctors started giving him gamma globulin to beef up his immunity (is this common? I suspect he may have an immune deficiency problem in addition to MDS) He just started on Revlimid.

I think the hardest part is the unkown down the road — I have no idea what to expect; how much time does he have? Is his doctor the best? How agressive should he be?

I wonder if going to the “best of the best” place (like Hutchinson, MD Anderson, Mayo, etc) should be done right away? Or should one wait and see? His doctor seems very competent (UCSF).
I would like to have your viewpoint. Thank you and god bless you.

Sister

[Sister]

Zoe,

Thank you for your reply.
I guess MDS is such a complicated and not-well-understood disease, we are all learning as we go along. This Forum is wonderful, I learned so much.

Sister

[Sister]

Hi,
I am new here.
My brother has been diagnosed with MDS just last month. I am still collecting details from him.

I am a Chinese American, so I have been researching information on Chinese traditional treatments. Will report back here if there are credible treatments I find.

Sister

[Sister]

Go to http://www.marrow.org. In Patients/familty section, there ar tons of information on tranplant centers and their expereinces, and success rates.
Good luck.

Sister

[Sister]

Hello,
I am brand new here.
My brother(54,in SF) was diagnosed with MDS last month. I am still collecting detailed information from him. Will share once I get them.

I have done a lot of research myself. For those people who are looking into bone marrow transplant, please go to http://www.marrow.org. Go to Patients/family in the site, there are TONS of information on each transplant center (e.g., how many tranplants were performed, on what disease, success rate after one year etc).

Sister

[Author]

Posts