Brother not a match WHAT NOW??????
 

:(Hey Everyone: Well as it says Brother not a match. Just got back from Moffitt, had BMB, waiting on results. Revlimid seems to have gotten the 6% blasts out of my blood. Don't know about marrow yet. Been really sick on the combination of Vidaza and Revlimid, cutting Revlimid mg down from 10-5, hope I'm not as sick. Its greating really hard. Two Blood Transfusions this month, had platletts friday a week ago and counts still not up. Second blood transfusion at moffitt last week. please keep me in your prayers, as I do you all. THIS REALLY SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Anneg
God Bless

SCT
 

Hi Anne,
There are many members who know much more than I do about SCT and you will get answers from some of them. You can get stem cells from unrelated donnors and from cord blood.

Too bad that you are sick when you are treated with Vidaza and Revlimid. There are many drugs you could try for example Aloxi to prevent nausea.

Hope your counts will start to increase!
Kind regards
Birgitta-A

Anneg,

I'm sorry to hear that your brother didn't match you. There was only a 1 in 4 chance of him matching you, but we really hoped he would. Having a match for a transplant is something you want to have as an option while you try to get your counts up with drug therapy.

They are probably doing a search of the bone marrow registry now. Some patients find matches right away while others have to wait to find someone who matches them. The odds of a registry match vary depending on race/ethnicity and also on which ethnic groups are best represented in the registry. It also depends on how common your blood antigens are (not the same as blood type). If you inherited the more common blood antigens from your parents then that increases the chances that somebody already in the bone marrow registry has the same antigens, i.e., matches you.

Even though searching the registry is quick (it's a giant database), it can take weeks or months for the whole process of lining up a donor because the National Marrow Donor Program has to contact potential donors to see if they are available and qualify medically.

Meanwhile, your doctors will probably continue to adjust your drug dosages and maybe the schedule of cycles to try to get the best results with the least side effects. Good luck!

Hi Neil
 

Thanks Neil for all the support and info. Yes they did put me on the donor list. Both Doctor here and at Moffitt, say 4-6mnths. My one draw back, yes of course there is one, I have native american in me. But some good news, BMB came back. blasts went from 15% to 5% in Bone Marrow none in blood. So combo of Vidaza, Revlimid is working, just making me really sick. So lets see this month. Revlimid from 10mg. to 5mg. So we will see. Again Thanks!!!!!!!!!

Anneg
God Bless

Yes, 4 to 6 months is a typical estimate.

Since Native Americans are part of your heritage you might pass along a message to friends, extended family, neighbors, coworkers, church groups, members of your book club, and every other group you belong to: They could help you and other patients with similar backgrounds by hosting bone marrow registration drives targeting Native Americans. Every new bone marrow registrant who shares your background gives you slightly increased odds of a match, and it also increases the odds for every other patient with a similar ethnic background.

It's easy for people to join the registry -- they just fill out a form and get their cheek swabbed -- but somebody has to organize the event. They can click here for more information on how to get started, with help from the National Marrow Donor Program.

I don't suggest that you host a bone marrow registration drive yourself. I'm sure you are busy enough just trying to manage your health. But when people you know ask what they can do for you, this is something very specific and very important that you can tell them!

Thanks Neil
 

;)Thanks Neil,
Your info is always go encouraging. And yes, people have asked, I did not know what to tell them. I will check that site out. Again Thanks so much.

Anneg
god bless