Bone Marrow Found 9/10 What To Do???

[JIMMYG]

My dad is 64, we were told he has MDS in jan 2013 he is on vidaza, he is handling vidaza treatment very well. He is put on a 6 cycle treatment which occurs once a month for a 7 day period he felt a little sick at first but overal has handled the treatment well. He is going for the 5th cycle this coming Monday, he has had blood transfusions during the treatment also I would say around 4 since jan till now. His blasts and red cells have come down not normal but much better then before the treatment of vidaza. Also he is living ok he goes to work does pretty much what he's always done and is living the same as he was 2 years ago. He has changed his diet and is eatting much more healthier then before.

He is high risk MDS and with the treatment working well and his blood count getting better, we actually got put on the bone marrow transplant list last month. We are East Indian so we were advised finding a match is rare for Asian people, (as my dad has no brothers or sisters). We received a call that a match has been found last week and me and my family along with my dad attended a meeting in TORONTO CANADA AT PRINCESS MARGRET HOSPITAL with the bone marrow team. They meeting had a lot of information and had many doctors we were told they found 3 matches for him and they are all 9/10 which is good but not a 10/10 also we were advised of the side effects the procedure his long hospital stay etc etc.. BUT THE MOST SHOCKING THING IS THEY TOLD US HE HAS A 20-30% survival chance if he gets the transplant ??? Due to his age health and many other factors.

My question is why would they even call us to come to this transplant meeting?
How long can my dad just stay on vidaza?
Should he go for the transplant? As odds have been against us the whole time during MDS since JAN 2013
If this MDS TURNS INTO ACUTE LUKEMIA HOW LONG DOES MY DAD HAVE?
Has anyone recovered from acute LUKEMIA ?
I'm really worried and scared for my mom and dad I just don't know what to do?

If anyone wants to know about my experience or my dads please feel free to call me at 416-454-1116 Jimmy

[Greg H]

Hey Jimmy!

That 20-30% survival chance sounds pretty low, unless your Dad has a ton of other health problems. Usually, 20-30% would be the MORTALITY rate -- that is, the chance of dying in the first year due to the transplant. So you might want to double-check with the folks at Princess Margaret to make sure you heard them right.

You also might want to see if they were planning a full-intensity transplant process or a reduced intensity process. The chemo before transplant is much stronger in the full-intensity, and that can lead to more mortality, particularly among older patients.

As I recall, in the clinical trials that won it approval by the FDA in the US, Vidaza response generally lasted about nine months. But that's an average, and every patient is different, so you can't go by that. Once Vidaza fails, sometimes you can switch to Dacogen and get a response. But, generally, after Vidaza quits working, it's pretty tough.

I believe the frontline treatment for AML is some pretty strong chemo, which might be as bad as the transplant. You should talk about that with the folks at Princess Margaret so you know what that would be like.

Then you'll have a better feel for how to weigh your Dad's options.

Take care!

Greg

[billyb]

Jimmy, Your doctors may feel that transplant might work for the longer term, thats a question you will have to ask you medical team, staying on vidaza verses transplant risk of of potential problems, sucess rate ect. With only 4 blood transfussions since Jan that is a positive, and the blasts comming down also a positive. The problem with mds and aml other problems can occur if you cant keep the leukemia under control or get a remission, as far as how long can you stay on Vidaza? ?... U can stay on it until it stops working or it starts to compicate things, write things down you want to ask the doctor and if they cant give a precise answer at that time, they may not really have an answer quite yet, sometimes things are complicated we look at certain things and doctors look at the whole picture, and its a whole lot bigger then blood counts and blast percentage. My wife has low counts, this week her wbc is 0.7 and she has 0 neutrophils our platelet count hasnt been over 10 in 5 months, we have been getting 2 bags of red and 1 bag of platelets per week for 4 months we still do things, we go on trips, we are just careful, tell our doctor where we are going and know where to go in case of an emergency, we start our 6 th round of Decitibane Monday, right now we are doing good, I have friends that have been doing good not getting a transplant, some have recieved them, we are not eligible for a transplant - that sucks but we make the best of it, like I said right now we are doing good, ask your doctors questions, ( I have made a few friends at the hospitol where my wife goes ) do reasearch, come on here and ask us questions and keep us informed, everybody is different just cause it didnt work for you dosent mean it wont work for me and vice versa