What Choice do you have

[Sandy L]

When MDS turns to AML does that automatically mean that you must have the induction therapy? Is there any other alternative? Can they continue treating you with Vidaza and transfusions to see if the blast counts goe down? I di ask the doctor and he said Mike had no other options. And that if he survived the four weeks he would have to transplant !

[patti]

Sandy,

Another good question for induction folks on the LLS site. My understanding is induction is the only way to get blast counts down with AML. It’s harsh and the chemo will make Mike sick, lose his hair, etc. That’s how it is. Most of those folks have one round of induction and three additional rounds of consolidation. There is anywhere from 2-4 weeks between each round of chemo depending on how fast a person’s counts come back. Once the counts come back up they go for another round. Depending on what subtype of AML it is different folks go to a transplant after that.

I don’t know if it helps to know how that all works but there it is.

Patti

[Terri]

Sandy,, Suzanne who post to this site alot went through the Chemo for AML and is in Remission for over a year or more now. You may want to look her profile up if she does not respond she can provide you with tons of info, My prayers are with you both

[Suzanne]

Hi Sandy, I am still here Just don’t say as much as I used to because there are so many new drugs and treatments since I went through it all. Things have changed a lot. When I was where youall are there were only 2 options once it went into AML(I had 75% blasts and it had moved from 19% to that very quickly)I could go supportive care or the heavy chemo. I went the heavy chemo-one round of induction (they kept me in the hospital for a month and a second round about 30 days later of consolodation-this time in the hospital for more then a month. they did not let me out until my counts started coming back and hit a certain goal level. I went into remission with the 1st induction round I did not have a transplant. My sister was not a match & they did not want to use an unrelated doner at my age. I did take an experimental drug for a year with the hope that it might prevent relapse-It is hard to believe but it has been three years. I go this Friday for my semiannual BMB but my counts were checked a few weeks ago because I got some unusual infections from a cold and they are the best they have ever been-everything in normal range- so I am not too worried about the BMB results. This doesn’t happen often but it does happen. sometimes the fact that we are react differently is a good thing. Take one step at a time and make one decision at a time after weighing your options at each place. And always always go to a center of excellence if it is at all possible. Good luck to you.

[Sandy L]

Thank you all for posting. I feel better already. We saw Doctor Escelon in UM Sylvester today and we do like her a lot ( Personality ). We have no other choices but the use her and the Team if we want the cancer center otherwise we are in the local hospital. She is suggesting that we go to Jackson Memorial since the resources are better. We are going to be admitted tomorrow. Mike was told by her that he did not qualify for any clinical trial. His only two options were – Induction Therapy – with his chance of survial for the 4 weeks at 10%. or Pallative care with 2 to 3 months to live. He is opting for the induction therapy. 10% is better than no chance at all.

After remission he must go right to transplant. Also a unrelated donor but a good match. While we are in the hospital I will start to post asking for all advice of the doctors in the Nj NY area. I still do not have his subtype.

Again – what would I do without this forum.

Patti – please send me a private e-mail so I can respond to you. Anyone else that would like to send me an e-mail privately at
sandy@ideal-promotions.com

Suzanne – why did you not go on to transplant?

[Suzanne]

Sandy, Not an easy question to answer. #1 they did not even consider a non related donor for me at that time. As I remember,they said if my back really got against the wall they wouold look at a Mini using the child of mine with the best chromo match. I also had read everything I could find about transplants and already decided that I did not want to go that route before the results were in that my sister did not match(my Doc says he would have pressured me if my sis had matched) Somehow taking the one step and one decision at a time has worked out for the best for me. I guess I never asked what my chances were.NIH said that they did not think anything would work (they ran the BMB that showed the progression to AML) and thank goodness my Docs at Hopkins disagreed-As with you, things moved very fast. I know as we got further into it they raised my chances for “longer survival” with every milestone I passed. I got to the better then 50% and then we stopped talking about it. I don’t think they have any idea what will happen with me-We are too individual in the course of this disease as well as individual in the way they choose to fight the battle with drugs. Any kind of sub-type of AML was never mentioned . The only “sub type” I had was in the MDS. And they tell me that I am in remission for both diseases and that either could come back.

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