Lora -- ask your doctor this -- will the vidaza help or hurt your numbers. I say hurt -- so if you are worried about numbers, I think your gut instinct is right on target -- who really needs it.

On the other had should you relapse it will still be there as one of many alternative -- but why attack something that might not ever occur?

Please pay not attention to me -- it is your decision, but I hope my advice helps. -- dave

Thank you so much Dave. Yes the doc said my numbers would crash again and I might need transfusions again.

Lora

Some time is hard to make decisions when you are facing AML. My mom was diagnosed April 4 2014 with AML FAB M2 with DEL -5. For the last 9 months I had learn a lot about this disease. In El Paso when she was diagnosed the doctor tell us that my mom only had 8 to 12 months to live and because she was 66 years old she had no chances of SCT or anything. We decide to go to MD ANDERSON at Houston in MD ANDERSON the Doctors decide to give her a new drug name SGI-110 so they did 10 days of each month for 3 months and finally one day the doctor when in to the room to give us the good news ( 0 Blaze no minimal residual was found) in other words my mom was in full remission. After that the Stem Cell Transplant team decide that the best chances for my mom to defeat the AML was stem cell transplant in the last week of September they did the transplant everything went normal no problems, now my mam is 100 + 15 days after stem cell transplant in Full Remission no minimal residual disease and 100% donors. She decide to go in to the VIDAZA trial after day 50. I think you should try anything to make sure AML is not coming back. For you information you can read about the vidaza effect and why they think it is the good of GVL effect with out the bad of GVHD. http://www.bloodjournal.org/content/119/14/3361?ijkey=721ec937bc3b4dcad384ddeb0359984f1fb78c4b&keytype2=tf_ipsecsha

Hope this can help you with the hard decision that you family has to make. God Bless You.

It's always hard to comment on whether adjuvant (treatments given to prevent relapse) therapies are valuable or not early on, because to have significant statistics, one needs to have very large numbers of patients enrolled in the trials. I will try to find out the true rationale for using Vidaza. It seems that we all have had slightly different histories going into this. Tony, for example, had a relapse after chemo only, and so it seems that his DLI treatment was tailor-made. Like me, Tony had a T-depleted transplant. Unlike me, he then received the donor lymphocytes (gradually). I have never received any DLI and so I have never had the potential GvL effect of the donor lymphocytes.

It also seems that lymphocyte counts vary quite consistently in our group. Lou has a high normal percentage (45% is generally considered high normal) and has an elevated absolute count as well (the % number is the proportion of lymphocytes relative to the entire white count; the absolute number is, well, absolute!). I have had a very slow rise in my lymphocyte %. Unlike Lou, the % is always at the lower limits of normal, although the absolute count is within the normal range, albeit the low normal range.

I think that our resident scholar, Dave Brown, will agree with me that our future is in the Lord's hands, and that we should not focus unduly on numbers. There are lab values that are perfectly normal for a given individual, even if they are beyond the limits of the bell-shaped curve.

One more thing....it doesn't matter whether or not you have had a medical education to ask your physicians WHY WHY WHY are you suggesting a specific therapy or adjunct to therapy. As Dave said, " ask about that." Ask about everything. It is not obnoxious to do so. Communication between doctor and patient is critical to treatment, and, it is the doctor's responsibility to make his therapeutic plan perfectly clear to the patient. Communication goes far beyond the doctor simply telling the patient what he is getting as treatment and the significant side effects that can occur. More important, the doctor must be absolutely certain that the patient understands what the GOALS of treatment are.

Cliff -- thanks for your kind words ... perhaps I have a few degrees but for sure I could never be an MD like you are -- I could never remember those long names. You seem to remember several of the people on the list and much about them -- I must apologize -- stuff like that does not stick with me. So that is another reason I am soooo glad you are back with us. I will be praying for you, Lora and everyone else on this list and their families. We are all going to make it through this together -- better together -- Thanks -- dave


PS -- I am trying to find out if this has application to AML ...
http://www.mskcc.org/blog/cancer-immunotherapy-named-science-magazine-breakthrough-year

... very interesting -- please check it out if you have time -- dave

Cliff,

As usual, your response is so helpful and calming to me. As a chemo only survivor, I have struggled with low but normal counts. I do tend to fixate on numbers but talking to others helps.

I am so thankful for your wisdom and presence here

Blessings

Julie

Great article, Dave- thank you. I believe so far it's been proven only in ALL not AML but hoping the further they test and dig, the more they will find to help aml patients
This is another ongoing study we were very interested in, actually enrolled in, a study about the KIR benefit (NKcell antitumor GVL effect) that SMK has lead the way on. Unfortunately, the final 4 donors for tony were never tested bc of mix up in paperwork "b.s" taking too long. We were really hoping tonys donor was a KIR gene match but we will never know.
I know Cliff had a KIR donor and is going very well! I like the concept of this study for transplsnt very much and hope they get it approved as standard testing for donors one day
http://www.mskcc.org/blog/study-suggests-refined-donor-selection-could-improve-outcomes-bone-marrow-transplantation-leukemia

Julie -- I am not sure that chemo-only has anything to do with lower blood counts over the long run, although I guess it is possible that the med teams might give stronger doses of chemo to those that they expect will be chemo only -- but for sure don't quote me on that -- that would be the only reason that I could see the relationship.

Oh, also, I see what you are saying -- it could be that with a transplant that we would do better because we are no longer depending on our own bone marrow or stem cells -- rather on the donor cells.

In my case the counts did not come back to normal for platelets or wbc -- I assumed a new normal that seems to be working well for me -- seems to be working OK for you as well. I hope you no longer worry about it -- I never did -- I was just so glad to survive that I would accept it with whatever counts the Lord wanted to give me.

Take care -- love and prayers to all -- dave