Debbie,

With all due respect, I believe Jo's nurse (In Louisiana) is somewhat confused and possibly thinking of other types of cancer and their applicable treatment paths. I recommend Jo discuses this with the MDA AML experts. Post consolidation, I am not aware of any chemo pill protocol nor have a heard of labs more often than monthly, unless a negative trend is identified.

Hope this helps

Julie

Debbie

Does Jo have MDS? I know that they told my son if he chose not to do the SCT he could try monthly pills and he has MDS.

Like Julie says I would have her talk to her doctors at MDA.

Karen

Definitely talk to the head doc, I've never heard of maintenance for aml. We asked last year what we could do to prevent relapse etc, & asked about any maintenance drug protocols. We were told it's not really used. Esp since Jo has inv 16, unless this is part if the study protocol she signed up for.? ?

Ditto. I have never heard of that.

Cliff

I was diagnosed with AML inv 16 in Feb of this year, and finished my last round of consolidation chemo in mid-july. I am currently on a clinical trial through the Mayo Clinic with the chemo pill Nilotinib, which is approved for use in CML but not AML. I took the pill on days 4-14 during induction and every round of cinsolidation. Now, pending a clean bmx this week, i will be starting to take nilotinib for 8 84 day cycles (about two years), for maintenence chemo. From what i understand, normally maitenence chemo is not initiated in AML but the reason i am getting it is because of the clinical trial, and under different circumstances i would not be gettong maintenence chemo. Because of taking nilotinib, i will have more frequent lab draws after starting tge pill again until it is known how it is affecting my blood counts.

Hope this helps, good luck to you and your sister.

Interesting, they are constantly working on new ways to curb this disease and hopefully cure it once and for all. How does the nilotinib affect you or what are the side effects? is there hair loss, nausea, and the other bad stuff that chemo does to you like drop your blood counts and mess with your brain function? Thanks for posting. Debbie let us know please what Jo finds out, I'm glad she is doing well.
davej

Right now, it's hard to say how Nilotinib in itself affects me as the only times I've taken it thus far was also when I was getting Cytarabine+Danorubicin in Induction and High Dose Cytarabine in Consolidation--I had some minor side affects during each cycle but its hard to distinguish if it was the Nilotinib or the other drugs that caused them. When I start the maintenance chemo portion, probably next week, they are anticipating that my counts will drop but not to dangerous levels. They also know that it can affect the heart and also liver function--both that will be monitored closely. Because side effects of chemo build over time, I'm guessing that I might experience more Nilotinib related side effects as I continue to take it for a longer period of time, but only time will tell.

Is she on a clinical trial? I know there are a few that have some maintenance chemo they are trying that are normally used for other cancer types. Have a friend who had a maintenance IV chemo post transplant (trial)

Azacitidine (VIDAZA) comes to mind normally an injection/iv, I recall a trial with it as an oral treatment, I think that was an over 55 trial. I know the vaccine trial had a strange schedule. Oral rigosertib- I think that one was with vidaza. I know there were some trials with drugs that lack a tradename still going by the drug company letter/number designation drugs, I haven't looked recently enough to remember which are pills.


If she isn't on a clinical trail maybe the nurse misread what she had and was going with an ALL protocol. I'd call or email her MDA oncologist about it.

She is in a trial but I would have thought they would have explained that part to her when they were giving her the details of what the whole trial process would be and they did not. I would think something like that would make an impact on what treatment you decided on so I think they would have told her.

She is due to see the doctor on the 27th if her numbers are up enough for her next consolidation round but I don't think she is going to make that date. We will see with her lab today. She is going to check with her doctor when she goes for her next treatment.