Lora,

Although I am chemo only and do not have the SCT experience, I would take ALL treatment available especially at a cutting edge center like MDA. I had reduced AriC due to slow count recovery and wish I could have had more chemo. IMHO, if you can tolerate it, I would do it.

Blessings,

Julie

Tony had Vidaza in combination w Ara-c and mitoxantrone as his reinduction as a trial to see if it could help get relapsed aml back into remission prior to transplant
It was also discussed w us as a possible post trandplant trial at UofC too, but we opted for the preemptive DLI instead, as more chemo, after how much he has had, didnt seam to be the right call, his docs agreed
I like the concept of the trial but I need to ask, did they say this is bc you are a high risk case? If so, I agree w Julie and would prob do it or ask about other trials to prevent post trandplant relapse
Hope I didn't confuse you more, let us know how talking w Doc went

Thanks Julie and Lea,

The doc was out yesterday so I see him on Friday now. I talked to the PA yesterday and he said they offer this trial to everyone, so I'd really like to talk to the doc about my specific case.

Thank you for your input and experience with this drug. I've done more research and found it's an extremely common treatment (the drug itself).

Lora

Hi Lora

I agree with Julie and Lea, I would talk to the doctor and then do whatever they recommend in hopes of never having to deal with the AML monster again.

Hugs and Prayers

Karen

Lora
I'm curious, What did your doctor say?

Early on after transplant my doctor was considering Vidaza or Nexavar as sort of maintenance. I did have FLT3 and this was looked upon as a protective measure. She made it clear that it was not customary for SCT patients to receive maintenance chemo post-transplant and this was something being tried at some of the more cutting edge institutions like MDA and Johns Hopkins. How she intended to get insurance or the drug company to pay for a non-standard protocol outside of a clinical trial I have no idea. But since I always had elevated lymphocytes, the so-called natural killer cells, they scrapped the idea and relied on the GVL effect. In two days I will be 2 years post transplant and still have elevated lymphocytes. I guess that's good although I never stop worrying that something will go wrong.

Lou

Lou- interesting! Congrats in 2 years coming up!!!! What do you mean when you say "elevated lymphocytes"? Do u recall your lymph counts?
Tonys day 160 and has 2nd dose of pDLI tomorrow. I'm interested to see what his lymph counts are after the "bump"
As always, I share the same fears, but I'm praying his mild skin Gvhd is GVL effect too. I'm always so nervous when we get labs done and so won't sleep much at all tonight
Will take all the prayers for continued healing , good labs & a safe DLI that we can get please

Lea:
The high end of normal on the chart is 3.3 and I'm always around that or above. As a percentage of wbc it's 44% and I'm always above that, sometomes as high as 60%. My doctor seems to like that but I'm not so sure. I think I'd like if all my numbers were in normal range but that hasn't happened since before I was diagnosed.

I'm following Tony's case closely and I'm rooting real hard for him. I had hoped chemo would do the trick especially with inversion 16 but as they say, you make plans and God laughs. Good luck tomorrow, I'm sure it will all work out fine.

Lou

Lou,

Congrats for two years! Have you started to buy green banana s yet? I laughed so hard when you posted that. I love what you said about our plans vice God s. I'm planing my big family European vacation for summer 2015 and am having a certain amount of stress over it. God willing.

Lea,

I'm praying for great counts, dli and continued cute for Tony

Blessings

Julie

I meant cure for Tony although he's cute as well :-)

I had vidaza as my first round of chemo. I am no expert on it and at this point I think it was a mistake. They backed up and got me into a more intensive treatment, which I am convinced saved my life. Nothing against vidaza -- I have kept up with it and it seems like it works in 50% of the cases in keeping people with MDS (mis-shaped blood cells, which I had) from getting AML. Problem with me is I already had AML. So, it was not really something that I should have had.

That said, I have heard of others getting it for AML per se - -so don't take what I say above as expert -- things change. Also, in the application that they are proposing for you, it is more like the putting off of getting AML (or in your case a relapse), so it might have some definite possibilities. I would be extremely careful with it -- it is a chemo -- and there will be side effects. It works by killing good along with bad blood cells, and in my case got me neutrapenic to where I had to have blood and platelet transfusions. But what they are suggesting for you might be a very much lighter dosage -- so ask about that.

Please keep us up on what you decide and why you decide it -- we can probably help others with that information.

Thanks -- dave

Lou,

Thank you so much for the info on lymph. I have never focused on that. I've really watched wbc, anc, hct and platelets. My latest labs show my lymph percent at 30.1 and the count at 1.3. That is barely in the normal range. You mentioned not all your counts are in the normal range. My platelets just edged in the normal range so I can relate

Blessings

Julie

Lou- wow thuse are done high lymph counts, that's great. Since Tony had a. Tcell depleting chemo (campath) Added to his conditioning chemo drugs. his will take up tony year to get to low end if niemal range they say. Last week he had 17% which is the lowest end of range for lymph. Hoping this DLI boost, even small as it is, will help bump those numbers up

Julie- haha I knew what you meant and thank you for saying he's cute, I agree, and for the constant well wishes, you know I rely on them esp on nights before labs. When will this anxious feeling go away?
Chemo only peeps don't need to worry about lymph count so much. It's a big focus after trandplant though, not only for gVL affect but viral protection etc

Dave- I agree, it's definateky a chemo and is used as such so I'm eager to hear what lot as docs say, about dosage etc. tony had it as an addition to his chemo regiment for reinduction, it was supposed to make cytarabine more effective for relapse aml(in theory) and I've read about it being used after transplant too in trials.
Should be interesting

Lots of type-o's
In that post, hopefully it made sense ;)

Thanks for all comments and information. And so happy to see a dialog going about this. You guys are awesome.

We have talked to my doctor a couple of times about it, basically to determine whether he thinks this would be beneficial in my specific case (instead of him just spouting off global relapse chances). He said that with the chromo mutations I had, he does not put me in the high risk category for relapse. He said for some patients, he would strongly recommend the study, and he doesn't feel that way with me. My body has responded so well to treatment at every step of the way... AND if I did they study, there is is 50% chance I'd be put in the Placebo group. And if I was in the treatment group, no guarantee that it would do anything at all.

So, we have to weigh the positives and the negatives. A huge negative in my mind is more chemo, when we don't even know if it will make a difference. And the length of the chemo would be 5 days a month for a year. Worried about what even more chemo would do to my body.

My numbers have been almost up in the normal range lately... WBC 7.3, Hemo 11.2, Plat 210, ANC 5.51. And I'm starting to feel so much better after SCT, that the thought of spending another year of crashing numbers devastates me.

I haven't been watching my Lymphs though... and my med team hasn't even mentioned it, but looking at my records, the counts hover around low normal to below normal, and my % is typical below normal (10 - 20). I guess I should be monitoring that too?

Anyway, I haven't told the doctor my decision on the study yet. I just don't know what to do.

Thanks for everyone's input. I really appreciate it.

Lora