When to start Chemo?
 

My husband was diagnosed with RAEB-1 in April 2008. The doctor started a regimen of Procrit which hasn't seemed to increased red blood cell count. My husband was given a transfusion in October when his HGB dropped to 7.3 and a second transfusion in December. His white blood cell count is currently 4.5, platelett count currently 69. The doctor wants to do another bone marrow test (last and only one was in April 2008). She is telling us that it is up to us to determine when to start with Vidaza, but the sooner we start, the higher the counts will be at their lowest points during the Vidaza treatment - thus minimizing dangers of infection/illness/bleeding. My husband is feeling pretty good most of time and would like to postpone beginning treatment if that is a reasonable thing to do. We must make the decision and we are feeling like we don't know enough to do a good job of that. The bone marrow results will be another piece of info that we consider, but we need advice/more info. Please give us your advice!

Chemo?
 

Hi DianeD,
Since I am very afraid of adverse reactions I am not the right person to give advice about when to start treatment with chemo. Your husbands situation is different from mine since I still don´t have any blast cells (as far as I know).

In any case Vidza is supposed to be the best drug for patients without the chromosome aberration 5q deletion (75 % of them have good effect with Revlimid). At least 58 % of the patients have some kind of hematological improvement with Vidaza.

MDS is not a disease but a syndrome – an association of several clinically features, signs and symptoms that often occur together. Some patients have good effect with Vidaza, other with Dacogen and some with the new drugs histone deacetylace inhibitors like Epival (valproic acid) or Zolinza.

If your husbands blast cells in his bone marrow have increased since April 2008 he could perhaps try Vidaza (5 days in a 28 day cycle) for 4 cycles.

There are methods coming where they look at the degree of DNA hypermethylation during the second Vidaza cycle (Vidaza is a hypomethylating drug like Dacogen). In the future we won´t have to wait so long before we know if Vidaza or Dacogen will have effect.

http://abstracts.hematologylibrary.o...urcetype=HWCIT

Kind regards
Birgitta-A
69 yo, cx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal for iron over load, Neupogen for low white blood cells, asymptomatic

Thanks for your reply
 

We appreciated your support and encouragement and the new information you gave us. For now, my husband decided to postpone the chemo that the doctor said he could start this month, watching the weekly white blood and platelet cell counts and hoping they will hold or climb - getting red blood cell transfusions as needed, which has been about every 5 weeks. The big question that we ask ourselves, and won't know until he has another bone marrow is - what are the blasts doing while we are not looking at them? Reading the forum and everything else I can, I still feel uneasy about missing something important that could make a big difference in my husband's future. Our doctor wants to stick to 7 days of Vidaza per 28 cycle - didn't seem to be aware of info to validate change to 5. Do you have a resource that recommends 5 day administration? If so, please share with us. Five sounds a lot better than seven when you are on the receiving end of the needles. Thank you.

Chemo?
 

Hi DianeD,
Thank you for the kind words :)!

You know that the 5 days treatmen is a relatively old knowledge - if your dr not have read about that I suspect that he isn´t up to date considering other aspects of MDS treatment either.

Here is an abstract from the American Society of Hematology 2007 - ASH is the best conference in the world for hematologists and they should all follow the abstracts even if they don´t attend the conference.
http://abstracts.hematologylibrary.o...urcetype=HWCIT
As you can see 5 days treatment gave the best result.

Then we now know that even the dose 75 mg/kvm is discussed - perhaps a lower dose could be just as effective and give less adverse reactions.
Kind regards
Birgitta-A