It's me again-Dacogen schedule?

[kgtuck]

Okay, the standard/prescribed schedule for use of Dacogen is 1 week (5 days) of treatments, then 3 weeks off!!! I have done well on this schedule for the past 2 1/2 years--hgb 12-13; platelets 100-250;1.5-2.5 meaning completely stable hgb and platelets and wbc, slightly down! Have stayed completely healthy, other than a bout with diverticulitis and just treated the one time on antibiotics!

Here's my dilemma - twice, during these 2 1/2 years, I have had to delay my schedule, once due to bad weather and another time recently when I got the diverticulitis--each time my treatments were delayed by 1 week; in other words, 1 week treatment and 4 WEEKS OFF! My counts after this schedule were: Hgb 13 Platelets 250 and WBC: 4.0

Does anyone have thoughts on this! My husband and I feel like by being off the dagcogen just a week longer - possibly my body is remarkably taking over the fight and giving a chance for all counts to become normal! My doctor just says, that's great and "just continue on my regular schedule"

I would appreciate any thoughts anyone has on this phenomenon!

[Lifeguard]

Hi Kgtuck

After a six week break off Revlimid I also had fantastic results Hb 13.7 , WBC 7.3 , Nuet 4.55 , Platelets 130. Taking Revlimid keeps my levels to Hb 13-14, WBC 3 - 3.6, Nuet 1.2, Platelets 110.

I asked the specialist if I could take a longer break, but was informed that those results would drop quickly if I didn't stay on Revlimid. I'm unsure if the advice would be the same for Dacogen. When I was diagnosed MDS I had issues with my WBC , Nuetrophils and Hb counts.

Cheers

Rachael

[Birgitta-A]

Hi Kgtuck,
You know Dacogen (decitabine) doesn't have effect at once but it often takes several cycles before the response. This depends on that Dacogen (and Vidaza) require DNA replication for their function.
http://www.plosone.org/article/info%...l.pone.0017388

That means that if you stop take Dacogen it will take some time before your counts will decrease but probably it isn't a good idea to try this - it can perhaps increase the risk for Dacogen "resistence".

Hi Lifeguard,
Yes, I have read several reports where they mention that there are patients who respond to Revlimid or Thalidomide late (after the study is finished) and that patients who have to stop taking these drugs due to adverse effects can continue to respond several months. I should not try to change my dose if I didn't have adverse effects.

Good that you both have so positve results with the medication !
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006 with all counts low, Thalidomide + Prednisone since June 2010 with good response , latest counts HGB 13.5, WBCs 5.1 and platelets 88.

[kgtuck]

Appreciate your remarks re: dacogen/revlimid schedules! Good point that you both make. Probably best to be extremely careful when thinking of alterating what is working so well!! (Just went a little crazy seeing that 4.0 WBC)! The article is one that my husband has been wanting to read and with his strong background in science is able to interpret for me!

[Birgitta-A]

Hi Kgtuck,
Good that your husband can explain the article.

You know that in MDS (and other cancer diseases) small methyl molecules can be added to important genes in the DNA in the chromosomes. Then the genes, that for example should suppress cancer, are silenced and can't inhibit cancer. If we get Dacogen the small methyl groups are removed so the tumor suppressing genes can function again. Both Dacogen and Vidaza are hypomethylating drugs. Hypo means low.
Kind regards
Birgitta-A