Readings Up and Down. Would like some stabilization.

[Rich D]

Finished second round of Vidaza a little over a week ago. Have been monitoring my charts online, a nice service they provide, and everything from my temperature on down varies quite a bit, some more than others. Just to give folks an idea of what reading I get, below I'm posting lab work for quite a few prior weeks. I wonder if most of you have these ups and downs?

Well copying and pasting on here didn't quite work, but regardless I'd still like to know if many of you experience this?

Going for two bags of blood today, probably will last about two weeks.

Good luck to all!
Rich

[milliken2]

Hey Rich;\

Earl's readings have been up and down as well. He only lasted 12 days before he had to be transfused with 2 units of PRBC's last Wednesday - and since that was his week of chemo - by Friday his hemoglobin was down to 8.1. We opted not to have him transfused on Friday - and today, he is back there again for another 2 units. I have been monitoring his counts - and it goes without saying that the week of his chemo - they drop drastically. The Dr. says it takes between 4 and 6 sessions of either Dacogen or Vidaza to see if they are working properly. Earl just finished his 3rd sessions last Friday - and is tired and weak. To be honest, I don't see much change at all - and that goes for all of his counts. The Dr. wants to do another bone marrow biopsy after his 4th session - so I guess we will go for that. When we did see Dr. Sekeres at the Cleveland Clinic - he said to continue with the treatment we were on, but if we had any problems to let him know. He suggested that possibly ATG therapy would work if Dacogen or Vidaza don't, To be honest, I don't know how much more Earl can take - he is getting tired of living at the Dr,'s office and the hospital, and I can't say I blame him. The hema/onc here says that ATG is 'old school' and that he wouldn't recommend it at all. So - who do I listen to - Cleveland, or here? I sure hope things get better for you.
\ Beth

[Birgitta-A]

Hi Beth,
As far as I understand almost every patient who tries Dacogen or Vidaza is having the same problems as Earl and needs a lot of supportive therapy while he/she is waiting for the response. http://www.mdsbeacon.com/news/2011/0...s-mdsasco-2011

Your doctor is right when he/she says that it can take 6 cycles before you can evaluate the results.

He/she is wrong if he/she thinks that ATG and similar drugs are old school. If the patient meets the criteria that kind of drug could have very positive effects. I am aware of that you know that Dr Sekeres is one of the very best MDS experts.
Kind regards
Birgitta-A