[poppyshope]

Estee
I am so sorry about your progonosis- my father did dacogen when he had MDS and it took 3 rounds (months) for him to see improvement and then we did inductive and it progressed to AML. He now did vidaza and today his doctors said that we should look into hospice and I am doing that now. But yes it has gone very quickly the progression, and now they think it might have gone to the brain. Supposedly the myloid cells are large and sticky and adhere to brain tissue they explained and he is having hallucinations- this has been just 2 weeks. Anyone hear of that? Anyway, sorry to ramble, you might want to speak with hospice because they are end of life care not curative which is what dacogen does so they may have to leave- that is how it works here in NY. Hope this helps i will pray for you and your husband- Jen

[poppyshope]

He is working with Dr Boruchov and Dr Comenzo. He just got out last Satuday after an 80+ day stay for inductive chemo we were on the road to a bone marrow transplant, but there was no remission. On sunday he was rushed to the er up here where we live and is stabilizing to come home tomorrow. While at Sloane we were on the 12th floor you were probably on the 8th but the nurses there are absolutely wonderful!! He now has aml and every thing i have read here so far is looking like this part happens so quick with very little window for opportunity of remission. And not to lose hope, but realistically speaking do most patients die at home or in the hospital- I have been looking into hospice and calvary this seems so surreal to me ~jen~ Poppy’s hope

[poppyshope]

Exactly- our doctor at Sloane explained it like this if one person gets a 100 and one person gets a o on a test the average is 50 but who got the 50? It seems to me anytime they do percents they are talking numbers and we are people so someone has to be the rare one why not us!? And as long as there is a percent there is a chance and that is all you need-right? I am feeling very hopeful tonight, but under the heading confusion what constitutes a bad blast count? What and when are you in blast crisis? Have to ask the doctor tomorrow but if anyone knows-
Hope to you all~ Jen ~ Poppy’s hope

[poppyshope]

I have hired a full time aide and have visiting nurses I just want him out of the hospital and enjoying the kids and us enjoying him. I did get some good news tonight a doctor at MD Anderson in Houston called and told me to call his personal cell phone tomorrow to discuss my dad – his doctor at sloane as well as myself have been trying to get it there with someone – there is always hope! Jen

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