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[poppyshope]

Hello all I am new to this site and posting in general. My Dad is 62 (will be 63 10/1) and has been down a long road this year. Last October he was diagnosed with intermediate MDS and did 3 rounds of Dacogen from March to June and went into remission for like 30 seconds. His Doctor at Sloane Ketteriing in NYC decided to go for the BMT and start with inductive Chemo- so on the road to to a cure right? After 3 months of hospitalization and 2 rounds of inductive chemo he never made it into remission in fact he now has AML and the transplant has been taken off the table. He has an active bacterial infection in his liver from low counts, and is refractory to inductive chemo and dacogen. He is also transfusion dependent on blood and platelets with the transfusions every other day. He is now going to do Vidaza to try and keep the transfusions at bay. Anyone here know what happens now? I feel like i am in the middle of a nightmare and can’t get up. Any thoughts would be greatly appreciated… I am an only child and all the care is on me and I have 3 small children 7 and 5 and 9 mos, so I have to set up home care for him- any ideas there? I bought him an apartment 4 minutes from me when we were going for a transplant because of the germs with the kids so at least I have him close. Anything you all can suggest, would be greatly appreciated! ~Jen~ Poppy’s Hope

[Zoe]

Jen,

I am so sorry to hear what your father and you are going through. Can he get a nurse or an aide to come in and help out? I don’t know what to tell you about treatments next, I am sure someone here can help.

Zoe

[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

[katiebear]

Hi Jen,

I’m sorry to hear about your dad. My dad just had a SCT at Sloan on July 19th. So far so good for him, with a few minor setbacks. Who is your dad’s doctor at Sloane? I will put you guys in my prayers. This disease sucks.

Katie

[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

[jaxem]

poppy
wow! i guess i’m missing something. your dad went into remission which is less than 5% blasts with dacogen, then was scheduled for a bmt, so I guess you have a donor. was it “induction chemo” or the chemo given prior to doing the bmt like fludaribin? were they going to do full body irradiation? i’m assuming then that something happened & they saw blasts in the peripheral blood or did a biopsy to see blasts greater than 20% therefore aml. vidaza is similar to dacogen so i’m wondering why go to vidaza if dacogen wasn’t working. sounds like the docs at sloan are confused and are recommending MD Anderson. i can see why you’re confused. I certainly am! I recommend getting him to Anderson. nothing about this disease is typical. sometimes things happen fast & sometimes slowly. patients can die wherever they are. he needs a primary caregiver. if you’re not around, maybe you can arrange something with friends, neighbors, etc. you’ve got a lot on your plate. All the luck in the world in dealing with this thing.

[katiebear]

Jen,

My dad was on the 8th floor for his transplant. Prior to that though, he spent months on the 12th floor getting into remission. You are definately right about the nurses, they were absolutely wonderful to my dad and us. The 8th floor paled in comparison. I will continue to keep you in my prayers. I hope your dad does well at MD Anderson.

Love,
Katie

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