[PattiDean]

Originally Posted by Al's Wife

Patti,

You know we were told that since Al did not respond to Vidaza, he would not respond to Dacogen and they gave it less than 2% chance of working. But we figured 2% was better than 0%. Fortunately, the Dacogen has kept him stable for the last year and actually his numbers have been up the last month and he did not have to have a transfusion last month. He has needed monthly transfusions for the last year.
So if you decide not to do the clinical trial, you might consider trying Vidaza. And even though we've had 3 or 4 doctors tell us if you don't respond to one, you won't respond to the other, my husband and others on and off this forum are living proof that some people do respond to one and not the other.
I mean, if the doctors say there are no more options, why not try the Vidaza or perhaps Dacogen with another drug. I know they are doing some of that "out of the box" (Kirby's term - God rest his soul) thinking at some of the hospitals, where they will put you on two different drugs.
Good luck and God bless. We are praying for y'all.

Hi Linda!

It is so nice to hear that Al is doing better and better, you both have been through so much up until now.

Dean and I feel like we are hitting a wall. He was doing well on Dacogen for almost a year. Though his counts weren't great, they were low, they were still fairly good. His white's gave him the most problems, so he had to get Neupogen frequently, and sometimes platelet transfusions, maybe once a month or so. Then in June all of Dean's counts began to fall, fairly quickly also.

His oncologist in Clearwater said that the Dacogen was no longer working. Dean did another BMB, it showed his blasts were 15% and he now had Myelofibrosis. A previous BMB in September 2012, after being on Dacogen, showed blasts of less than 5%, so they were now increasing. This oncologist sent Dean to Moffitt for a second opinion. Over the last couple of months Dean has been very, very weak, having difficulty breathing and not much of an appetite. He had two transfusions of PRBC and platelets which seemed to help for a few days.

The doctor at Moffitt was very kind, but he told Dean that once someone is on Dacogen or Vidaza and they stop responding, then usually the other drug will not work, so he said Dean would not do good on Vidaza. He asked Dean about going on a new trial, saying that is Dean's only option. We haven't made a decision regarding that yet, so much to think about.

Dean and I want to try Vidaza, but both his oncologist and the oncologist at Moffitt are telling us "no".

The other problem we had today. Dean's counts are low, he had a transfusion yesterday and his counts came up slightly today, but still low. His platelets are now 13, they were 7 on Tuesday. His hemoglobin is now 8.2 today, it was below 8.0 before the transfusion.

Dean's oncologist here says they won't do a transfusion unless his platelets are below 10, and his hemoglobin has to be below 8.0. The doctor in Moffitt said those numbers do not work for everyone, and that maybe Dean needs transfusions at higher numbers, which his symptoms suggest.

After labs today, his oncologist here refused to schedule Dean for a another transfusion, he says we can wait until Monday. Dean is so tired of being tired, he is talking about giving up now. When we left the cancer center today he felt defeated and was in tears. Monday seems so far away, and we don't know where to turn now.

No transfusions unless his counts go lower, and no Vidaza, even though Dean wants to give it a try. He would rather do that than the trial.

We are trying so hard to stay positive, but today was a challenge. Sometimes I think doctors don't even understand how difficult it is. I know they have to follow insurance guide lines, but the oncologist in Moffitt said that if a patient presents with symptoms like Dean, they can receive transfusions. Is that right?

Thank you Linda for your very kind and positive post. I remember Kirby and "out of the box"! Wish we had an oncologist who felt the same.

Lots of love, hugs, faith, hope and prayers always,

Patti and Dean