Vidaza effectiveness????????

[franm]

Hi:

I just came back from Dr. Michael Carroll talk about Vidaza and Cell Transplants or Bone Marrow transplant. He also talked a lot about Vidaza and I asked him about what the Oncologist that Jim is seeing said. She wants to re-start him on Vidaza but with a lower Mg. The doctor that we talked to said that she should not lower his mg., because he has Leukemia and she should be much more aggresive.

Anyway, he is in Tucson and we are in the Phoenix area and it is way to far and HOT to drive to Tucson.

One good thing about living here is that the Hospital is 5 minutes from our house.

I can’t lift my right arm up for 6 weeks and that is driving me crazy. Can’t clean the floor, make the bed or doing any housework for several more weeks.

Fran

[Dennis]

Fran,

I wanted to go but wasn’t able to. What did Dr. Carroll have to say about Vidaza? Thanks.

D

[franm]

Dennis:

he talked a lot about Decitabine (Dacogen) but said that it is an off shoot of Vidaza and does the same as Vidaza. He was also for Bone Marrow transplant and stem cell transplant. He thinks that someone your age would have a longer mortality rate.

Most of the stuff he talked about, Jim and I didn’t understand.

If you want more information, just call me.

Fran

He told Jim that he does have Leukemia and that increased dose of Vidaza might help him.

Fran

[franm]

TO ALL THE FATHERS ON THIS FORUM I WISH A VERY HAPPY FATHER’S DAY AND A LONG LIFE

FRAN AND JIM

[patti]

Fran,

How can he tell Jim has leukemia without having seen a biopsy or his records? Going by someone’s blast percentage alone is not a good way to diagnose. My MIL has well over 30% blasts in her marrow but she is still not considered to have leukemia because she has no symptoms of leukemia. I think I’d be careful treating for something that Jim may not have. Just a thought.

Patti

[franm]

Patti:

The Dr. said that the Bone Marrow Biospy change in numbers and he said that 29 was concered Leukemia. The Jim’s Oncologist should be more aggresive with him and instead of lowering the Vidaza that she should keep the same as he was taking, which was 100mg everyday for 7 days. He will not start chemo until July 1st though. I think it is because the Onc. will be out of the country for 2 weeks this month. She will see Jim on the 30th of this month and then, will check his blood test..since he will be taking the BT every week.

Fran

[patti]

Hi Fran,

I understand that the doc is looking at 29% blasts and saying that is leukemia but if Jim does not have any symptoms of leukemia it would be odd to say that’s what he has. At least I know our doctors (all three of them at one time or another) have said that just because mom’s blasts are greater than 30% (that was two years ago – no one knows what they are now) that does not mean she has leukemia. That’s just something to keep in mind. Jim is in a weakened state and shooting him full of full dose chemo could produce results that neither of you want no matter how “light” Vidaza is supposed to be compared to Ara-C or others. It’s still chemo and it’s still on hard the body. I’d think you’d be much safer with his life by going slow and easy rather than pummeling him. That’s just a vantage point for you to take to his doctor and ask her to consider. IMHO

all the best,

patti

[franm]

Patti:

Jim takes a BT every Monday and he calls the hospital on Tuesday for the results. If his white count doesn’t go up, they might give him a transfusion. He seems to be tired most of the time.

The Onc. will not start any chem until July and we see her on the 30th of this month. Hope she has good news for Jim

Fran

[Dennis]

Update on Vidaza effectiveness —

Seems like its quit for me. After a long period of good counts, all my counts are in the red now. The doc has stopped the vidaza, and is doing a blood count every week for a while.

D

[franm]

Hi Dennis

Sorry to hear that Vidaza didn’t help you. You are way to young to have to worry about that but I guess it comes with the territory.

Jim takes a blood test every Monday and so far it is not to bad. His Onc. is away on vacation, so I guess when she comes back she will know that he had to go to the ER again. He developed a blood clot in his arm. They started him on Coumadin in the hospital and he enjects Lovenox in his stomach for 5 days 2 x a day.

Hope you start feeling better.

Don’t know if Jim will ever go into remissiion. I hope he does but only G-d knows.

Fran

[Engel]

Fran,
Don’t give up,Jim will go into remission sometimes it just takes longer. My husband Kornel dx in Jan. 06 MDS, went to AML in early May. He had chemo and we spend 5 weeks in the hospital, infections and heart problems. Had a BMB on June 21, and today June 23 received results, total remission. We are on cloud 9 and pray he stays in remission, we will do some vidaza for save measure, he takes only a 81mg. of asprin a day thats all. This whole illness has been a living nightmare. Our prayers are with you all. Gloria

[LuAnn]

Hi all,

My dad completed 3 6-week cycles of Vidaza and his quality of life really decreased in that time. His main issue is HGB counts and instead of increasing the amount of times between xfusions it decreased it and dad had to sometimes have 2 xfusion in a week following the series of 7 shots. Just as his HGB started to increase, he had to start another series of shots and the xfusions started again. He stated with 100% strength but the dr. reduced it to 75% when he was the count reaction to the shots. After the 3rd cycle the dr. decided this drug was not working and is not going to use it anymore. I was very happy about that. It took a while for the Vidaza to get out of his system but I believe it finally has left and now we are in the wait and see mode. Everyone reacts differently to these medications but I felt from the first series of shots there was no improvement. He has always been on procrit (18,000 units a week) and Neupogen (2 shots a week) and this continued thruout the Vidaza shots.

We are now looking into Revlimid however dad is not 5q. I’ve submitted a questionnaire for support to receive free based on compassionate care basis cause dad has no medicine coverage. As you all know the monthly cost is $7500 and the company is willing to charge 50% but that is still a significant expense. The company who also supplies his Exjade has informed him of a significant increase in the expense. Is it always about money??? This is very frustrating as I know you have all experienced. Hopefully we will be able to work out something and I asked the dr. to start looking into Decogen as an option.

Right now I’m just planning a few events for him to enjoy the summer and that is the main goal. I’m concerned that any new med will affect his quality of life again.

I guess I rambled a little bit more than I planned. Thanks all for listening and for always sharing your experiences.

[patti]

LuAnn,

Ramble on, dear. Sometimes it just helps to “talk” things out to clear the head. Sounds like you guys have been up and down a lot. Did your dad not sign up for the prescription drug coverage with medicare? Not that it’s that great but was wondering if it would help with the cost of what he needs. I think some of these drugs are still so new they may not even be covered yet by most plans.

Hang in there. It’s a long journey.

patti

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