Remission and VIDAZA

[JulesH]

Hello Everyone,

I am in a dilema. I am scheduled for a BMB on Wedneday, Oct 19 at Moffitt Cancer Center. They
want to confirm that I am in remission.

If I am in remission the Moffitt Cancer Center wants to take me off of VIDAZA. My local oncologist says he wants me to remain on VIDAZA because he feels there will be a relapse in a very short time.

I am considered to have a complete response from VIDAZA because all my bloodwork numbers get better with each VIDAZA cycle. I am at or near normal ranges for HGB, Platelets, WBC, etc with no blasts in my blood in the past month.

I read that the 5% of VIDAZA users in the test studies had a complete response and their median remission time was 14 mos. after VIDAZA was discontinued.

I assume that since VIDAZA is so new that some of these people are still in remission and I would appreciate any details of remission lengths that any of you know of.

I want to know what I might expect if I choose to get off of VIDAZA.

[Terri]

Hi First time around my husband did 6 rounds for Vidaza, Blast got normal and most counts except the plts were norm for about 7 months. Then the blast elevated again to 14% so the doctor put BOb back on the vidaza. After about 8treatments again his counts stablized and blast reduced so instead of stopping it he spread it out from every 4 weeks to every 6 weeks. Now his whites are increasing as they have in the past each time he goes off the vidaza, so doc did a bmb to see what is going on and maybe put him back on teh 4 week schedule. He is afraid if he takes him off, there is so little info on ths drug the next time he may not respond to it.

Good luck

[Sandy L]

Mike’s numbers goes down when he gets the Vidaza. Only when the four weeks are over does his numbers start creeping up. He has had 2 days worth of shots and his hmg went from 10.7 to 8.2 wbc 2.9 to 1.4 plt 38 to 43 He is getting Procrit 1 x a week and they discontinued neuprogen till after the vidaza ( doc feels it does not work while you get the vidaza shots)

I thought the only way of seeing if it is working is thru a BMB. Is the increase in the counts also an indication?

Good luck Jules – Are you seeing a Dr Anasetti there? I understand he relocated there from Seattle. If you are in remission then are you a candidate for a MUD ? I am curious what the doctor will say when you ask him if stopping the Vidaza is a good choice at this time. You could also watch it like Terri and Bob and if you see a change in a month or two then restart it.

Hi Terri

Hope Bob is doing well. I have had lots of company so when things quiet down I will call and we can chat.

I did not post for a few days. I found it hard to after reading about Marie’s loss. I hope that you ae doing okay Marie and find some peace within yourself.

[JulesH]

Sandy L & Terri,

Thanks for the response. I don’t know a Dr. Anasetti. At Moffitt I have seen 4 or more doctors over the last 2 years.

I am currently on a 6 week cycle with VIDAZA.
During a cycle my HGB will hit a low about 10.2, platelets a low of 120 and my WBC ranges from 6 to 14. 18 months ago my platelets were in the 20 to 50 range, I could not maintain an HGB level
above 7 without tranfusions every week and my WBC was hovering around 100.

Now it’s only VIDAZA and no transfusions for 10 mos.

[Sandy L]

We went to Miffit and March 2004. We had an appointment with Dr Saba but we spent most of the time with his Fellow. Dr Anasetti just transfered there from Hutch. Dr Lisct is also from there and has been published. What doctors have you seen and are you pleased?

[JulesH]

Sandy L

I’ve seen Saba about 4 times, but Dr. List recomended that I be put on VIDAZA and the doctors I see now work in his office.

[Dennis]

The numbers at my last 3 CBC’s have been going up. Hemo has stayed at 10.6 for 2 weeks, even through a round of Vidaza. My next CBC is Nov. 8th, it’ll be interesting to see what it is.

I’ve had 3 rounds of Vidaza. Currently looking for a donor for BMT. I wouldn’t miss it if they decided to hold off on a round of Vidaza. Still sore from the one finished last week.

Dennis

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