vidaza success–how to count months?

[Carruth]

I couldn’t find this particular question in a search of the topics. If it has already been covered, please forgive.

When someone says vidaza “worked for ten months”, does that mean from the time vidaza was started, or from the time it began to work? Are all the treatment months included?

My mil has had four treatments, so if she shows a reponse soon and has five more treaments, do we say vidaza worked for nine months?

Months don’t usually mean this much, but in our situations, they mean a lot!

[eve]

my dad was on vidaza for years

eve

[bobweinberg]

I took Vidaza for three months with no effect, then was tx free for 20 weeks, then needed a tx after a 6 week interval, then a 4 week interval, then back to 12-14 days, which has been the case since. So for me, I would say Vidaza worked for 30 weeks, or 7.5 months – during the period in which I was tx-free and in which txs were separated by more than 14 days.

My question is, “What’s next?”

[Jack_dup1]

How long the drug has worked is a matter of opinion. I like to think the dacagon starts doing its thing the day it goes in, the “seed has to be planted” and thing, don’t work instantly, but something is happening. We may not see results right away, but the time should be counted. I figure from day one the body is being affected in some minor way, even if we feel nothing. The body may be fighting the drug, which can cause setbacks, but it is fighting back and should get some credit.
Jack S.

[Carruth]

Jack, that’s a great way to look at it. Thanks for your perspective. I think there’s a lot of wisdom in what you’ve said.

I have been researching results from vidaza and wasn’t sure how others counted. If I read that vidaza “worked” for Sally Sue for fourteen months, does that mean from the time she began it, or from the time she saw results? That’s what I meant with my question. Especially given that we haven’t really seen any results yet for my mil and it’s been over four months. Her transfusions have not gotten farther apart–in fact they’ve gotten closer together. Add that in with all the fevers, infections, etc. The scary part to me was that I’ve read many people’s experiences who said it worked for a short period of time like six, eight, or ten months. So if that will be the case for my mil, do we count these past four months? Which would mean half the time is gone already? I hope not! Does any of this make any since?

Sorry if I’m being repetitive. I am constantly trying to make sense of all of this, and I guess it isn’t possible. We just have to take each day and count it a blessing. My mil has started to eat a little better in the last few days. Hopefully that is an indication things are getting better.

Thanks to everyone for your patience.

Stacey Carruth

[jaxem]

stacey
you need at least 4 rounds (preferably 6) before it starts to work. AFTER this time, you should start to see recovery. don’t forget, vidaza annihilates blood cells, good & bad. I would expect to see her counts down whenever taking the drug with the nasty side effects like fevers, infections, etc. as each round is taken, I would expect it to take a longer time for the marrow to recover.

[Jack_dup1]

I’m confused. Does it takes six cycles to work, or 6 cycles to see results from what the drug has been doing since you started putting in your body for six months ago. Were the first 5 months a waste since it didn’t help.
Just curious
Jack S.

[sdrake]

In my dad’s case there were positive results after the first round of Vidaza. His spleen started shrinking and his HGB increased. Within the first couple of rounds Dad’s spleen was normal-sized again. His HGB ranged from 10.5-12.5. Dad had CMML which causes a high wbc. The Vidaza controlled that for 2 1/2 years. We felt very fortunate that he had such a good response with it.

Shari

[Carruth]

Blood counts today–fourth round of vidaza was June 16-20. She did miss one day of chemo because of fever, and the dosage was reduced from 150 to 125 and was six weeks apart form the third round. Anyway, rbc-10.2, wbc 1.0, and platelets 6. She had blood and platelets nine days ago. She is eating a little better, but not much, and still has no energy whatsoever. She can only sit up for a little while then has to get back in bed. She’ll see the doctor Friday to determine if she does chemo next week or waits another week or two.

The nurse manager on the oncology wing told me she probably won’t get any stronger. Just when she might begin to feel better, it’ll be time for chemo again. I suppose the nurse was speaking from experience. And my mil is very frail and weak anyway.

Has anyone had long-term success with vidaza who had relapsed aml? I keep finding people who have had cmml or mds.

Jack, I understand your confusion. I feel the same way usually. But I have read of many people who saw immediate improvement in their counts. Some were as soon as after the first treatment as in Shari’s dad’s case. The statistics show that 90% of people who have a positive response will have it within four to six months. So it can take five or six rounds, but doesn’t have to necessarily.

Shari, did your dad have any side effects from the vidaza? How did he feel?

Thanks,
Stacey Carruth

[sdrake]

Stacey,

Dad really had very few side effects to speak of. His arms got sore from the shots, and he had some constipation, but that is about all. He was able to maintain a pretty normal lifestyle while the Vidaza worked.

Shari

[Harold P]

My husband was diagnosed in 2/08 with MDS RARS INT-1 secondary because of chemo treatments he had in 1998 for Non Hodgkin’s Lymphoma. He has multiple chromosome damage including monosomy 7. We have seen 2 oncologist/hematologists, 1 MDS specialist, & 2 transplant doctors. After talking with the MDS specialist my husband, Pete, decided to try Vidaza. We were aware of the fact that your counts would go down after the treatment. Sure enough it did. Pete ended up in the hospital & had to have 2 pints of blood. We discussed the Vidaza treatment with Pete’s hematologist/oncologist he sees off & on at the Mayo Clinic. This Dr. thought my husband should do the wait & watch since Pete had been feeling so good & his counts were pretty decent before the Vidaza treatment. After a lot of thought Pete decided to stop any further treatments of Vidaza at this time. He said maybe later on down the line he would start the treatments again. Ever since his counts have been improving.

6/3/08:
WBC 7.44, Neutrophils 5.15, RBC 4.59, HGB 13.8, Plt 260
7/8/08:
WBC 4.42, Neutrophils 4.94, RBC 4.42, HGB 14.6, Plt 204

So you can see that his counts are continuing to get better. He feels great. Pete’s doctor here in Des Moines & the transplant Dr. at the Univ of MN think that the one Vidaza treatment is why his counts are doing so well. We don’t know what to think. Pete hasn’t had a BMB since 1/28/08, so we don’t know if there has been any change in his chromosome damage. His Dr. doesn’t want to do a BMB yet. She wants to wait & watch. She is very happy with his counts.
We are hoping & praying that something miraculous has happened due to the Vidaza treatment. If he can do this well after only 1 treatment then hopefully this will mean that the Vidaza treatments can be spread out indefinitely. I don’t think any of the doctors know for sure. We are very thankful for this wonderful news & pray that it continues. We will keep you all posted.

We continue to pray for all MDS patients & their families.

Regards,
Pete & Sandy Peterson

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