Vidaza - Opinions?

[Data]

I just got back from my appointment with my hematologist / oncologist. My last bone marrow biopsy showed I have a monosomy 7 in 6 of the 20 cells examined. She is talking about starting me on Vidaza. My blood counts are:
WBC=2.5
ANC=0.6
RBC=2.8
Hb=10.5
Platelets=28

I have read the clinical literature but I would like to know from folks who have been on this medicine their thoughts - both good and bad. Like success, side affects, etc. At the hospital where I go, I would have the injection every day of the week and then on Monday and Tuesday to complete the 7 day cycle.

Thanks for you thoughts and opinions in advance.

Data

[Annettec]

My 78 ear old mother has been in Vidaza for 16 months. It has kept her alive. She has MDS high risk. Very few side effects other than malaise ( and some itchy skin)for about 3 days. She still enjoys life and although her energy level is not what it used to be, she is content with being able to spend time with family and friends, have outings and keep up with her hobbies.
Not to say that this has been an easy time, but given the literature on VIdaza, we were pleasantly surprised with her tolerance for the treatment and the very few side effects. Last May, her oncologist advised us that it appeared that vIdaza was no longer effective so he was planning on putting a stop to the treatment and simply provide supportive care in the form of blood transfusions. ( at that point, she had only had one transfusion in the past year ). Her last treatment was to take place in July but they decided to continue as it looks like it's still helping .... She has had a few transfusions since July, but still not frequent ( relatively speaking of course...) one per 4-5 weeks so far.
She is seeing her oncologist again in October..hoping and praying that they're goign to continue with the treatment.......

Hope this helps. And I am going to keep you in my prayers. Ps. I met another elderly person with the same diagnosis as my mother and he was still doing well after 3+ years of being on Vidaza so that was encouraging. Lastly, according to all my research and my mother's oncologist, it appears there is a lot of research that confirms that 7 consecutive days is the best protocol. Thankfully, we were able to convince the local hospital to provide treatment on the weekend.... And we're in Eastern Canada....perhaps better to be in a small city where everyone knows your name
God bless,
Annette

[bailie]

As I have said previously, Vidaza has saved my life without changing my lifestyle at all. Often I will golf 18 holes during the week that I am getting the shots. I have been on the golf course a couple hours after the shots. I have had no side effects that are worth noting except some redness around where the shots are given.

I get my shots on seven consecutive days. Five days at my local cancer center and then on the weekend at the larger institution (Oregon Health Science University). The approval for Vidaza was predicated on the seven consecutive days.

When I started on Vidaza my counts were: WBC@4.7, RBC@3.75, platelets @48, HGB@12.6 and neutrophils@2.1.

[traceyn11]

Data - I had a terrible time on Vidaza. I only had 2 cycles because I ended up in the hospital after the 2nd one with diverticulitis, followed by several other hospital stays. It drove all my counts down - previously only my wbc and neutrophils had been low. However, it does seem to have driven my blasts from 14% to 10%.

If they give you Zofran or something else for nausea while taking Vidaza, watch out for constipation - I think that is what did me in. I also had a lot of pain and redness where they gave me the shots.

Hopefully your experience will be more like bailie's.

[Data]

Originally Posted by traceyn11

Data - I had a terrible time on Vidaza. I only had 2 cycles because I ended up in the hospital after the 2nd one with diverticulitis, followed by several other hospital stays. It drove all my counts down - previously only my wbc and neutrophils had been low. However, it does seem to have driven my blasts from 14% to 10%.

If they give you Zofran or something else for nausea while taking Vidaza, watch out for constipation - I think that is what did me in. I also had a lot of pain and redness where they gave me the shots.

Hopefully your experience will be more like bailie's.

Tracy,
Thanks for your honest opinion. That is exactly what I wanted - honesty. I think sometimes people only want to present the good side of treatments but I need to know the good and the bad.

Thanks again!!


Data

[traceyn11]

Originally Posted by Data

Tracy,
Thanks for your honest opinion. That is exactly what I wanted - honesty. I think sometimes people only want to present the good side of treatments but I need to know the good and the bad.

Thanks again!!


Data

Data, I don't know what kind of reactions you have to drugs, but I have allergies to Cipro, Sulfa drugs and Penicillin. The Penicillin is questionable because it happened when I was little and I don't even remember what kind of reaction I had. However, I had a bad reaction to one of the antifungal drugs they gave me recently too. So for me, it's not that unusual to have bad reactions to drugs, so I wasn't totally surprised at my reactions to the chemo or the Zofran.

[bailie]

Data, I don't understand your hesitation with Vidaza? If it works for you (it works for about 45 percent of people) your standard of living will improve. I have only had one transfusion in the last two years and that was from the transplant when my platelets "bottomed out" at eight which was expected. The Vidaza has kept my platelets close to 200 for almost all the time on Vidaza. The side effects are minimal. At a certain stage it is either Vidaza or not live any longer.

[Data]

Originally Posted by bailie

Data, I don't understand your hesitation with Vidaza? If it works for you (it works for about 45 percent of people) your standard of living will improve. I have only had one transfusion in the last two years and that was from the transplant when my platelets "bottomed out" at eight which was expected. The Vidaza has kept my platelets close to 200 for almost all the time on Vidaza. The side effects are minimal. At a certain stage it is either Vidaza or not live any longer.

Bailie,
I am hesitant because drugs affect different people in different ways - especially drugs like Vidaza. I am reluctant to do anything that will reduce my quality of life simply to increase the quantity of life.

I am happy for you that Vidaza has helped you.

Cheers

Data

[Cheryl C]

I understand your reluctance about chemo, Data. I feel the same about quality rather than quantity of life because even a lot of simple "everyday" drugs affect me adversely. This has driven me to search for natural alternatives which I use immediately when threatened with an infection. They are mostly effective and I don't need antibiotics anywhere near as often as I used to. This is how I cope with the low WCC. However your platelets are pretty low too - how does that affect you? How about the monosomy 7 - is 7 out of 20 at a dangerous level?

Should my quality of life decrease significantly I would consider chemo again, but I'm glad I didn't start Azacitidine (Vidaza) when it was first offered to me in early 2012. Only you can decide and I for one will totally respect your decision. The important thing is to be regularly monitoring your blood results. As Bailie has pointed out, feeling well is not necessarily an indicator of stable MDS.

[mitch]

From my personal experience, Vidaza worked well for me with minimal side effects. The problem was that it quit working after a little over a year. I was not on shots though - mine was delivered via IV (45 minute bag) for five days M-F, and then I had three weeks off. After two cycles it brought my Hgb, WBC, and platelet counts up into the normal range and kept them there for over a year. Was feeling good. I was on it for 19 cycles/months. But earlier this year my counts started dropping and in six months my Hgb fell from 15 into the 7's, and my platelets have fallen into the 40's. It was obvious that the Vidaza quit working. We are now looking into alternatives, including a BMT.

I only had two side effects to deal with, both minor: 1) I never really got nauseous because they gave me an anti-nausea medication called Aloxi in my IV before the Vidaza on Mondays, Wednesdays and Fridays during chemo week. That eliminated any nausea but it did cause constipation, which was easily handled with over-the-counter Miralax. I would start the Miralax the day before chemo week and continue it daily until the day after, and I never had any more problems. 2) My platelet count would drop during chemo week and the week after. But they would recover nicely on their own in weeks three and four....just in time for the next round.

Good luck to you. Many people have good luck with Vidaza with little side effects. I was one of them, for awhile anyway.

[bailie]

Mitch, I am curious why a stem cell transplant was not considered while you were at optimum levels in your blood counts? Was it because of low blast counts at the time?

I guess it could come down to different medical philosophies. My doctors knew that a stem cell transplant "was in the cards" for me when I was first diagnosed. We did Vidaza until counts were optimum and I was feeling good and then aggressively headed toward transplant. It was a very good call for me.

[mitch]

Bailie, a BMT was talked about early on but I think the reason it wasn't pursued was because I was in a lower risk MDS group - RCMD Intermediate 1. Although all three counts (Hgb, WBC, and platelets) were very low when I was diagnosed, my BMB showed low blasts (2%) and no chromosome problems. And since I responded so well to the Vidaza, they just kept me on it. It wasn't until my latest biopsy in July of this year that a Trisomy 21 problem was identified. They're now thinking this could be a sign I'm progressing to AML, and since the Vidaza quit too my options are limited. In the interim, I may be starting Revlimid too.

[bailie]

Mitch, I wish you the best. I thought it might be a low blast percentage in your early stages. In my situation my first blast counts were between 10-19 percent so I guess it was a "no-brainer" to start thinking about a transplant. Naturally like most of us, I had no idea about MDS. The only reason I knew about AML was that I had a friend diagnosed just two months before me.

The big question I have had was what are the options when Vidaza stops working. Revlimid did not cause me any side effects at all. The stem cell transplant was a very good option for me and I hope it will be for you. Keep in touch with us. Thank you.

[Martin G.]

My Dad is 80 and was diagnosed with AML in August. He went through two chemotherapies until December without any major problems. He did not even feel sick once. After those two chemotherapies, his platelet count was close to zero. So his doctor signed him up to participate in an international clinical study with oral Vidaza, double-blind. Neither his doctor nor he knew wether it was really oral Vidaza or just a placebo. My Dad started to take two tablets just before Christmas, every morning around 9.30 am. From the first day on, he knew it was no placebo, because five hours later, he started to feel really sick. Some days he even had to vomit. This happened every day for over a week. Then his doctor told him to interrupt the clinical study. After a break of three weeks, they now want to try again with just one tablet or a lower dose of oral Vidaza.
Has anybody of you experienced such a bad reaction to oral Vidaza?
Obviously it would be great to have Vidaza as a tablet at home, so you don't need to go to the hospital to get shots. But if it is so tough on my Dads stomach, I wonder whether it would be better for him to take Vidaza shots.

[bailie]

Does he have to take anti-nausea pills with the Vidaza? Generally people need to take the anti-nausea pills with Vidaza. I would think it would be no different with oral Vidaza.

[PaulS]

Hi - The trial, I believe, is to see if the oral Vidaza is as effective as injections - which would be great. I've heard it can be hard on the stomach and it isn't clear if the oral form is better for that reason, even if it works as well as the injectable - but the verdict is not in. If he really needs it and is having a bad reaction to the oral, then he may want to try the injectable.

Good luck
Paul

[Martin G.]

Yes, my Dad also took some anti-nausea medicine with the oral Vidaza, but it did not help. He still would like to try one more time to participate in the clinical study. If that does not work either, he might switch to Vidaza injections and try out whether that works better for him.