Vidaza

[SusanJ]

Hello friends,

My dad is still agonizing over the decision on whether or not to try Vidaza. All of his counts are still very low. Since there is no “cure” for MDS, can anyone tell me what (if anything) is gained by the use of Vidaza? When my dad went for his Aranesp shot this morning, he asked the nurse what she thought about Vidaza. She told him that if he didn’t do something, that he would have to have blood transfusions for the rest of his life, and then sometime he would have to take medicine (?) because of too many blood transfusions. This is all so confusing to me, and much more confusing to my dad. Any advice would be greatly appreciated!

[Frankie]

Hi Susan…
I have been receiving blood transfusions for 12 years now.
In the last few years, I have been receivng blood every 14 days via a portacath implanted in my chest which makes everything so much more comfortable.
I also received weekly infusions of an iron chelator at home. This is to get rid of any iron storing in my heart and kidneys (from so many transfusions) and it is in IV form.
Now there is a new chelator taken orally…no IV infusion. It was just approved by the FDA called Exjade and I’ll be on that most likely.

Here’s the good news.
8 weeks ago I started Revlimid since I have the 5q deletion and haven’t had a blood transfusion since!!
Never give up hope.

My best to you and your dad,
Frankie

[Dennis]

Susan,

When I was first diagnosed with MDS, I was started on Vidaza. Got spectacular results, and have enjoyed nearly a year without a transfusion. When I started it my counts were very low.

Having a bit of a problem now with low counts again, but they are starting to inch up a bit.

Bottom line is give it a try. A friend of mine (amazing how many friends we find when we get this disease) was on vidaza for several cycles, now has a normal BMB (biopsy). No, there’s not a cure, but making your own blood cells certainly beats borrowing them from someone else, no offence meant to the wonderful people who give of themselves to donate blood. Also, transfusions do nothing for whites and platelets.

Vidaza is fairly easy to tolerate for most, but it can cause fatigue, soreness at the injection site, and other things. But it could help, too.

Dennis

[SusanJ]

Thanks Frankie & Dennis,

My dad’s doctor has told us that he didn’t think that Revlimid would help my dad because he has several other abnormal chromosomes beside the del 5q. We have gotten differing opinions from 2 hematologist/oncologists about the pros & cons of Vidaza. The most out-spoken doctor told us that he hasn’t had a very good success rate with Vidaza, especially in patients over 70. The other milder-mannered doctor has told us that if daddy doesn’t do something soon, he will be in trouble. He says that daddy will most likely have infections when he starts the Vidaza, because of the lowering of blood counts, but that he thinks he can get daddy through it. Daddy says that he feels okay, just gets really tired & winded when he does anything beside just sit, and the out-spoken doctor says why risk feeling worse after starting the Vidaza, in other words, if the disease isn’t curable and you feel okay now, why not just keep on the way things are now. He makes it sound like treatment with Vidaza is worse than the disease itself. The mild-mannered doctor is leaning more towards trying the Vidaza, but of course the ultimate decision is my dad’s. He is so confused. He wants to be able to do things again, he wants to be well. Dennis, I know that you’re 20 years younger than my dad, but did you get infections when you took Vidaza? Did your friend? Sorry I’m rambling on, I just need to gather all the information I can. I worry because his blood counts are already so low.

[JaniceR]

Susan: Does your dad feel any better after getting a transfusion? My dad feels like a million bucks after getting transfused. He’s on Dacogen now and it seems to be extending the time between transfusions and that was our hope. Of course, ideally, his bone marrow biopsy will come back clean… but we have to wait to see after he has four rounds of it… September. He only feels mildly not so good the week during and a couple days after his chemo. Then he’s good for three weeks. That’s all I can say. Good Luck to you and your dad. The wondering and worrying really sx.

[SusanJ]

Janice,

My dad doesn’t seem to perk up much after a transfusion. He has only had 2 so far. What is Dacogen?

[Dennis]

Susan,

To the best of my knowledge I haven’t had any infections (other than a bad tooth) since being dx’d with MDS. There was a fellow on this list who did get an infection right after starting Vidaza, but whether it was because of the vidaza or just a coincidence, I don’t know. No one I know of has reported treatment-related infections, although any time you break the skin, which needles do, there is always a risk. I have heard that the injections can bring on cellulitis, but again, never heard, saw, or experienced it.

While the Vidaza was at its best for me, life was pretty normal 3 weeks out of 4. During “chemo week”, I would be tired and sore. But it sure beat the options.

Treating the disease is tricky. Is it truely incurable? Given the state of what was known only a year ago, yes, outside of a BMT there was no known cure. But in the last two years, three drugs have come on the market to mitigate the symptoms of MDS. There isn’t enough long-term data on them yet. Most people who succumb to this disease do so not from MDS, but from the results of low blood counts, like infection or bleeding. So, control the counts, you control the disease — at least to some degree.

Eventually I’ll probably wind up with a transplant, maybe yet this year, who knows? But until such time, control is good, even if it comes at the cost of feeling a little poorly on occassion. There are risks involved with transfusions, and it is possible to get to a point where the transfusions don’t help much either.

D

[Neil]

Hi Susan,
Current stats indicate that about 18% of patients who try Vidaza will respond. Some have side effects in varying degres while some do not.
They find their counts begin to decline after starting and if they respond they will go up to a point higher than where they were before starting.
One of the unanswered questions for those who respond is for how long?
Would lean very heavily on the doc for as much info as you can glean out of him.
Dacogen is Decitabine, another drug recently approved for treating MDS. The stats indicate there is a higher response rate to it opposed to Vidaza. Again counts go down before going up. Decitabine has been used in Europe for several years. It is likely there are candidates who would have a better response rate, but have not been able to locate this info.

[Engel]

Neil,
You seem to be the most knowledgable person on this board. My husband was dx Jan.2006 with MDS and it quickly turned to AML in May he had chemo ara-C and complete remission. He is taking Vidaza for consolidation for a few months, 7 days on and 21 days off. My question is, our doctor told us good news no more AML and all chromosones are normal, but you need to be treated for MDS again his counts are pretty good and Vidaza did not take them down much. He is to old for a BMT what other options does he have? Thanks for being there for so many of us, we appreciate all you have to tell us, I check this board at least once a day. Thanks, Gloria

[Neil]

Hi Gloria,
You have a bit of a paradox. The docs can treat AML and get rid of it. The downside is the patient reverts back to MDS and they go thru the same old ritual fighting MDS.
There arent too many options. He can stay on Vidaza till it shows signs of becoming less effective. IF this happens he can go to Dacogen and see if it will pick up where the Vidaza left off.
The fact his counts are pretty good is a decided plus. They could very well stay there for some time.
SUZANNE do you have any thoughts? Think you have been down this road

[Suzanne]

Neil& Gloria, They told me that the reason they used in my case Zarnestra(a trial) after I went into a full remission for both AML and MDS was to try to encourage my body to kill off any hidden bad cells that might still be around & also to prevent anythat were there from cloning themselves. They used it to cover the period of time I statistically was most likely to relapse-(I was classified as high risk for that) So far there is no sign of either MDS or AML in my bone marrow, my chromosomes have remained normal and my counts are all withing normal range.I feel wonderfully normal! It has been 2 1/2 years since I went into remission and 1 1/2 since I finished the year of Zarnestra. I don’t take any meds now and the excess iron is slowly going down on its own. The medications they use work under several different theories of how to fight the disease. It looks to me like once I went into AML, they pretty much covered all types with my treatment to give me the best chance. The heavy chemo(three different drugs in my case) to kill everything and then Zarnestra is a farnesyltransferase Inhibitor-my memory is that the simple explanation was the hope that it would stop genetic signals sent out by any remaing bad cells. They of course have no way of knowing what I would have done without the Zarnestra but it was easy-pills-and had few side effects so I figured I couldn’t lose for trying. I went to a talk at Hopkins a few weeks ago on new directions in reasarch. My Docs are now working on the vaccine theory as well. I asked if I should do that too-mostly teasing since it is in the “pilot” (pre trial) stage. They answered that at this stage they want to leave”well enough alone” with me, that there is a chance my body is going to take care of whatever caused my problems on its own now. But they did promise to work extra hard on that vaccine just in case. In the meantime in two weeks I leave for Greece. A real celebration of good health and my first time on an airplane since I was diagnosed.

[sarah]

Suzanne, you are truly blessed. Continued good health to you and have a great time on your trip.

[maueenh]

Susan,

My dad just started his second round of Vidaza yesterday. A week after the first round his counts fell and he needed a tx of both red and platelets. He also received several injections of neupogen (for wbc) and procrit. His counts were up yesterday and he began the second round of Vidaza. He had an issue with constipation but otherwise feeling good. Our onc has had some positive results so feels that it’s worth a shot. Good luck.

Maureen

[SusanJ]

Maureen,

Thanks for the info. Please keep me posted. I will pray for your dad. And for you!

[dream]

Please be careful with this drug. My Mom was on Vidaza…she had 3 rounds of it and each time ended up in the hospital near death. The doc was adamant that it had nothing to do with the Vidaza. It wasn’t until the third time that he finally admitted it could be the problem. During Mom’s third hospital stay, my brother did some in-depth Internet searching and found that her problems (atrial fib, ARDS) were side effects of the drug in about 1% of people who were on it. By then it was too late though. It was obvious the doc did not do his research – and his sloppy medicine killed Mom in the end. So please, be sure you do your research on this drug and stay on top of your doctors.

[Author]

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