Vidaza or Dacogen?
 

From what I have been able to gather, it appears that Vidaza is generally the first drug that is tried - particularly with RAEB 2. My husband was scheduled to start conditioning treatment last year (in prep for a SCT) prior to some other serious health issues. The SCT was cancelled and treatment never started. In reviewing his declining numbers I would be surprised if they don't start treatment in the next couple weeks. I looked at my notes from last year and his doc had suggested starting him on Dacogen vs. Vidaza. In the meantime my (limited) research shows that Vidaza seems to be the drug of choice. Is it the mutations, patient's age, anticipated course of treatment, or merely the doc's choice that dictates what drug will be tried first?

Good question Sue. My research has definitely shown a preference for Vidaza firstly if co-morbidities and blood counts are fine. I think, from personal experience with other patients, that Dacogen is sometimes used when there is some questions about the health of the patient. This is just an inference on my part and may or may not be correct.

Re: Vidaza or Dacogen?
 

I was given Dacogen or Decitabine in prep for SCT. After 3 rounds my blood counts have normalized. I have had no side effects at all. They had planned on doing the SCT after 4 rounds but since my counts have normalized I'm in no hurry. Starting the 4th round this week. I have to ask my SCT doctor his thoughts about continuing beyond 4 rounds.

Rich, your situation is very interesting for me because of similarities to my situation before SCT. My numbers progressed significantly after three cycles of Vidaza. We continued until the eight cycle because I was feeling so well. The doctors always told me that I would be having a SCT in the future and we would want to have it at the optimum time. After eight months I was still walking/golfing our 6 mile hilly golf course and feeling no side effects from the Vidaza. Then came the decision of having the SCT. The toughest part of the decision was that I was feeling so good why go through with the SCT. Looking back, it was the only decision I had that might work. I was quickly going downhill when I was diagnosed even though I felt fine. I feel strongly that if a SCT is in a person's future it is extremely beneficial to have it while feeling as healthy as possible. The good thing about having the SCT while feeling healthy is that you have more choices about the logistics of the procedure. Your timetable/lodging/transportation/care is more flexible. I wish you the best in your decision.

Thanks
I do want the SCT but I don't like the odds. More or less a coin flip live or die within a year. They are searching for a unrelated donor now. 2 of my brothers were tested but they were not close enough.One was 2 of 6 the other was 4 of 6.

Rich, there isn't a big problem with an unrelated donor. My donor was a 20 year-old male from Germany. A young donor definitely has advantages. Remember also the statistics have much to do with the physical condition of the patient when having a SCT. The stats include those who are in very serious condition before transplant which limits successful possibilities and outcomes.

Hi Rich,

I will respectfully issue a counter-argument to bailie.

I think your point warrants discussion with your doctor and maybe even a second opinion from another transplant specialist. Some people can get 2+ good years while on Vidaza. In 2+ years, there could be a major advancement in targeted gene therapies and/or transplant regimens. With a SCT, there are no guarantees.

Do you have any cytogenetic abnormalities? Have you been tested for the newer genetic mutations (like RUNX1) that point to the more immediate need to go to transplant? Knowing that could make your decision easier.

I hope you are one of the lucky ones on whichever path you choose!

Hopeful, I find your comment about the 2+ years very interesting. As a matter of fact when my husband was first diagnosed and we were initially working with the amazing people at MD Anderson, we asked his doc what kind of timeline to expect. He of course couldn't tell us but using the IPSS calculator gave him 3-5 years. I told him that was fine, and in those 3-5 years I fully expected him and his team to come up with a cure!

From a pure numbers perspective, the survival information on when to get a transplant indicate that statistically, survival is maximized by waiting until progression, typically from an RAEB -1 to RAEB -2 under the old system. There are many reasons for this, including Bailie's observation about feeling good enough to get a transplant, and also the risk/reward crossover at that point. In my case, I was diagnosed in 2010, started progressing in November 2013, and was transplanted in February 2014. I was still relatively healthy, but was certainly going in the wrong direction suddenly.

To Hopeful's point, waiting does have certain other benefits, such as the possibility of improved technology, more data on how to treat complications, time to find better donors, etc. Also, each transplant team's experience increases and the ability of the team to improve outcomes gets better.

Just some thoughts.

SCT
 

It is such a tough call. GVHD disease is not a joke. My hemotologist told me he would never do a SCT. 4 of his patients are way worse off than before the treatment. He feels so bad for them.

I find that an amazing (bordering on irresponsible) statement, "My hemotologist told me he would never do a SCT". I would have died two years, perhaps three, ago without a SCT. Naturally, everyone is different with GVHD but I have had no GVHD problems other than a skin rash that I could hardly notice. My choice was simple, "did I want to live or die". There are some cases of MDS that can be strung out for years, but many cases need immediate attention with a very short prognosis.

Thanks to all for your input.

I have decided to continue with chemo (Dacogen)as it put my blast count to 3% from 11% after 5 months.(is 3% blasts considered remission.)

With SCT my doctor says survival rate for 1 year is 45%. Thats 5% closer to human sacrifice than a medical procedure.

I can't find data that suggests getting SCT early is beneficial.

Hi Rich. You are right to be cautious about a transplant. It is a high risk procedure and in my opinion, should only be undertaken if, as in Bailie's prior situation, you run out of other effective options.