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  #1  
Old Thu Jan 5, 2017, 08:36 AM
Sue&Dave Sue&Dave is offline
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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?
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  #2  
Old Thu Jan 5, 2017, 09:29 AM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Tue Jan 10, 2017, 06:27 AM
rich rich is offline
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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.
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  #4  
Old Tue Jan 10, 2017, 09:04 AM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #5  
Old Wed Jan 11, 2017, 11:47 AM
rich rich is offline
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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.
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Male 64 years old. Diagnosed MDS with 11% blasts in August 2016. Blood counts have normalized after 3 rounds of (Dacogen or Decitabine) Currently on Month 24 of Dacogen. Waiting for Decitabine to fail before doing SCT.
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  #6  
Old Wed Jan 11, 2017, 12:04 PM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #7  
Old Wed Jan 11, 2017, 10:37 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by rich View Post
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.
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!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #8  
Old Thu Jan 12, 2017, 07:10 AM
Sue&Dave Sue&Dave is offline
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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!
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  #9  
Old Thu Jan 12, 2017, 01:08 PM
DanL DanL is offline
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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.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #10  
Old Sat Jan 14, 2017, 06:47 PM
medicalenigma medicalenigma is offline
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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.

Quote:
Originally Posted by rich View Post
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.
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  #11  
Old Sat Jan 14, 2017, 07:44 PM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #12  
Old Sun Apr 2, 2017, 08:38 PM
rich rich is offline
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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.
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  #13  
Old Tue Apr 4, 2017, 01:27 AM
Cheryl C Cheryl C is offline
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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.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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