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Old Wed Sep 17, 2014, 04:20 PM
DanL DanL is offline
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Vidaza post-transplant

I thought that I would start a new thread on my post-transplant experience due to the recent discovery of chromosomal abnormalities in my last bone marrow biopsy at the beginning of August. My doctor said that based on chromosomal changes in one of the cells analyzed from my last biopsy that he would classify my condition as relapsed MDS. Blast cells were 1% in the marrow, 0% in the peripheral, there wasn't any dysplasia to speak of in any of the cell lines, and I had 100% donor chimerism in both the marrow and peripheral blood.

I have had grade 1-2 GVHD of the gut, mouth, skin, and eyes and was experiencing week after week declines in platelets and hgb, but it was a slow, steady decline. We tried steroids for a few weeks, which did create a small boost in platelets and hgb, but not with the kind of trajectory expected.

In the middle of August, I completed cycle 1 of Vidaza, just started cycle 2 this week. The first cycle knocked down my counts pretty hard, especially the whites. I went from HGB 10.6 to 8.7, WBC 6.3 to .4, and Platelets 53k to 29k. At the start of cycle 2, I am at HGB 11.6, WBC 2.0, platelets 115k. It looks like a pretty good start.

To handle some of the GVHD issues, I have been weaning off of prednisone - down to 10mg per day, and started photopheresis twice per week for the next several weeks. I go for my 3rd and 4th treatment this week.
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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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Old Wed Sep 17, 2014, 04:52 PM
amyangel amyangel is offline
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Wow Dan sounds lots like my daughter when she start Vidaza we only did 4 cycles and she has MDS with dysplasia and fibrosis the Vidaza helped make clean soil for her baby cells to grow again .
Her counts for WBC and ANC were already 0 and her platelets were 89 and her Hemoglobin was in the 7 so when they gave her , her 1st cycle it didn't take much to drop ... and that's when we started to see her counts start to come back ....

I wish you the best Dan Prayers always
Sue
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Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #3  
Old Wed Sep 17, 2014, 04:59 PM
sbk007 sbk007 is offline
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Hi Dan, Hope your feeling o.k. It does sound like you responded well to your first cycle and I would expect that to continue. Your WBC did get whacked pretty good but that's the price of Vidaza. After cycle 1 my WBC got hammered from 5 to 2.5 so we waited an extra week before cycle 2 and all my counts came up. Dave/David/Whizbang had a similar experience with Dacogen.
I hope the Vidaza cleans out your marrow and fixes the chromosomes.
How long will you be on Vidaza? If they re-classified as relapsed MDS what does that mean going forward? I guess what I'm asking is if the Vidaza can fix it permanently. No one likes to hear the word relapse..I'm hoping its reversible. You are a trooper and I hope everything works out for you.
All the best, Steve
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Old Wed Sep 17, 2014, 06:01 PM
DanL DanL is offline
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Steve,

I am feeling pretty good overall. I was a little on the weak side for a few days, but not much to complain about, still able to do most of my activities, just a little more nap time.

Based on the cell level analysis, it looked like about 1 out of 21 cells reviewed had the chromosome changes - several trisomies -

My doctor's experience with Vidaza post-transplant is pretty positive and he suggested that because of the graft versus mds effect of the donor's marrow that Vidaza may be used to promote better functioning of the immune system to eradicate the remaining MDS, so it could represent a cure, unlike pre-transplant Vidaza.

As for what's ahead, we still need to fight off the GVHD that I am experiencing, and supposedly Vidaza can help with that as well. We have discussed 4 to 6 cycles initially, but I am prepared for longer as needed. I suspect a bone marrow biopsy is probably going to be ordered for mid-October just before cycle 3 just to see where we stand.

DLI and transplant seem like next steps if the MDS clones grow, but the doctor was reluctant to go there just yet in the absence of overt dysplasia and elevated blasts.

At this time, I am very optimistic, am getting stronger, and have put back on 30 pounds since transplant, so I am about back to my pre-transplant weight - probably thanks to steroids, but I will take it.
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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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Old Wed Sep 17, 2014, 06:25 PM
sbk007 sbk007 is offline
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Sounds very positive Dan and makes a lot sense. The GVHD could be beneficial in eating up the bad cells in concert with Vidaza doing its thing.
Great to hear you're feeling good. Congrats on the 30 pounds. There are people (Like myself) that would beg for the opportunity to do that
Stay Well, Steve
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  #6  
Old Thu Sep 18, 2014, 11:26 AM
katgio50 katgio50 is offline
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Thanks Dan for starting this thread as it really pertains to where we are at this time too. My husband is currently getting his third Vidaza cycle following a relapse in July. However, his numbers have not rebounded like yours and so we do not know if it is working or not. He just had a flare up of cgvhd of the skin, so we are hoping that means there is still some anti-leukemic effect going on. Please keep posting .
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Old Thu Sep 18, 2014, 08:26 PM
bailie bailie is offline
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Thank you Dan. I have discussed the use of Vidaza several times with my doctor for post transplant. I am Day 35 and feeling fine but I am fully aware that the future could be difficult. Just had a 30 day BMB and will not have the chromosomal results for a couple of weeks. We have discussed the Vidaza as a preventative treatment and as a reactionary treatment. I did respond to the pre-transplant Vidaza. It will be interesting to see what they decide.

I wish you the best and thank you for your comments.
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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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