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  #1  
Old Thu Jul 7, 2016, 08:41 AM
PaulS PaulS is offline
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Troubling Biopsy

Hi -
I just go back some results from my 9 month post transplant BMB. They detected abnormal myeloid blasts in .09% of the WBC - similar to but not identical to those seen in my MDS... I also went from 100% donor to 90% donor. My doctors were encouraging, saying the results are inconclusive and happens sometimes and then goes away... but are checking to see if my donor is available for lymphocytes just in case. They also lowered my tacrolimus a bit. I have another BMB scheduled at the end of July and am hoping everything looks Ok -

My blood counts aren't quite normal but have been holding steady or going up.

When others relapsed how did it first manifest? Anyone else have blips in their BMB's that went away?

Thanks
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #2  
Old Thu Jul 7, 2016, 06:05 PM
bailie bailie is offline
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OK Paul, we are with you on this one. Naturally it is hard for us to give you accurate thoughts. When I relapsed to AML at about Day +210 my chimerism dropped to 85% after being at 100% from 30 days following transplant. We had a similar choice as you. Firstly have another BMB and then either a DLI or rounds of Vidaza. We decided firstly for the Vidaza and that worked after 3 cycles with each cycle getting better. The unique part of my relapse was that there wasn't any trace of my previously to transplant genetic mutations. It has now been 1 1/4 years since the relapse and I am feeling fine. The doctors stopped my tacrolimus completely when I showed signs of relapse.

We are in this with you so keep us posted and we will help in any way we can.
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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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Old Thu Jul 7, 2016, 06:10 PM
DanL DanL is offline
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Paul,

when I relapsed, the report said that all cells appeared normal, but I had 1 of the cells analyzed with multiple cytogenetic abnormalities - i think 4. I went through 6 cycles of vidaza and 6 cycles of rituxan simultaneously. I am about 1.5 years out since ending the vidaza and have almost normal counts. When I was relapsing, my counts were low across the board and i had gvhd pretty bad.

Some of the others that I have seen relapse experienced a slow relapse and others had sudden blast crisis, so I think it is hard to say. With the small % of abnormal cells you have, I would hope that it is more of a blip or something that is readily treatable. In my case, i was still 100% donor cells, so that may be a difference of importance.

Dan
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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 Thu Jul 7, 2016, 07:40 PM
PaulS PaulS is offline
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Thanks for the support - My doctors are telling me the results are not definitive of anything at this point - so I'm trying to stay positive and hoping things look better next BMB - I'm trying not to think about the what ifs - AZA didn't work so I have concerns about that - and lymphocytes sounds very unpleasant for uncertain results - but maybe they will have other options if it comes to that. My cytogenetics were good and the morphology didn't show MDS - the bad results were in the flow cytometry test - and mostly just the .09% bad cells. I don't think anything else was especially bad or definitive - but its getting hard to follow the technical details - the implication of how cells react to certain stains is over my head...

I'll let you know what happens...
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Thu Jul 7, 2016, 10:07 PM
KatailS KatailS is offline
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Hi Paul
I have no experience to offer but will keep you in my thoughts. Keep thinking positively
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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  #6  
Old Fri Jul 8, 2016, 05:32 AM
DanL DanL is offline
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Paul,

When you say that the vidaza didn't work, are you referring to pre-transplant? There is not a whole lot of research that has been published on relapse and the use of vidaza, especially in early relapse as opposed to full blast crisis. Here are some possible reasons to consider it if your doctor sees the need for treatment...a transplant replaces your marrow with somebody else's - meaning that it may respond differently, the nature of a relapse may be different than the original disease, and lastly, it is possible that all your new marrow needs is a booster shot, or additional support to knock out any bad cells.

In my case, i had 2 or 3 cycles of vidaza pre-transplant and i did not really see any positive results, just rapidly dropping blood counts and increasing blasts. Post transplant, I had 6 cycles of treatment with vidaza, and saw my platelets increase in the first cycle, with whites and reds following, so the response was 180 degrees from the first time around.

Hopefully as you and your doctor noted, it is just a blip and does not require anything more than patience.
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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 Fri Jul 8, 2016, 07:34 AM
PaulS PaulS is offline
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Thanks Katail - I really appreciate your good thoughts and support.

Hi Dan - I meant pre-transplant Vidaza - I understand the theory that Vidaza may work differently with the new marrow but I've been skeptical since it seemed like it would need to work on any residual marrow and not the healthy new stuff- your results are encouraging. We had talked about using it as a maintenance treatment but my platelets were always low and things were looking good so we ruled it out - but that was before the biopsy.

Did they start treating you based on the one bad cell or did other symptoms/signs also show up?

My hematologist says she sees this type of fluctuation "all the time" and it doesn't necessarily mean anything - but I'm not sure if she's just trying to make me feel better. I guess things were going too smoothly.

I had started getting back into the swing of a somewhat normal life - getting aggravated about work stuff etc - the biopsy puts things back into perspective and helps re-focus me on whats really important. A wake up call of sorts - a warning against complacency.

Thanks again for your support and insights.
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Sat Jul 9, 2016, 12:47 AM
DanL DanL is offline
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It was the combination of a bad cell, pancytopenia, and gvhd that drove the treatment decision. The biopsy put the decision firmly into lets take some action now. I was skeptical at first, but after just the first cycle, I felt like it was the right decision, but hard to say overall why everything changed so quickly for the better.
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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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  #9  
Old Sat Jul 9, 2016, 10:31 AM
PaulS PaulS is offline
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Hi Dan - they gave me Rituxin when I had GVHD (skin rash pretty much everywhere) - at the time my counts were also low - the Rituxin cleared up the GVHD and my counts started rising - sounds very similar to your experience, minus the Vidaza - I also had some significant mylelofibrosis.

Were you always 100% donor? It worries me that I went down from 100% to 90%. I won't be surprised if they want to give me Vidaza regardless of the next BMB... I'm encouraged by how well your doing!

Best,
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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