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  #1  
Old Sat Oct 29, 2016, 10:41 AM
Data Data is offline
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Question Boost for low blood counts

I had my stem cell transplant in April of this year (2016). Things were going fairly well for a while – just a moderate amount of GVHD (mostly skin, upper GI tract, mouth) and a couple instances of viruses – CMV and BK. In August my WBC count started to decline and in October my RBC count and platelets followed suit. At my last visit my counts were WBC=1.0, RBC=2.93, and platelets were 4. I have been getting platelets every two or three days and when I go back, they are down in in the single digit range.

My doc has mentioned doing what he terms a “boost” – an infusion of stems cells from my original donor. He seems reluctant to do it because he says he will have to get me off of prednisone completely and the boost may trigger more serious GVHD than I have had in the past.

My last biopsy show “markedly reduced” cellularity – 10 to 15% but no cytogenetic abnormalities. The biopsy was done when my platelets first went to 4. A biopsy done at day 100 showed a cellularity of 25 to 30%

My question is has anyone had a procedure similar to the “boost”? Also has anyone had a problem where all your blood counts start to decline around 6 months from the your transplant?

Thanks for any opinions or insight.

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #2  
Old Sat Oct 29, 2016, 11:51 AM
bailie bailie is offline
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At Day+210 my WBC was at 1.13, RBC at 2.91, platelets at 25 and neutrophils at 0.22. Blasts were at 33 percent. They started Vidaza immediately and my counts started going up quickly. It was the choice of Vidaza and not having a GVHD effect or a DLI with possible additional GVHD.

I wish you the best. It is a difficult decision. If doing the Vidaza they would need to boost your platelets to the 20-30 range and start with perhaps a half dose of the Vidaza. It is a tough call for the doctors.
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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 Sat Oct 29, 2016, 08:31 PM
Data Data is offline
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Boost vs DLI

Baille,
Thanks for the reply. When I talked to my doc about the "boost" he specifically said the cells would be stem cells - the same as what I got in the original transplant. I asked about DLI and he said a DLI is infusion of lymphocytes that have been extracted from the donor's blood and is used when you have reoccurrence of the disease and this was not what he was contemplating for me. My previous doctor had mentioned Vidaza but that was when I was Intermediate risk and wasn't planning on a SCT. Things went downhill fast with an increasing percent of Monosomy 7 abnormalities.

Thanks again,

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #4  
Old Sat Oct 29, 2016, 10:55 PM
Cheryl C Cheryl C is online now
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I'm really sorry to read that you're facing some issues at the 6 month point, Data. My thoughts and prayers are with you as you make decisions about what to do next.

While you're deciding, if you have no objection to natural immune boosters, you could try taking Olive Leaf Extract (get the best you can find) and Vitamin D3. Here in Australia I buy Comvita MediOlive 66 (http://olea.com.au/benefits/). Of course these will not cure, but may help you feel better and to cope with vulnerability to infections.

All the best ... I'll be watching for your posts.
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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. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #5  
Old Sat Oct 29, 2016, 11:10 PM
PaulS PaulS is offline
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Hi Data. Does your marrow have any increased blasts? Are you 100 %donor or is the chimerism changed? Any increase in dysplastic cells? When I started relapsing they took me off drugs to prevent Gvhd thinking some Gvhd is good and may help fight off a relapse. We didn't have any stem cells in the freezer so a boost wasn't an option. Of course my experience didn't salvage the transplant. I'm not sure the is enough info to know if the transplant is failing. I have a transplant friend who's numbers also tanked. He ended up getting spleen removed which was complicated but resolved everything. He's now 2.5 years out and feeling great. Have they looked at spleen?
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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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  #6  
Old Sun Oct 30, 2016, 10:29 AM
Data Data is offline
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Cheryl.
Thanks for the reply and suggestions. The engineer in me has always made me shy away from stuff that isn't proven. I am sure it helps a great number of people but I like to stick with drugs that have gone through rigorous testing and have been proven to be beneficial. Thanks for the suggestions though.

Paul,
A couple lines out of my biopsy were:
“Hypocellular marrow (10 - 15%) with trilineage hematopoiesis , relative Erythroid hyperplasia with dyspoiesis , and decreased megakaryocytes.”

“Bone marrow is now markedly hypocellular (10 - 15%) with rare megakaryocytes and some dyspoietic changes noted in the erythroids along with mild erythroid hyperplasia, along with damage appearance”

Chimerism was at 100% donor the day of the biopsy.

The doc has never mentioned the spleen. I have heard of the spleen sequestering platelets but would that cause the WBC and RBC counts to tank also?

There was no increase in blast (1%)

The doc specifically said it wasn't a transplant failure but could be a graft failure - all be it a late one.

Thanks again for the comments & concern

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #7  
Old Sun Oct 30, 2016, 11:36 PM
lisa3112 lisa3112 is offline
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Hi data,
I had my transplant in March. I also had minor gvhd. My dr did mention giving me more donor white cells... but only because I had traces of a mutation (runx1). The mutation was gone at last biopsy (yay!). So he hasn't mentioned more cells again.
However, my counts havnt been that stable. Last bloods platlets 84, neutrophils 1.0, hb 121. They think this is because I've been getting every virus my 19month old has been getting. Also issues with reacurring cmv.
Good luck with everything. My dr did say it is fairly common to receive more cells.
Lisa
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #8  
Old Mon Oct 31, 2016, 02:26 AM
Hopeful Hopeful is offline
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Data,

I am really sorry to hear about this turn of events.

If I were to take your biopsy lines out of context (meaning that I didn't know anything about you), they would read like someone who had Aplastic Anemia.

Given that you were fighting some big viruses post-transplant with a very immature immune system, I wonder if your immune system went haywire, similar to virus-induced aplastic anemia??? Are you still on cyclosporine?

Do you get any boost immediately after your platelet transfusions or is it pretty minimal?

You and your doctors are in my thoughts and prayers.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #9  
Old Tue Nov 1, 2016, 04:18 PM
Data Data is offline
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Thanks

Hopeful,
Funny you should mention Aplastic Anemia. When I read the definition of AA it does look my recent history. I was on cyclosporine but they took me off of that. The average increase in platelets has been 36.5 over 6 infusions where they have done a post infusion CBC. All totaled I have had 11 infusions since 10/11/16. I have been told the low platelets can make you tired and it seems to be true. I don't feel any different after the infusion though.

Thanks again for you post.

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #10  
Old Thu Nov 3, 2016, 11:25 PM
Hopeful Hopeful is offline
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Hi Data,

Did they take you off of cyclosporine early because of the viruses? I wonder if it would make sense to start back up on it now???

It is good that you are getting a boost from the platelet transfusions. I hope they can figure out why you are burning through them so quickly.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #11  
Old Fri Nov 4, 2016, 03:35 AM
DanL DanL is offline
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Data,

I experienced a decline in counts at around 6 months. I had very hypocellular in the marrow at 5-15%, and my counts were quite off. I also had some evidence of cytogenetic mutations in 1 out of 25 cells analyzed. My doctor spoke of doing some form of a boost, but thought that the declining numbers was due to GVHD or relapse potentially. I was put on vidaza and rituxan to try and combat both simultaneously, also to get rid of the steroids that I was on to try and tackle the gvhd.

After a single cycle of vidaza, my counts started improving, and by the time we finished with the rituxan, my gvhd had begun to quiet down. I had minor gvhd on most of my skin - really noticeable on the arms, legs, and face/neck. I had upper and lower gi symptoms, problems in my joints and eyes. All but the lower gut gvhd improved pretty well.

The part of your biopsy that concerns me is the dyspoesis, but that could be marrow stress from drugs or viruses, or hypocellularity.

End result of your question - yes, I had declining counts about 6 months in - the diagnosis was relapse or gvhd - both of which may have responded to vidaza and rituxan.

I have only really had gut gvhd with occasional flare ups in the other areas, but I am down to a low concentration of tac, regular photopheresis, and a small dose of budesonide every other day. Counts are really close to normal currently. All treatment with Vidaza and Rituxan ended in Feb 2015.

Good luck getting this challenge out of the way.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #12  
Old Fri Nov 4, 2016, 08:13 PM
sstewart09 sstewart09 is offline
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B12?

My husband experienced a decline in counts around 8 months post transplant which was attributed to a b12 deficiency. The deficiency was not picked up in his blood work because taking a folic acid supplement can mask it. This was picked up with a bone marrow biopsy. As soon as he started to receive b12 injections, his counts turned around.
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  #13  
Old Fri Nov 4, 2016, 09:46 PM
Data Data is offline
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Update

I had a doctor's appointment today and my WBC, RBC, and platelets were all up slightly. I would like to see several consecutive increases so I am cautiously optimistic. Doc still isn't sure what the cause is.

Thanks for all the comments and suggestions.


Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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