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MDS Myelodysplastic syndromes

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  #1  
Old Wed Nov 23, 2016, 08:11 PM
lisa3112 lisa3112 is offline
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Question Low counts still

Hi just wondering if anyone has low counts still post transplant? I am feeling well, just tired. But looking after a puppy and toddler can do that I think. I recently had a biopsy on the 21st of November (mainly for research regarding runx1). Not sure of results yet. But my neutrophils are 0.9 still! I thought being 260ish days post transplant they should have come up. Im only on valaciclovir. I guess I'm nervous because I got diagnosed with aml in December 2015 and that date is coming around quickly. :/ any input appreciated
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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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Old Thu Nov 24, 2016, 11:22 PM
lisa3112 lisa3112 is offline
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Ok so not many people have been in this position.. but for those that come across this issue I am fine. Consultant said biopsy showed my marrow is still not coping 100% from transplant but I remain in complete remission. Now for my brain and anxiety to catch on to this.
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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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  #3  
Old Fri Nov 25, 2016, 02:12 AM
DanL DanL is offline
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Lisa,

I had low blood counts for quite some time. My doctor thought that it was possible that they were caused by gvhd or some other process. I know that they started to climb after a few rounds of rituxan and then finally jumped up the rest of the way last year when I was in the hospital and I received two shots of neupogen. I have had pretty close to normal counts since last October, but was transplanted in February 2014.

Not exactly the same situation. My marrow was very hypo-plastic until the middle of last year -- i was getting readings of 5 to 15% cellularity. Last November cellularity was at about 50% and is now about 60% which is normal for my age.
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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 Nov 25, 2016, 02:47 AM
lisa3112 lisa3112 is offline
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Thanks for experience danl. My doctor doesn't go through biopsy results with me in detail of cellularity. But if he is happy I guess I should be. He doesnt want repeat bloods until January! Sorry about your gvhd... but looks like you're powering on!
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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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  #5  
Old Fri Nov 25, 2016, 11:33 AM
bailie bailie is offline
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Lisa, my counts have remained low normal following transplant. I feel pretty good except for a bout of pancreatitis last week which got my attention. My advice for you would be to get the written analysis of all your procedures and keep them well organized. Don't just rely on the information the Dr. tells you in appointments. Watch for trends.
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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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  #6  
Old Fri Nov 25, 2016, 12:07 PM
sstewart09 sstewart09 is offline
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I completely understand your anxiety with your diagnosis date around the corner. My husband was also diagnosed in December and although he's almost 4 years post transplant, it's still a scary time. Our son was 6 months old at this time so I know it's hard to find the energy to keep up. My husband tired quickly, but our son was definitely his motivation to keep on fighting.
Not sure if your doctor checked your b12 levels with your biopsy, but that was the cause of my husband'a low counts post transplant. The deficiency did not show up in his blood work because the follic acid he was taking. As soon as he started on b12 injections, his counts made a big jump.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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  #7  
Old Sun Nov 27, 2016, 06:32 AM
lisa3112 lisa3112 is offline
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Hi bailie, thanks for input. I actually work at the hospital I get treatment through, so I can see all my results if I get them through hospital computers. I think I'll print a few fbes out like you suggest. Sorry about your pancreatitis! Thats really scary for you to go through. I hope the recovery is going well now.

Sstuart thanks for your reply. Thats amazing your hubby is four years post! I really sympathise with you having young kids through treatment. My boy was 8 months old when i was diagnosed (and i was pregnant but i miscarried naturally). So thankful for our baby! I'm on berocca supplements but will ask consultant about b12 when I see him.
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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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