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MDS Myelodysplastic syndromes

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  #1  
Old Sun Mar 24, 2019, 10:15 PM
rar rar is offline
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CBC Test

I am 4.5 years post SCT. I still have GVHD and get blood tests and doctor visit once a month. My CBC came back with Target Cells, Schistocytes, Giant Platelets, and RBC and Platelet Morphology. It has been 3 years since I saw these on test results. The rest of CBC and CMP are close to normal except for slight anemia. Are these a signal of a problem?

Ray
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Old Tue Mar 26, 2019, 02:52 AM
DanL DanL is offline
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Ray,

Sorry to hear the news about your CBC. You certainly have battled your way through more than your share of transplant, gvhd and all of their complications.

I'm not sure what all of these things mean, but doing a little research, I am wondering about your liver and kidney function, also, are you taking tacrolimus or cyclosporine?

A couple of articles suggest the possibility of problems like hemolytic uremic syndrome and calcineurin toxicity for the presence of schisocytes, and this might also explain the problems with the platelets and RBC shapes (target cells).

Hopefully it is as simple as a change in drugs and that your doctor comes up with an answer soon.

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 Wed Mar 27, 2019, 12:01 PM
rar rar is offline
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Hi Dan,

Thanks for the reply. I saw my oncologist. He said since I have had these conditions in the past and recovered and that both my liver and kidney numbers are normal I should wait and watch. He also said I may be coming down with some sort of infection. I am on tacrolimus, prednisone, and imbruvica for immuno suppressants and 19 other medications. After a year of badgering he agreed to taper my prednisone. I will reduce it by 1 mg. every 2 weeks.

II have been slightly anemic since transplant. He has not been concerned about this as he sees this in most of his transplant patients. Feeling somewhat proactive I asked for a ferritin test. It has been normal for years but this time it came back as 8 ng/mL (18 - 464). This may be contributing to my dizziness, lack of strength and fatigue. I hope it is that simple.

Ray
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Old Fri Mar 29, 2019, 05:42 PM
Callie Callie is offline
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RAR and DANL - I don't log in much any more now that Dad's gone, but when I do, I specifically look for your posts and am so happy when I still find them. I wish you the best through this latest obstacle (hopefully a very small one), RAR. Please know Bailie's family still thinks of you both!
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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  #5  
Old Fri Mar 29, 2019, 07:14 PM
Meri T. Meri T. is offline
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Dear Ray,

I have been thinking about you.

I was talking to my uncles, they were war veterans too. My Dad and some uncles have passed away, there are only 2 uncles left, I talked about blood diseases and they talked about Agent Orange and their own illnesses. I told them your story, and it gave them and their families a lot of hope, you know, following your story.

Let me know how your prednisone taper goes down. I am on prednisone 5mgs daily, with cyclosporine 25mgs every other day. Wish it could be tapered.

Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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