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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jul 23, 2019, 06:24 AM
JoMac53 JoMac53 is offline
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Refractory to platelet transfusions

I have become refractory to platelet transfusions. After three consecutive units my count is at 6, down 1 from before the transfusions. They sent my blood samples to the world blood bank for HLA typing and some other type of test, I can't remember the name of right now.

Anyone have knowledge or experience of a positive nature to share?


I could really use prayers, too, this is really scary.

Thanks. Jo
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #2  
Old Tue Jul 23, 2019, 12:23 PM
Sally C Sally C is offline
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Hi JoMac,
I'm sorry I can't give you any information about your situation. What I can do is tell you about my husband's journey - I have posted quite extensively on the forums. In a nutshell he had over 125 blood/platelet transfusions starting in Jan., 2009. His platelets hit a low of 4,000 while receiving transfusions. He was the first MDS patient at NIH to receive Eltrombopag (Promacta) starting in the spring of 2011. Once his platelets hit 100,000 they weaned him off in 2012. He has been in remission since - last check this month his platelets were 120,000 after an episode of sepsis (due to colitis). Strangely that was the highest they have been since 2012. If interested please go back and read my posts. It has been nothing short of a Miracle.
I wish you all the best and if you have any questions please feel free to ask.
Sally
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  #3  
Old Tue Jul 23, 2019, 10:27 PM
DanL DanL is offline
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JoMac,

HLA typing and cross matching platelets can help increase effectiveness of transfusions, as do the tests for antibodies.
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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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  #4  
Old Wed Jul 24, 2019, 01:56 AM
Meri T. Meri T. is offline
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Hello Jo,

I had the same problem with my platelets, they dived from double digits down, and I needed transfusions every 10 days which helped somewhat. That was when the doctor decided for my SCT. The SCT timing, that is, was due to my platelets.

I heard that you have 3 very good matches and a good doctor. I hope your insurance will cover all your needs for the SCT.

I have a rosary prayer group after morning mass, your name has been added to the prayer list since this morning.
Please take care.

Meri
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Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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  #5  
Old Thu Jul 25, 2019, 12:18 AM
Cheryl C Cheryl C is offline
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Hi Jo - I'm praying for you too. May you experience God's comforting presence as you deal with this problem. (If you have a Bible, Psalm 61:2 is for you).
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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 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #6  
Old Thu Jul 25, 2019, 09:37 AM
JoMac53 JoMac53 is offline
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SALLY - I have read your posts before but will try to reread them. It's my understanding Promacta now has a boxed warning that it's not for use in MDS patients because it can speed up transition to AML.

DanL - I just received my second unit of cross matched platelets this morning. My count went from 6 to 13 after the first unit but back to 6 within 24 hrs. I have one more unit reserved for me. If these don't "stick" I think they will try HLA matched.

Meri - I was already scheduled for my transplant but suddenly and rapidly developed features of both MPN and CMML (dr. said I ws a very rare case) and ended up being admitted to the leukemia floor for 4 weeks for chemo to knock out the WBCs before proceeding with the SCT. The dr says we're still on schedule for SCT as I will go home from here for 2 weeks then back in for transplant. They don't seem concerned about the platelets even though I am currently needing platelets every day, and twice a day before they started using the cross matched platelets. In fact, I'm having a bmb today or tomorrow to see if there are any bad wbc left. If so, I'll get more chemo (either more vyxeox if only a few or something stronger if many) to finish them off, but still on scheedule for transplant. My peripheral wbc count is 0.3 so I can't imagine what they might find in the marrow.

So far, medicare & supplemental ins have taken care of everything for this part of my treatment and I was told previously by insurance coordinator that the transplant would be covered completely because I was enrolled in a Medicare tracking trial. Everyone with medicare has to enroll in it to be covered so they can track the benefit of transplant to people over 65. Before this trial they didn't cover SCT for anyone over 65.

Thank you for adding me to your rosary prayer list. It's a powerful prayer. I pray it every day here in my hospital room.

Cheryl - Thank you for your prayers & the verse. Very comforting.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #7  
Old Thu Jul 25, 2019, 08:34 PM
Sally C Sally C is offline
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Hi JoMac,
That issue was told to us when Don started Promacta as he has MDS. As with all these treatments there are risks involved as I'm sure you know. It was a desperate situation for him - we both doubt he would still be here had it not been for Promacta. When he signed the release forms for his first treatment which was Campath, one of the side effects listed was death. Sometimes it's a matter of picking your poison. We are so Blessed that we found something that so dramatically turned things around and still is to this day.
I so wish you well and just sent prayers your way. Please keep us posted.
God Bless,
Sally
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  #8  
Old Sat Jul 27, 2019, 11:14 AM
JoMac53 JoMac53 is offline
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Well, now I've developed gi bleeding and the hla plts won't get here till next week so doc is putting me on Amacar IV and possibly some steroid, and blood & reg. plt transfusions. Gonna be a long weekend.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #9  
Old Sat Jul 27, 2019, 08:21 PM
Sally C Sally C is offline
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God Bless you, protect you and comfort you JoMac. Keep the faith.
Sally
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