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MDS Myelodysplastic syndromes

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Old Sat Jan 16, 2016, 11:14 PM
Maura R Maura R is offline
Join Date: Aug 2015
Location: Hyde Park, NY
Posts: 20
Mom diagnosed with MDS

I haven't posted in quite awhile about my mom's diagnosis, but I'm having some concerns again.
My mom was getting platelet transfusions every other week and then they started steriods with her treatments. She received 2 transfusions with the steriods, but they were discontinued because my mom had an awlful reaction to them. She was pretty much bed ridden for 2 days afterwards. The funny thing though, after her last transfusion with the steriod, it kept her platelet levels at bay. She hasn't had a transfusion in over 11 weeks. Her levels keep bouncing up and down, which we don't understand. Has anyone experienced this?

She just had an appointment this past Tuesday, her platelet count was at 21, which went up from 16 (doctor only tranfuses when below 15) and the doctor wanted to transfuse due to my mom's bruising and her gums bleeding. After this transfusion, she has felt awful. Extremely tired and very weak, pretty much the feeling she had with the steriods.

My question is, Is this from the MDS itself, is she having a reaction to the platelets? I know that the platelet levels being low makes you tired, but it just seems so much worse lately, and not really getting any real answers from the doctors as if the disease has progressed or not.

Just looking for some honest feedback.
Thanks so much
Maura R

Mom DX with MDS RAEB 2 with blasts @15 to 18%...just monitoring blood work and transfusions when needed
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Old Sun Jan 17, 2016, 04:44 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 548

I lived with low platelets from 2010 through 2015- platelets only normalized about 3 months ago even after transplant. From my experience, low platelets doesn't have much correlation to low energy. by low platelets, prior to transplant in February 2014, my platelets hovered between 20k and 31k, never higher, never lower - that we measured anyway - and I was tested weekly.

At the end of 2015, we changed some medications and my platelets rose and I am now well above 200k - a nice relief for me.

As for transfusions and transfusion reactions - I personally have done better with dexamethasone as compared to prednisone in terms of side effects. Platelet transfusions can be funny. Has the doctor tried 1) blood type matched platelets and/or 2) HLA typed and matched platelets?

The first one helps some patients, the 2nd helps most everybody both in terms of how long the platelets hold, and how well the patient receives them.

good luck to you and your mother!
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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Old Mon Jan 18, 2016, 12:56 PM
Maura R Maura R is offline
Join Date: Aug 2015
Location: Hyde Park, NY
Posts: 20
Dan L,

Thanks for the reply. My mom's platelets went up to 32 with this last transfusion and had a good talk with the PA about how she's been feeling. They do crossmatch her blood before every transfusion, I believe they do the second of what you mentioned. We will see how they hold come next week.
They feel that my mom is holding on well, as all her other levels are good, which when she was diagnosed weren't.
Thanks again for making me feel a little better
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Old Tue Jan 19, 2016, 11:52 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 695
Hi Maura,

I use to get weekly platelets and remember the fatigue when my platelets were low (<15k). I attributed the fatigue to my marrow cranking away, even though there wasn't a lot to show for it. I felt "fragile" when my platelets would drop below 12k.

I use to have allergic reactions to the platelet transfusions and got a bunch of pre-meds that would make me very sleepy for the rest of the day. However, unlike your mom, I always had an increase in energy for a few days after the meds wore off, until my platelets dropped low again.

I had leukocyte-depleted, irradiated, HLA-typed-and-matched platelets. I always checked the bags. The blood center tried to obtain single donor platelets, to minimize reactions. (Thank you platelet donors everywhere!)

Also, it is normal for platelets to bounce around. Nowadays, mine will swing +/- 7k month-to-month. This isn't a big deal if your platelet counts are good. If they are low, it is scary.

I always had a lot of spontaneous bruising when my platelets were below 20k. This alone didn't alarm me. Seeing bruising in your mouth though is a cause for concern, as are spontaneous bleeding, severe headaches, and confusion.

Has your mother had her clotting factor recently tested?

It is great that she went 11 weeks between platelet transfusions! I wonder if she had a positive reaction to the steroids???
52 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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Old Wed Jan 20, 2016, 11:15 AM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Platelet numbers can be interesting. I get a CBC every week or two. My platelets will change from about 60 to 250 during a month. I am on Vidaza which really affects blood counts. Every month I will hit the low of about 60 at 10-12 days following Vidaza treatment. Then the platelets increase to around 200-250 in the fourth week after Vidaza treatment. RBCs don't change much. WBCs and Neutrophils are not predictable.
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 Wed Jan 20, 2016, 06:05 PM
Maura R Maura R is offline
Join Date: Aug 2015
Location: Hyde Park, NY
Posts: 20

Thanks for the reply. No, my mom hasn't had her clotting factor done. I will ask on Tuesday as she sees the doctor then. She has had the spontaneous bleeding of the gums, and is quite confused lately, which is why I'm so concerned. Haven't noticed any bruising inside the mouth though.
She did very well with the steriods, but had such a bad reaction to them that she refuses to get them again.
Thank you also for the information on the platelets, I will check the bag the next time she gets them.
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