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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Thu May 19, 2016, 09:53 PM
john e john e is offline
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Location: berea,ohio
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How long are platelet transfusions effective

I was diagnosed with mds 4 years ago and I have been on a wait and see!
My platelets have slowly dropped in that time form 110 to 91 6 months ago.2 months ago i had a drop to 71. Today while being treated by my family doctor for separate issue, my blood work showed my platelets dropped to 40. if this rate of platelet drops continues I imagine it will not be long before I am faced with platelet transfusions. My question how long can one continue to receive transfusions before they become in affective ?
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John age 62 dx mds 6/11 ipss low rbc normal, wbc2.5 platletts 80 <1% blast no chromosome damage
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Old Thu May 19, 2016, 11:50 PM
PaulS PaulS is offline
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Hi John- platelets don't last very long - have you discussed any other treatments with your doctor - Vidaza - or transplant? When was your last BMB? How did it look? Any cytogenetic abnormalities? Are your other blood counts stable? One test can be an anomaly - but something to discuss with your hematologist. Vidaza can lower platelets before they go up so it might be good to discuss with your doctor sooner.

Hang tough.
Paul
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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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  #3  
Old Fri May 20, 2016, 02:56 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by john e View Post
I was diagnosed with mds 4 years ago and I have been on a wait and see!
My platelets have slowly dropped in that time form 110 to 91 6 months ago.2 months ago i had a drop to 71. Today while being treated by my family doctor for separate issue, my blood work showed my platelets dropped to 40. if this rate of platelet drops continues I imagine it will not be long before I am faced with platelet transfusions. My question how long can one continue to receive transfusions before they become in affective ?
The scary thing about platelet transfusions is that no one can predict when you may become refractory to them and not get any boost. My doctor told me that some people become refractory with only a few platelet transfusions while others can go for a long time. Some centers will do HLA matching for platelet transfusions, others will use large pools of different donors in attempt to decrease the odds of becoming refractory.

I would recommend using this time to get a second opinion. The drop to 40 is concerning without a good explanation (like a recent virus or infection). Do your platelet numbers only go down now, or do you see them recover at times?
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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.

Last edited by Hopeful : Fri May 20, 2016 at 11:19 AM.
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Old Wed May 25, 2016, 01:55 PM
Margaret W Margaret W is offline
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I received platelet transfusions three times a week between 1985 and 1990 and then, the ATG that I had in 1987 kicked in, just in time for my cancer diagnosis in 1990. I had some transfusions for the surgery then and in 1991. Then in 1995, I was found to have an array of antibodies to all transfused blood that was not my own. Before 1985, I had platelet transfusions sporadically, but quite a lot of them around the time I had my son by C-section in the mid-'70s. Just after the surgery in 1991, I became refractory off-and-on to platelets, but afterwards, the antibody prohibition reared up and that put the final "finis" on transfusions for me.

If there's any way you can hold off on unnecessary platelet or RBC transfusions, it's better to go that route. I can't have any more transfusions at all and that's why I can't have another round of ATG, although it's "indicated," according to my current hematologist. I wish I hadn't had "protective," "just in case" platelet transfusions for a couple of extended trips to Europe in the '80s and '90s. That was stupid on my part. Eventually, most people who are long-term transfusion-dependent get their lifetime's allotment of transfusions, and then, that's the end of hanging out and schmoozing in blood banks...

With best regards,

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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Old Sat May 28, 2016, 11:07 PM
Cheryl C Cheryl C is offline
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Does anyone know whether the same applies for IVIg infusions? is there a time when one can't have them any more or do they just eventually become ineffective?
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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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