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#1
Tue Aug 21, 2012, 07:10 AM
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What do you mean by "bleeding"?
I have a question for all of you. It's kind of wierd, but.... I keep hearing about people saying on the forum that the person with MDS started "bleeding." So WHERE are we talking about? My mother hasn't had a bleeding episode yet, but I want to know what to look for (her platelets hover in the 20-30k range most of the time). Are we talking bleeding in the mouth, ears? What? Or is it in the genitourinary area? My mom has huge, huge bruises on her arms and legs - but she's never bled on the outside (yet, thankfully).
I would appreciate anyone who can tell me what I need to look out for. Thanks.
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Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06 
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#2
Tue Aug 21, 2012, 07:51 AM
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Jil;
A bruise (black and blue mark) is actually a broken blood vessel under the skin - thereby consider a bleed. Heavens NO - if your Mom starts bleeding out any orifice on her body - call 911. Elderly tend to bruise easier than younger persons anyhow because they have lost so much of their body fat and muscle mass - they don't have any 'cushion' left. Hope this helps. Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS  . and I can't help the one I love the most.
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#3
Tue Aug 21, 2012, 09:53 AM
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Jil,
My husband has virtually no platelets and has never had what I consider active bleeding - nosebleeds, blood in his urine, etc. I think they call it adjusting to low platelets, which some people do and some people don't. I think I've read where some people have active bleeding around 20,000 so we've been lucky that Al has been able to function on these low counts. But he did get large blood blisters in his mouth a couple of weeks ago. When the doctor saw them, he said that that is considered bleeding. Fortunately they cleared up with a drug called Amicar that he stays on now for low platelets. It is to help your blood clot. The doctor said if he started active bleeding to give him a couple of the pills while we are waiting for 911.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#4
Tue Aug 21, 2012, 10:00 AM
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When my platelets were low, I began to wake up to my gums bleeding. It got really bad at times where I was stuffing paper towels in around my gums. It was scary at first but my hemotologist was not very concerned, and said that sometimes happened. It would be on again off again. This was during periods that I began platelet transfusions, while on Vidaza.
Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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