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#1
Tue Apr 3, 2012, 10:08 AM
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Mouth Sores
Recently I have been getting black mouth sores on the inside of my cheek....
My Dr always checks for them, but until recently, I haven't had them. I know it is a sign of something, I just can't remember what! I just know it's not a good sign...they go away after several days, but then I just got another one. I am NOT on any type of chemo currently, which is generally a cause. Anyone?
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly 
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#2
Tue Apr 3, 2012, 11:55 AM
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It's a mystery to me too. Usually I have them within a few days of PRBC transfusion. Curently off Exjade for another week or so - I thought there was a connection, but the sore I'm dealing with now has been the most painful and long-lasting. I guess for me it's just a risk involved with living with regular transfusions. None of the usual mouthwashes that have been helpful to me so far have done anything for this nasty little $#%@^#.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#3
Tue Apr 3, 2012, 01:10 PM
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hi ric...
Funny, I do need a tranfusion tomorrow.......or do you get them after? I have been getting a lot of transfusions and am now on Procrit weekly...... Mine don't hurt, per se...
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#4
Tue Apr 3, 2012, 06:54 PM
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Well, I saw the Doc today and he said they are blood blisters, not mouth sores...I guess I have been biting the inside of my cheek when I sleep?
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#6
Wed Apr 4, 2012, 09:09 PM
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Hi Bebop!
How are you holding up! Thanks for keeping in touch!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#7
Thu Apr 5, 2012, 12:01 AM
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Hi Cheri,
I remember getting them when my platelets were low. They can even occur on the roof of your mouth and places where you can't bite.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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#9
Thu Apr 12, 2012, 05:00 PM
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Cheri;
Are you on any type of antibiotics? I know when my husband is on IV Vancomycin - or when I have given it to him at home via his PICC line and an intermate - he always gets mouth sores. Rocephin does the same thing to him. Ask your Dr. to order you "Swish and Swallow". It is a combination of 4 different things - but soothes the mouth, and lets you eat. All druggists that I know are able to mix it. Good Luck to You. 
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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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