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#2
Sat Jun 18, 2011, 07:37 PM
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I put Exjade on hold for a day, then resume the usual dose 24 hours later. It works for me but I'm not on Vidaza; only regular PRBCs.
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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
Sat Jun 18, 2011, 10:24 PM
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The "trots"
lol! Haven't heard that expression for years....and now I sound like a geezer!
Go figure--I got SO constipated on the Vidaza/Zofran combo I thought I would have to go to ER! Amazing how meds affect everyone so differently....I take Exjade daily and still need prunes! haha The BRAT Diet....Banana, Rice, Apples and Tea are supposed to binding...at the very least, a big bowl of warm brown rice wood be a good thing...best of luck!
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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
Sun Jun 19, 2011, 02:06 AM
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Hi
When I had "the trots" from Exjade the pharmacist suggested eating apples. It didn't work for me because I had stomach pain and couldn't eat but it sounded such a simple natural solution and I thought I'd give it a go next time I have a problem. Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#5
Sun Jun 19, 2011, 09:55 AM
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I too would stop the Exjade for a bit and restart. I would start up again with lower dose and work back up. Some just need a lower dose altogether and others resolve the problem when they stop it for a while and then are able to resume at the full dose without further problems.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#6
Sun Jun 19, 2011, 09:03 PM
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Like Cheri, I have the opposite problem with Vidaza and Zofran.
I've also heard of the BRAT diet for diarrhea except was told the T is for toast, not tea.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#7
Tue Jun 21, 2011, 10:30 PM
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thanks again kids, for the info, off ex-jade for a couple of days, trots stopped
now maybe between ex-jade and vidaza he can have normal....., never in my life did I ever think I would ask about this subject on a forum.
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#8
Wed Jun 22, 2011, 07:23 PM
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LOL!
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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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the trots
