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

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  #1  
Old Thu Oct 20, 2011, 07:15 PM
riccd2001 riccd2001 is offline
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Location: Burlington,Ontario,Canada
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Cool No Ferriprox for you(MDS)

FDA now says MDS will not qualify for Ferriprox treatment as alternative to Exjade or Desferal.


http://www.mdsbeacon.com/news/2011/1...omes-patients/
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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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  #2  
Old Tue Oct 25, 2011, 08:51 PM
usaf1125 usaf1125 is offline
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Location: Stoughton, MA
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Smile The old Welshman

I have had 277 units of blood, Ferritin level was off the charts. Have been taking ExJade for 5 years, can only take one daily, even the one sometimes cause an upset stomach. On 10/17/11 the level was down to 2854, it does take a while, but it will come thru. I've had MDS for 7 years, transfusions started slow only had 4 the 1st year,now I'm up to 2 units every 2 to 4 weeks, it varies, most of the time it's 2 weeks. I worry more about the iron levels than I do the MDS. Other than the transfusions the only thing I take is 40,000 units of Procrit one a week, I inject my self. I have no idea what my blasts are or anything else. The only things I pay attention to is my Crt level and the ferritin. I don't worry about it, because I can't change any thing. That's the only advice I can give. worry never changed anything. I have had two Triple A operations, my appendix out twice, Arnold Chiari Malformation, 4 heart stents, I have Chron's as well. So when I say don't worry, don't. I hope everything works out for you, I know it's hard but don't let it get you down. I'm 79 years old now and I welcome each day as a marvelous event
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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Old Wed Oct 26, 2011, 08:52 PM
cathybee1 cathybee1 is offline
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Wow, you are so inspiring. And your advice is worth millions. Thank you --
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #4  
Old Wed Oct 26, 2011, 11:42 PM
usaf1125 usaf1125 is offline
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Location: Stoughton, MA
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Transfusions and iron overload

Thank you Kathy, I hope I helped you, I know it can be difficult, but keep it at arms length, don't let it get you down. I break down every now and then ,that's human nature.Keep positive ,enjoy every day, and remember there is always some one out there that has it worse than you.Treat each day has a marvel, be good to your self and any one you meet. REMEMBER WORRY WILL NOT CHANGE ANY THING.Prayer is OK, but worry is out. I don't come on to this site often, if you would like to talk go to leojean@comcast.net, make the subject "Bone Marrow MDS" good luck.
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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