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Old Mon Nov 14, 2011, 11:36 AM
sophia68 sophia68 is offline
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Dad's Iron and Ferritin Levels

Just got results from dad's recent blood work:

Iron & TIBC: 575 (H) Range 250-450
Iron Serum: 269 (H) Range 40-155

Testosterone: 87 (L) Range 348-1197

Ferritin: 2401 (H) Range 30-400

His ferritin level is really high. What does this mean for his kidney/liver?
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Dad (83) DX w/MDS-RARS on 6/10/06.Prev treated w/Vidaza & Thalomid w/o success. Treated w/Decitabine w/some imprv discont after no resp. TX dep as of Aug'10 (evry 2-3 wks). Curr tkg Revlimid since Feb'11. Exjade since Apr'11. Recd lwr dsg decitabine on 6/6/11 in comb w/rev.
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Old Mon Nov 14, 2011, 12:14 PM
Marlene Marlene is offline
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Is there a reason why they have not considered putting him on testosterone? John's was very low also so he went on bio-identical testosterone cream. He started at a very low dose and worked up to high, but probably less than a normal dose. It did a world of good for energy and strength. With your Dad's so low it can make a big difference in quality of life. We avoided the oral because it has to processed by the liver and felt we had more control with the topical. Testosterone can also help with red cell production.

Is he having problems with his liver/kidneys? Exjade can be hard on the kidneys. How often to they run a chem panel on him.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Wed Nov 16, 2011, 08:05 PM
Greg H Greg H is offline
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Sophia,

The subject of iron overload and chelation is extremely controversial among MDS experts. As one of my NIH doctors said, "Where there is not good data, there are lots of very strong opinions."

Exjade, which seems to be the drug of choice for chelation, is outrageously expensive and, as Marlene notes, potentially hard on the kidneys (and the eyes). But lots of docs feel there is good evidence that iron overload can harm the liver, the heart, and other organs.

There's lots of research that attempts to demonstrate the danger of iron overload and the positive effects of iron chelation (much of it funded by the maker of Exjade).

So, it's a tough call, and may depend, to some degree, on the age and prognosis of the individual patient. A younger patient receiving transfusions may face the prospect of many years of increasing iron, while that may not be as likely for an older patient.

Many folks on marrowforums are using or have used Exjade. Some are trying wheatgrass juice as a natural chelator.

If your Dad is having RBC transfusions, his ferritin will likely continue to climb with each transfusion. It's probably worth having a conversation with his hematologist about the iron overload issue to see where he stands on the issue -- and why.

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com

Last edited by Greg H : Wed Nov 16, 2011 at 08:07 PM. Reason: added a word
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