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#1
Sun Mar 29, 2015, 11:59 PM
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ny times article By MIKKAEL A. SEKERES
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA. 
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#2
Tue Mar 31, 2015, 09:32 AM
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Thanks for posting this article. Very informative regarding gene mutations. Really sheds light on the complexity of the genetic puzzle. It reinforces the notion that just because you have a mutation, doesn't automatically mean you'll get cancer.
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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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#3
Tue Mar 31, 2015, 10:08 PM
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Mthfr?
Very interesting! Thanks Tom.
My family commonly has a mutation in the MTHFR gene. Just wondering if any of you have heard of this in relation to MDS? I haven't been tested myself.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#4
Tue Mar 31, 2015, 10:51 PM
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Hi, the whole MTHFR discussion is over my head, there are several threads that have mentioned it in the past. I haven't been tested for it. I did some research on it a while ago and then dropped it after discussing with my doctor. The author of the article has been referenced numerous times in these forums and the fact that it also references a pbs tv documentary struck me as interesting and wanted to pass it on to this forum.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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#5
Wed Apr 1, 2015, 02:47 AM
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The first parts of The Emperor of All Maladies are viewable now at
http://video.pbs.org/program/story-c...-all-maladies/ From what I've seen so far, it is a really well made series. It is fascinating to watch the history of cancer research, although the personal stories intertwined are tough. Very thought provoking...
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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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#6
Wed Apr 1, 2015, 09:57 AM
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Quote:
It's odd that the show didn't mention the FDA when talking about the leukemia (and MDS) drug Gleevec.
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#7
Wed Apr 1, 2015, 08:14 PM
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Installment #3 tonight...
Saw the first - very well done. Recorded #two (the blind men and the elephant) yesterday and #three (finding the Achilles Heel) tonight on PBS.
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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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#8
Thu Apr 2, 2015, 09:38 AM
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This series was an eye opener on so many levels. I was so glad to see it end on a positive note. The immuno-therapy being done by Dr. June for refractory leukemia was pretty amazing. I hope they start using this as first line therapy for children sooner than later. Not sure why they continue put them through the standard high dose chemo/BMT first when it's so destructive and comes with long term consequences. I know it takes them a long time to give up old therapies but this seems so promising and much less destructive. Below is very small article on Dr. June's therapy.
http://www.sciambenchmarks.com/conte...ith-carl-june/
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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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