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  #1  
Old Fri Apr 7, 2017, 01:34 PM
Marrowforums Marrowforums is offline
Marrowforums.org
 
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Site Availability April 2017

The Marrowforums forums were unavailable for 5 to 6 hours today, due to changes by our service provider.

We have restored forum availability and we will continue to monitor the situation.

Our apologizes for the inconvenience.
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  #2  
Old Fri Apr 7, 2017, 02:27 PM
bailie bailie is offline
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Thank you Neil for all of this. We really appreciate the effort you have made through the years.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Fri Apr 7, 2017, 06:55 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by bailie View Post
Thank you Neil for all of this. We really appreciate the effort you have made through the years.
Thanks. The way I see it, when people are fighting a life-threatening disease, the last thing they need is a computer problem to add to their struggles.
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  #4  
Old Mon Apr 10, 2017, 08:05 PM
Cheryl C Cheryl C is offline
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Thank you very much from me too, Neil. Marrowforums is a life-line as I don't know anyone else with MDS. I've learned so much, and the courage of those who fall into the high-risk category is inspiring.
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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. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #5  
Old Sat Jul 15, 2017, 03:37 PM
Warburg Warburg is offline
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Join Date: Jun 2017
Location: Miami Beach
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Are these forums active? I realize that bone-marrow diseases are rare, but I have myelofibrosis, and I'm surprised that there is so little discussion of it here. I did find one thread that dealt with a bone-marrow transplant, but that's all.

Last edited by Warburg : Sat Jul 15, 2017 at 03:47 PM.
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  #6  
Old Sat Jul 15, 2017, 06:51 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by Warburg View Post
Are these forums active? I realize that bone-marrow diseases are rare, but I have myelofibrosis, and I'm surprised that there is so little discussion of it here. I did find one thread that dealt with a bone-marrow transplant, but that's all.
Marrowforums is primarily focused on aplastic anemia, MDS, PNH, and PRCA. Many of these patients are also dealing with myelofibrosis, which is why you find it mentioned in some of the discussions.

Here are two listservs that people with myelofibrosis might find useful:
MPDSUPPORT@LISTSERV.ICORS.ORG

MPN-NET@LISTSERV.ACOR.ORG
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  #7  
Old Sat Jul 15, 2017, 09:40 PM
triumphe64 triumphe64 is offline
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It is beginning to be supported by the Aplastic Anemia MDS Foundation.

http://www.aamds.org/diseases/related/myelofibrosis-mf

Contact them for more information.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #8  
Old Fri Sep 1, 2017, 04:12 PM
onamission onamission is offline
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Quote:
Originally Posted by Warburg View Post
Are these forums active? I realize that bone-marrow diseases are rare, but I have myelofibrosis, and I'm surprised that there is so little discussion of it here. I did find one thread that dealt with a bone-marrow transplant, but that's all.
My wife has Myelofibrosis and chose no conventional treatments. For the last 22 months she is using 12 grams a day of Liposomal Vitamin C, 3 grams of sodium selenite, sodium bicarbonate and 45 MG menatetrenone as the core of her protocol. She has a high level of energy. Her oncologist in Chapel Hill tells her keep doing what you're doing. If you want more details, I'll be happy to supply.
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  #9  
Old Sat Sep 2, 2017, 03:04 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by onamission View Post
My wife has Myelofibrosis and chose no conventional treatments. For the last 22 months she is using 12 grams a day of Liposomal Vitamin C, 3 grams of sodium selenite, sodium bicarbonate and 45 MG menatetrenone as the core of her protocol. She has a high level of energy. Her oncologist in Chapel Hill tells her keep doing what you're doing. If you want more details, I'll be happy to supply.
onamission,

I'm glad your wife is doing so well.

What would the conventional treatment have been?
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