Site Availability April 2017

[Marrowforums]

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.

[bailie]

Thank you Neil for all of this. We really appreciate the effort you have made through the years.

[Neil Cuadra]

Originally Posted by bailie

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.

[Cheryl C]

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.

[Warburg]

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.

[Neil Cuadra]

Originally Posted by Warburg

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

[triumphe64]

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.

[onamission]

Originally Posted by Warburg

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.

[Neil Cuadra]

Originally Posted by onamission

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?

[nacaroth]

Originally Posted by Neil Cuadra

onamission,

I'm glad your wife is doing so well.

What would the conventional treatment have been?

Hi yes I was wondering what alternative treatment your wife is using and the success. My father just got diagnosed and is choosing no chemo. We are very alternative. Thank you in advance for your time. We were hoping to get him started today or tomorrow. Also we were going to try the h202 as well, as this helps oxygenate the blood. Any information would be greatly appreciated!