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Independent, up-to-date news and information for MDS patients and their families.
If you have any questions or concerns regarding The MDS Beacon, please email us at .
Notifications about MDS news and events can be sent to .
I just found your site. My father in law has MDS. How can I sign up to get the beacon? It looks to be very helpful. Thank you.
MMF
Margie, you can sign up to receive our news articles by email. Sign up is available on our Email Subscription page.
We wish your father-in-law the best.
I was diagnosed with MDS: RARS in 1990. My HCT was 25-28 at that time. I decided to be very deliberate about diet and exercise to maximize my energy, and to control the factors that I could control. I believe that that has paid off.
I have tried the neupogen/procrit combo, a phase 2 drug trial, Thalidomide, and Revlimid. None of these has boosted my RBC count appreciably.
My clone has been indolent, my doctor says. I now hit a low of 18 HCT. I get transfusions about every four weeks, and I am grateful to people who give blood. The transfusions allow me to live a more normal life.
I hope they find a true cure for this set of diseases.
Several of my friends have tried your link in order to respond to the PUBLIC COMMENTS for MDS, but for some reason it will not link them to the page? I tried the link with the same results. It has not worked Dec 9, and now Dec 10. We are missing names….
Please advise
Thank You
Jack
Dear Jack,
It appears that the relevant CMS pages are loading slowly. After waiting several minutes, I was finally able to access the page for public comments. A few other pages timed out on me. I suspect that if you are able to successfully load the comment page that the submission may also be slow. I called CMS, and unfortunately, they said that page is the only way to submit a comment. They suggested that the page is probably slow to load due to the number of people trying to access it and recommended that you continue to try again.
Best of luck getting through.
Julie
I would like to know how I can subscribe to your news letter and can I have it delivered to my home?
Thank you,
Mary Vernieri
We do not currently have a print version of The Beacon. However, you can subscribe to our email list to receive a copy of each article by email. You can sign up for our email subscription by going to this link:
http://www.mdsbeacon.com/email-subscription/
Question…. a friend is on Xjade. I’m looking for a good website that lists food that is low in iron.Thanks for any help.
Hi Myrna.
You can find a list of low-iron foods here:
http://www.thalassemia.com/iron_foods.html
We wish your friend the best of luck with her treatment.
Thank You Linda.
There are several websites I found since the comment that are more
expanded. Also the Wheat grass drink helps block the iron in foods as does drinking tea…it seems the tannin in tea helps also.
My wife has recently relapsed into MDS from her prior remission in AML. The doctors seem very surprised by this, as most,if not all, patients relapse from AML back into AML. She was diagnosed with AML in April of 2009 and was in remission 6 weeks later after induction Chemo. She had 5 subsequence Chemo,in hospital, treatments over the next 5 months and has remained in remission until 4 moths ago when MDS was diagnosed. Has anyone else had this happen to them? The question the doctors seem to be asking themselves, is how best to treat under this unusual circumstance.
Thanks,
Terry
MY husband has 1286 ferritin ,i need to now what kind natural medicine he can take for lover ferritin ,he is 67 yeras old ,he takes zoolite natural medicine and not helps,we are in florida 33455
p;ease ,help me
Alina
Hello Alina.
You may find this article helpful.
http://www.mdsbeacon.com/news/2009/06/02/study-shows-iron-chelating-properties-of-wheat-grass-juice-asco-2009/
It reviews research into how wheat grass juice may be able to bind and inactivate ferritin:
Best of luck with your husband’s ferritin levels.
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