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We've been so lucky … but …..

This topic has 5 replies, 1 voice, and was last updated 15 years, 8 months ago by czaring.

Viewing 6 posts - 1 through 6 (of 6 total)

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July 31, 2008 at 3:20 pm #21103

czaring
Member

My mom’s stats from her diagnosis appear below. She is fortnunate to live in Seattle near “Fred Hutch” and has the care of a very well respected Doc. She’s been responding to Aranesp until March of this year. Her #’s were so good – they skipped the shot for 5 wks – and then #’s began to take a tumble and they haven’t yet stopped!! I’d still like to know if the decision to hold the shot during “good” (low normal) #’s is more Medicare driven or medically driven. Maybe it is coincidence that her #’s tumbled when they did … who knows. Back to Doc today. Another BMB sounds ominent. Wondering about both Revlimid and Tx. Guess we’ll know more after BMB.

July 31, 2008 at 4:06 pm #21104

Sister
Member

Hello,
I am brand new here.
My brother(54,in SF) was diagnosed with MDS last month. I am still collecting detailed information from him. Will share once I get them.

I have done a lot of research myself. For those people who are looking into bone marrow transplant, please go to http://www.marrow.org. Go to Patients/family in the site, there are TONS of information on each transplant center (e.g., how many tranplants were performed, on what disease, success rate after one year etc).

Sister

August 5, 2008 at 5:45 pm #21105

jga_socal
Member

Sista,
Also at marrow.org you can fill out a form to have all kinds of free material mailed to you! Yay!

August 5, 2008 at 6:03 pm #21106

sophia68
Member

Quote:

Originally posted by Sister:
Hello,
I am brand new here.
My brother(54,in SF) was diagnosed with MDS last month. I am still collecting detailed information from him. Will share once I get them.

I have done a lot of research myself. For those people who are looking into bone marrow transplant, please go to http://www.marrow.org. Go to Patients/family in the site, there are TONS of information on each transplant center (e.g., how many tranplants were performed, on what disease, success rate after one year etc).

Sister

Hi “Sister”,

Here is an excellent booklet on MDS…

http://www.leukemia-lymphoma.org/attachments/National/br_1205868296.pdf

August 6, 2008 at 1:41 am #21107

Dot M
Member

czaring,
My husband’s mds sounds very much like your mom’s
. Look us up under revlimid 5q in this forum, My name is Dot Mounger, Husband is Tommy. He did good on Procrit for 5 years, then it stopped working. He is now on Revlimid and doing GREAT!! NORMAL COUNTS FOR ALMOST TWO MONTHS. Email address is dm4311@aol.com,telephone is 318-263-8081.

Dot M

August 10, 2008 at 4:03 pm #21108

czaring
Member

Thanks so much Dot M.

I sent an email … but of course there is always the risk of a new address being booted by junk mail protection. Thank you for getting in touch. I’ll keep my eye out for your response.

cz
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