Anyone in Maine with MDS?

[MrsWard2002]

I was diagnosed on 6/27/11 with MDS/Acquired Refractory Anemia. After a bone marrow biopsy, it was determined there are no cancer cells. My body is producing two abnormal cells. But because in 2009 I was diagnosed with Mantle Cell Lymphoma, they didn't want to wait to do something about the MDS.

I did not have to have any prior chemo. I entered BWH in Boston, MA for 4 days of chemo (3.5 hrs per day); and then I had a Mini Allo transplant from a 27 yr male unrelated donor. I am now at day +34 and feeling good.

Just thought I'd check to see if there is anyone out there who might be close by.

Teresa/Maine

[usaf1125]

I have had MDS for 7 years, I don't pay any attention to any of my numbers except my CRT level and my FER level. Have been getting transfusions since 2004, now up to 2 units every 2 or 3 weeks, have had a total pf 277 units, that's why I watch the FER level. I don't let it worry me, won't do any good.. I get blood when the CRT drops below 29, FER was over 3000 for about 5 years, finally started to drop in the last month it's down to 2385. I'm 79, all I want is to see my granddaughters graduate HS, they are 13 & 15. My wife and I volunter with the Castle Island Assoc. as tour guides at Fort Independent on Castle Island ,South Boston. We just got thru with Halloween at the fort, was 22 & 23 October, there were about 9800 people over the 2 days. closed for the year now, will reopen Memorial Day weekend 2012. Quite time now, Thanksgiving and Christmas with the family. Read some good books, try to walk has much has possible. Good luck, don't let it get you down.

[donna j.]

Hi,

Are you still in the hospital? Are you comuting from Maine? Daily, weekly? Being treated close to home? What is your transfusion and medication regime?
I am considering a mini transplant at Brigham/Women's Hospital through Dana Farber, but will have to move up there for 100 days. I have been quoted rents 4,500 a month.
Wonder what your regime is like.

Donna J.