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Younger Patients.

This topic has 9 replies, 1 voice, and was last updated 12 years, 6 months ago by lindajo.

Viewing 10 posts - 1 through 10 (of 10 total)

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August 24, 2011 at 1:47 pm #23311

scooter
Member

I was just diagnosed with MDS/intermediate. I have all three blood types falling, just had my second transfusion, and start Vidaza Sept.3rd. Is there any good news, everything I read is just bad news. I would like to hear more about patients that were diagnosed around my age. 49
Thanks,
Scooter

August 24, 2011 at 1:57 pm #23312

Andy R
Member

Hi Scooter.

I am 45 and just finished getting a stem cell transplant.

If you want all the details as they happened, check my blog out at http://andy-mds-recovery-journal.blogspot.com/

August 24, 2011 at 2:49 pm #23313

scooter
Member

Andy,
Thanks for the info. My prayers are with you.
Scott

August 24, 2011 at 9:20 pm #23314

McJan
Member

Hi Scooter,
I just turned 50, and was diagnosed with MDS in May 2011, with an IPSS score of 1. All three of my blood counts are low, but I am at a wait and watch stage currently. I have gained a great deal of information from the Marrowforum. You might want to register there as well and check some of the past posts and then ask further questions. There are a lot of people diagnosed with more experience and knowledge that are willing to share information. Jamrc

August 25, 2011 at 12:50 am #23315

bobweinberg
Member

Scooter, I was diagnosed with RARS at the age of 48 in 1998. I am now 61. Thirteen years and over 700 units of packed red blood cells later, I am still in one piece. The disease comes in all shapes and sizes so one cannot rely on the stories of others. Key indicators are percentage of blasts and chromosome abnormalities. Exjade is a miracle drug. You can reach me on line at weinbergr@pepperlaw.com if you would like to talk further.

Bob

August 27, 2011 at 12:33 am #23317

scooter
Member

Thanks, I’ll do that
Scott

September 13, 2011 at 4:48 pm #23330

frank
Participant

Scooter, I was diagnosed with RARS at age of 41 in 2004, havn’t try any new treatment yet, just transfusion right now.

September 14, 2011 at 12:13 am #23331

scooter
Member

Frank,
Do you have iron issues because of transfusions? My MD is pushing stem cell transplant. I get two units of red cells every other week. I just was diagnosed in July and I can’t stand all these doctor, hospital visits, and transfusions already.
Scuuter

September 23, 2011 at 4:11 pm #23336

frank
Participant

sorry scooter;
i didn’t read this thread for a while. I do have iron issue, just use Exjade. I am not bad like you, i will need 2 units for every 5-6 weeks.

Frank

October 7, 2011 at 3:21 pm #23366

lindajo
Member

I was diagnosed at age 30, 20 years ago. I had a number of transfusions early on and then my need for transfusions decreased. I haven’t had a transfusion in 2 years. Treating infections and other health problems are imperative in getting control of MDS. Learn all you can. There are options for treatment including watch and wait.
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