MDS/myelodysplastic syndrome

5 Posts | Page(s): 1 

MDS/myelodysplastic syndrome

by Carolyn_M on Sun Feb 23, 2003 12:00 AM

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I can't find any information at this site on MDS, anyone out there suffer with this diease? I am trying to get a handle on this as I lost my husband of 30 years in 2000 to lung cancer and in 2003 my mother to the same diease. So as I try to decide what steps to take I am trying to get any and all information I can from any and all areas, professional and personal. Thanks to all and keep a good thought. Carol

RE: MDS/myelodysplastic syndrome

by Lori_M_2 on Thu Feb 27, 2003 12:00 AM

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Hello Carol, My mother is in her first relapse with Leukemia (AML). The doctors believe that this is what she had in the beginning. The cancer.gov site has been extremely helpful to me in my research for everything. I do encourage you to ask and keep asking questions. I have included the link for it and you should be able to find a substantial amount of information on this site. Please feel free to send me a message with any questions and I will do my best to guide you in the right direction, as I am knee deep in it. Best of luck to you and your mom. Lori M.

RE: RE: MDS/myelodysplastic syndrome

by Lori_M_2 on Thu Feb 27, 2003 12:00 AM

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Me again, I just re-read your message. I didn't read it correctly about your mom. I am so sorry about both your husband and mother. Again, I am sorry. Contact me if you would like. Lori M.

Here's a Site

by Marixyz on Mon Oct 23, 2006 12:00 AM

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http://www.aamds.org/aplastic/ So far, this seems to be a good site for information and reference... My dad was just diagnosed with MDS and I am clueless, so perhaps we can help each other figure out what it is, how we can help, and what the prognosis is. Hard seeing my dad, who has always been as energetic as a horse, tired all the time. He starts treatment today, and I'm hoping he will respond wonderfully. I still believe we can help ourselves.

RE: Here's a Site

by luvzepln on Sat Mar 08, 2008 12:00 AM

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Thanks to allf or putting info out there! I feel like I am the only one that is capable of finding out what is out there regarding MDS. My mom was just diagnosed and her sister died of this 12 years ago. I have been trying to find out anything and everything I can also, like the other lady that has been diagnosed. Everyone is looking to me for info because they know I will find it. Problem is, I still have questions that I cant find the answer to and it feels as tho the Dr. is inaccessable until the next appt. in 6 weeks. I dont want to wait that long! I want answers asap! I am sure that everyone feels that way! But I cant just sit and wait for 6 weeks, so I keep seearching...Maybe someone can answer my Q's here...I want to know why we have to wait for her hemoglobin to go from 10 to 8 before we can start transfusions, that is the biggest one. and why couldnt I get the Dr. to give a prognosis of time? I found on the internet that the version my mom has it says 3.5 years, but from when? I am so frustrated and no one has any answers, so I keep searching. Thanks for letting me vent! Hopefully we can all work together to get answers for each other!

Debbie

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