New Member Wants ADvice

[Maryh]

Hi Everyone -

i am here because my Mom age 77 was just diagnosed with low rsk MDS. According to her hematologist, her only problem right now is low platelets which are around 30,000. The doctor and my Mom do not appear concerned, but I am concerned and really want to get educated, especially after my internet research. Mom is very healthy right now for her age. I am in Los Angeles and my parents live in Boston. Any advice?

[Birgitta-A]

Hi Maryh,
You know with platelets around 30 000 most patients manage well except that we get bruises. My platelets have been as low as 30 000 without any symptoms (last count 50 000).

In any case you should be very careful about all your mothers drugs and her food. There are a lot of drugs and food that decreases platelets and increase bleeding. I have sent these warnings several times before but they can´t be read to often.
http://www.pdsa.org/itp-information/itp-warnings.html
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen for low platelets, asymptomatic

[Neil Cuadra]

Maryh,

Did your mom have a bone marrow biopsy? That's the usual way to determine a diagnosis of MDS.

Every MDS treatment has risks, so "wait and watch" isn't necessarily the wrong tactic, especially for someone in their 70s. If you aren't confident in her doctor's advice, you could encourage her to get a second opinion.

I assume that your mom will have regular CBC (complete blood count) tests to watch for changes in her platelets or other counts. She can ask for copies of the results, and you can follow her counts over time.

I don't know you and your mom of course, but I know that some people want to shield their family members, even their adult children, from a frightening diagnosis, so she may be more concerned than she lets on. Every family has its own dynamics, but I hope she'll accept your help and understand your justifiable concern. For example, if you share what you learn about living with low platelets, I hope she'll follow your advice.

You and your mom should both read the free materials about MDS that you can get from the Aplastic Anemia & MDS International Foundation. You might also consider whether you and/or she should attend the Patient & Family Conference coming up in July in Indiana. There you'd be able to meet other patients and hear from MDS experts in person.

[Maryh]

Hi Neil -

Thank you so much for the advice. I will also check out the links you sent. I appreciate it.

I definitely hear you. It's hard to say if my Mom is protecting us, but that would certainly not surprise me and explain a lot.

I will let you know what I find out. What is your situation?

Best,
Mary

[Neil Cuadra]

Originally Posted by Maryh

I will let you know what I find out.

Yes, please keep us posted.

What is your situation?

My wife had MDS (although her original diagnosis was aplastic anemia) and was cured by a bone marrow transplant from an unrelated donor. Her donor was anonymous at the time of the transplant, but we later met the wonderful woman who donated marrow to save the life of a stranger.

Getting a second chance like that gave both my wife and me a much greater appreciation of life and of the medical professionals and friends and family who helped us get through it all. We learned that information is the key for patients to help themselves. Sharing what we know with other patients and caregivers is our way of paying back the community for the support we got.

[Maryh]

Hey Neil

That is so great! Wow! Congrats you guys!

BTW in doing my beginning research and hearing of so many people in need, I myself have been thinking that I should donate marrow. What does it involve? I would like to help in any way I can.

Mary

[Neil Cuadra]

Originally Posted by Maryh

BTW in doing my beginning research and hearing of so many people in need, I myself have been thinking that I should donate marrow. What does it involve? I would like to help in any way I can.

I posted some information about it here and you can get the first-hand information from the National Marrow Donor Program. Basically, you sign up for the registry and wait to hear if somebody who matches you needs a transplant from your marrow or stem cells. Most of us never get called to donate, but the more people who join, the more will get a phone call saying they've been matched to a patient in need.