Need help with RCMD treatment (trials)

[Mantist]

Hi,

I am trying to help a friend (74 year old) with RCMD for 3 years to seek medical treatment preferably in Southern California. She resides in China. Where do I begin? Thanks in advance..

[Birgitta-A]

Hi Mantist,
Here are clinics i California from the list from Marrowforums:
California:

Cedars-Sinai Medical Center, Samuel Oschin Comprehensive Cancer Institute MDS Foundation Center of Excellence

City of Hope National Medical Center NCI Comprehensive Cancer Center MDS Foundation Center of Excellence

Stanford University Medical Center MDS Foundation Center of Excellence

University of California, Irvine, Chao Family Comprehensive Cancer Center NCI Comprehensive Cancer Center

University of California, Los Angeles, Jonsson Comprehensive Cancer Center NCI Comprehensive Cancer Center MDS Foundation Center of Excellence

University of California, San Diego, Rebecca and John Moores Cancer Center NCI Comprehensive Cancer Center

University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center NCI Comprehensive Cancer Center

University of Southern California, USC/Norris Comprehensive Cancer Center NCI Comprehensive Cancer Center MDS Foundation Center of Excellence

Good luck!
Kind regards
Birgitta-A

[Mantist]

Thanks Birgitta-A..

I was asked who is the best from the list. How do I find out who has the higher ranking or better track record interms of treatment and successful rate?

[Neil Cuadra]

Mantist,

Everyone has their favorites.

One way is to review hospitals is to check which of them do bone marrow transplants for MDS. Even if your friend isn't a transplant candidate, the centers that do transplants have expertise in the disease. The National Marrow Donor Program website lets you search by state and disease.

http://bethematch.org/For-Patients-a...plant-centers/


You can also look up how many transplants they do for MDS:

http://bethematch.org/For-Patients-a...isease-charts/

http://bethematch.org/For-Patients-a...er-statistics/

[Mantist]

Thanks Neil.

I will try UCLA, City of Hope, and Chao family.

[Mantist]

Update

City of Hope reviewed my friend's medical records and does not recommend treatment here.

Anyone with stem cell treatment / experience regarding MDS?

[Neil Cuadra]

Did they explain why they don't recommend treatment at City of Hope?

[Mantist]

They think current treatment in China is proper - continue treatment and wait. Further investigative treatment here may shorten life expectancy.

[Neil Cuadra]

Mantist,

I'm glad she's getting treatment. It will probably be hard if not impossible to find useful comparisons of the current treatment in China and what would be done in California, although there may be anecdotal stories form individual patients.

What matters is if her treatment is having the desired results. It's definitely a tradeoff to uproot yourself and switch treatment centers, treatment approaches, and deal with cultural differences. And of course the potential rewards come with many potential risks.

As a friend you can still pass along information about the choices in California.

[Mantist]

Thanks Neil..

I have informed my friend about the various institutions / treatments along with COH recommendations. It is up to her to switch over to Southern California to continue current treatments.