Recommendations needed - MDS specialist / clinic

[ksusweep]

My dad was recently diagnosed with MDS - RAEB-II.

Does anyone on this forum has any recommendations on the best MDS specialists / clinics for us to consider? Especially near the San Jose / Seattle / San Diego area?

[Neil Cuadra]

The Rebecca and John Moores Cancer Center at U.C. San Diego is a Comprehensive Cancer Center as designated by the National Cancer Insitute. See their Leukemia and Lymphoma Unit page.

In Seattle you can't do better than the Fred Hutchinson Cancer Research Center, also a Comprehensive Cancer Center. See their MDS Overview page.

[ksusweep]

Thanks! Any recommendations for the San Jose area? That's where he is currently at.

He is about to receive his initial treatment of Vidaza next week, and we are wondering if that is the best option available and would like to seek out an authoritative 2nd opinion.

[Hopeful]

Dr Jason Gotlib at Stanford is excellent.

[Neil Cuadra]

Originally Posted by Hopeful

Dr Jason Gotlib at Stanford is excellent.

And a little further north, the Helen Diller Family Comprehensive Cancer Center at UCSF. Dr.

[lauras]

Best of luck to you guys. Dr. Ronald Hoffman in NYC along with Dr. Tefferi at the Mayo are the 2 leading doctors on MDS in the country. We live in D.C. and go to New York to see Dr. Hoffman. He sees patients only on Tuesday as he is doing research the reaminder of the days. He's wonderful. I'm sorry I don't know anybody on the west coast!

[ksusweep]

We were referred to Dr. Gotlib for 2nd opinion. Having someone from this forum recommending Dr. Gotlib certainly give us the reassurance we need.

Thanks to everyone to your replies.

[navn29]

My 32 year old brother was diagnosed as MPN-UC abt 8 months ago. he is taking hydroxyurea twice daily. He has become dependent on blood transfusions (once every 10 days). Even n-RBC's are seen in his peirpheral blood. Which is the best facility in d world for his treatment. We are from INDIA.

[Neil Cuadra]

navn29,

This page has a good explanation of Myelodysplastic/Myeloproliferative Neoplasm, Unclassifiable.

Since hydroxyurea hasn't let your brother become transfusion independent, it doesn't sound like a long-term solution, and your brother is much too young to be on only supportive care. Have his doctors mentioned the possibility of a stem cell transplant? Where he could be treated may depend on that possibility.

Because MPN-UC is rare, it's hard to find experts. I suggest that you use the NCI Clinical Trial search page to look for trials for myeloproliferative disorders. Click "In City/State/Country" to limit the trial location to centers in India (or any other country your brother might go to for treatment). Even if you don't find a trial that suits your brother, you can display the Trial Site information and learn which hospitals or research centers are running the trials. Those centers are likely to have doctors with expertise in treating MPN.

[navn29]

dear Neil,
Thanx a tonn for being a help...its a relief. D docs hv advised us a allogenic unrelated donor transplant. I hv also searched NCI website fr trials...der r none in INDIA or around. Is M D Andersson d best in USA??
We are very scared. He is too young fr all dis. He has a very young family....his son is jus 4 yrs old....I don't knw how to handle my parents and his family....wish der was a way out!!!

[Neil Cuadra]

When I search the NCI Clinical Trials, set Cancer Type/Condition to "Myelodysplastic/myeloproliferative diseases", and set Stage/Subtype to "myelodysplastic/myeloproliferative neoplasm, unclassifiable" I find 4 trials. None of them are specifically for MPN-UC but they each list hospitals or research centers.

I don't know of particular centers in the U.S. that are known for treating MPN-UC but there are many excellent centers for the various types of bone marrow failure diseases. Depending on how you measure them, M.D. Anderson is definitely one of the top U.S. treatment centers for cancer in general. Here is one report ranking them #1. If your brother can come to the U.S. for treatment he should go to a center that's on the list of comprehensive cancer centers as determined by the National Cancer Institute.

Have they searched for a matching stem cell transplant donor yet? If he's going to get a transplant then your criteria for finding a treatment center probably changes, because if he's getting drug treatments then you want a doctor who knows a lot about his disease while if he's getting a transplant then he'll want one of the best transplant centers, which are generally the centers that do a lot of transplants. Here is information about selecting a transplant center. The statistics and lists are for U.S. centers but the same guidelines apply in India.

[navn29]

Though I already knew bout d list, still it was a help as it reaffirmed my assertins..thnx a lot.I mus say dis forum iz gr8 as it gives me a lot of exposure.ITz indeed a gr8 platform fr discussion and givin a vent to one's feelings. Can u gv me some info regarding what expenditure to expect( atleast some hints) as I hv nvr been to USA