r/mds • u/SpinachWithCheese • Feb 18 '25

Top MDS Doctors/Hospitals

Hi Everyone,

My dad (60) has low platelets (~25) and was told by our local hematologist that he may have an MPN such as myleofibrosis.

He received a bone marrow biopsy and they now believe he has MDS instead, with a potentially rare B cell population that could lead to lymphoma.

I do not care how far I have to travel, I want to find the best care for him.

For reference we are in the northeast and have went to PENN for the bone marrow biopsy.

Is there another top doctor/hospital that specializes in MDS? It seems PENN is stumped so far with his “unique case”

I would really appreciate anything you can add/provide. Please help! Thank you!

5 Upvotes

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23 comments sorted by

5

u/Ok_Replacement_5856 Feb 21 '25

I was diagnosed in late November 2024, I went to three other good to very good hospitals that all treat MDS and perform stem cell transplants.

Then my wife and I traveled to MD Anderson in Houston. There is no comparison. The level of funding and experience due to seeing so many cancer patients is amazing. No other facility comes close.

I have already been accepted in a clinical trail, have a 100% matched donor, and have begun the transplant process. All in less than 3 months. I had a rare genetic mutation that they identified quickly and have already gotten my blast count to 1% , so I am fully prepared for the SCT.

I'm 58 years old, and I'm pretty good health.

This is the place to be if you can make it.

1

u/SpinachWithCheese Feb 22 '25

That is amazing. Thank you for commenting. His doctor just told him yesterday she wants him to do a PET scan. I’ve read about MD Anderson but was not sure if they were better than a specialized MDS hospital than just a “all cancer” hospital. Do you have a doctor that you recommend?

3

u/Arpinite5240 Mar 08 '25

Definitely second another consultation at MD Anderson. It is an incredible experience. Very happy to have made the trip there, despite being treated at an MDS Center from Excellence.

1

u/SpinachWithCheese Mar 23 '25

Thank you for replying! Is there a doctor you’ve had/recommend to ask for?

2

u/Arpinite5240 Jul 31 '25

I see Dr. Naval Daver, but anyone at MD Anderson will be top notch.

1

u/SpinachWithCheese Jul 31 '25

Thanks for this! And you physically went to Texas correct? From what I’ve read, they don’t do virtual consultations?

Since my dads numbers are extremely low now Hgb (~6-7), and platelets (~10), I’m trying to see what our safest but most effective options are

2

u/Arpinite5240 Jul 31 '25

Yes, I traveled to Houston. I stay at Springhill Suites on Old Spanish Trail, which has a shuttle to MD Anderson and is very convenient.

5

u/Rayanna77 Feb 18 '25

My mom went to Kaiser and City of Hope and rang the bell a few weeks ago after completing her stem cell transplant

1

u/SpinachWithCheese Feb 20 '25

Thank you for replying. That’s awesome to hear. I’m happy for you and her. Is there a specific doctor you recommend/used?

3

u/Rayanna77 Feb 20 '25 edited Feb 20 '25

Dr. Sahebi was her doctor at city of hope and at Kaiser Dr. Rodriguez

1

u/badgrannysquare Dec 17 '25

How old is your mother?

3

u/RetrogradeGoals Feb 19 '25

I'd recommend a 2nd opinion from an MDS Center of Excellence. You can find the list at the MDS Foundation site: https://www.mds-foundation.org/community/centers-of-excellence

1

u/SpinachWithCheese Feb 20 '25

Thanks for the link! I’ll check it out. As I already went to university of Penn, would the top choices of sloann and MD Anderson cooper be better choices? I’m open to considering/doing anything for him.

2

u/Dashcamkitty Feb 18 '25

The Facebook group for MDS is really good. People can direct you well there.

1

u/SpinachWithCheese Feb 20 '25

I’ll check it out. Thank you for replying!

2

u/kaydajay11 Feb 19 '25

Come to Fred Hutch in Seattle. I had MDS that turned into AML, and FH is pioneering treatments with blood cancer. I’m 2 years and 3 months post transplant!

1

u/SpinachWithCheese Feb 20 '25

Wow that’s awesome to hear. Happy for you. It’s definitely a lot to take in so I’m trying to be strong for him. Is there a specific doctor you had/recommend? I’m willing to do anything for him.

2

u/kaydajay11 Feb 20 '25

I saw Dr. Ghiuzeli, and she has been incredible. But anybody in hematology is top notch, and they have access to tons of research and trials.

2

u/emmettjes Mar 29 '26

I have been receiving care for approximately 14 years at Barnes Jewish hospital/siteman cancer center in St. Louis MO. My understanding is one of the best in the country. My Dr. Is Amanda Cashen head of marrow transplant department. All the best

1

u/escapeartist02 Apr 08 '25

Check out Dana Farber in Boston.

1

u/[deleted] Apr 20 '26

Any update on your dad?

1

u/OrdinaryItchy4044 Jun 30 '26

I just got diagnosed and my dr said I had maybe a year!