[tm648]

Second Opinion Options

by tm648 on Mon Jun 03, 2013 9:33 am

Hello Everyone. I’ve been diagnosed with SMM by my local oncologist and would like to have a second opinion. From my research so far, Johns Hopkins, Sloan Kettering, Dana Farber, and Mayo-Minnesota seem like the best candidates. Since I live in the Northern Virginia area, Hopkins would be the most convenient, but I am willing to travel if that would be medically the best thing to do. Have any of you had any experiences at any of these sites, and/or do you have any recommendations as to which, if any, of these would be the best alternative? Thank you in advance.

[GaryP]

Re: Second Opinion Options

by GaryP on Mon Jun 03, 2013 3:11 pm

I congratulate you for recognizing that your local oncologist is not a "myeloma expert", and thereby being your own best advocate and looking to find a second opinion from an expert. All of your selections are great, and you might want to consider UAMS in Little Rock, John Theurer in Hackensack, Dana Farber in Boston, and Medical College of Wisconsin in Milwaukee. All have evidence of excellent life expectance and survival rates. However, if high risk myeloma UAMS and Mayo Phoenix may be two great options. No one has yet unlocked the key to high risk myeloma, however these are the two that have a focus of research on high risk myeloma. Good luck and may God Bless your myeloma journey. Gary

[cjoem62]

Re: Second Opinion Options

by cjoem62 on Mon Jun 03, 2013 4:36 pm

Thanks tm648... I was going to ask the exact same question!

I am a 50 year old Canadian diagnosed with uncomplicated multiple myeloma in late 2011, treated with CyBorD and ASCT in 2012 and presently stable (apparently). I am considering checking myself into a US clinic for a second independent opinion, especially regarding ongoing and future treatment options. I am leaning towards UAMS and for no other reason than it was the first multiple myeloma focussed clinic I heard of.

I would appreciate hearing an opinion from anybody with first hand experience at UAMS (or any multiple myeloma focussed US clinic for that matter...)

Regards to all...

[Christa's Mom]

Re: Second Opinion Options

by Christa's Mom on Mon Jun 03, 2013 4:45 pm

Hi tm648,

EJ and I are also located in Northern Virginia! EJ is being treated at Virginia Cancer Specialists. We did go and get a second opinion at Dana Farber -- mostly because it is an easy shuttle ride, and we have family in Boston, which would make it easier to get treatment there if we ever decided to go that route.

Have you ever considered going to NIH? If you search the Beacon Forums you will find a lot of information on Dr. Landgren's team at NIH, and the research they are doing specifically on smoldering myeloma.

Hope that helps!

Lyn