[melissaanne]

No in-state multiple myeloma specialists

by melissaanne on Thu Oct 01, 2015 4:16 pm

Hello all,

I previously posted an introduction in the new member forum, but I wanted to jump on here and throw out a question.

My mother was recently diagnosed with a plasmacytoma on her T7 vertebrae. Emergency surgery for resection and spine stabilization was performed. Pathology was conclusive of a plasmacytoma (solitary or multiple myeloma pending further tests). So far, her lab values have been promising.

Regardless, I would like her to be under the care of a myeloma specialist. She lives in Anchorage, Alaska and there are currently no specialists in the state. Most patients are sent down to SCCA in Seattle. I, however, live in Denver, Colorado and have access to wonderful myeloma specialists.

Is it unheard of to see a specialist on behalf of my mother? I just want to gain as much information as possible for her. Would they see me? I have to be listed as her "medical advocate" in that I am able to retrieve medical information on her behalf. Going out of state for her is quite taxing as she's recovering from surgery, has two school-aged children, and not in the best financial position following all of these tests / hospitalization.

I also remember reading that it's possible for specialists to review emailed patients' lab work and give his opinion. I'm curious if that rings a bell with anyone..

Any advice?? Thanks!

[kerrirunnergirl]

Re: No in-state multiple myeloma specialists

by kerrirunnergirl on Thu Oct 01, 2015 6:12 pm

Hi Melissaanne,

So sorry to hear about your mom. When my husband was first diagnosed I researched getting a second opinion. I looked on line to Dana Farber in Boston.. There is a tab on their website for second opinions. They will look at labs and test values and give their treatment and diagnosis opinions. The cost is $575.00 but it's cheaper then going there. I never used it because I found a specialist within an hour.

I'm sure this service is also available at other institutions. Just check this list of myeloma treat­ment centers, and go to the websites of the different treatment centers.

Wish you and your mom the best,

Kerri

[melissaanne]

Re: No in-state multiple myeloma specialists

by melissaanne on Thu Oct 01, 2015 7:51 pm

That's wonderful! I had no idea that service was available! Thank you for the information! I'm going to look into that

[JudyT]

Re: No in-state multiple myeloma specialists

by JudyT on Tue Oct 20, 2015 7:02 pm

Can you tell me the name of the specialist in Denver? My brother, living in Arvada, found out this morning that he is experiencing a recurrence. I googled specialists in Denver and could not find any names, so would appreciate the benefit of your research.

Thanks.

[melissaanne]

Re: No in-state multiple myeloma specialists

by melissaanne on Wed Oct 21, 2015 3:17 pm

Hello, JudyT-
Colorado Blood Cancer Institute has several physicians who specialize in and treat this disease.
I have listed their names below:

Scott I. Bearman M.D.
Mark W. Brunvand M.D.
Tara K. Gregory M.D.
Michael B. Maris M.D.
Jeffrey V. Matous M.D.
Peter A. McSweeney M.D.
Richard A. Nash M.D.

I hope this help and good luck to your brother!

[Multibilly]

Re: No in-state multiple myeloma specialists

by Multibilly on Wed Oct 21, 2015 6:05 pm

JudyT,

In Denver, you also have:

University of Colorado Blood Cancer & BMT Program: Dr. Clay Smith is the program director

The CBCI and UC facilities are transplant centers and their doctors are transplant-centric in their treatment approaches (at least that was my experience when I visited with the doctors at these facilities and went to one of their support groups). So, if transplant is your brother's cup of tea, then those facilities are probably good choices. 2-3 of the CBCI docs came out of the SCCA program.

Contact Info can be found here:

https://myelomabeacon.org/resources/treatment-centers/#Colorado

Then there are also some hematololgists/onclogists within the Rocky Mountain Cancer Center network that have a reasonably good amount of knowledge about multiple myeloma, but are not multiple myeloma specialists per se. This is the group I use for routine monitoring purposes. However, I go out-of-state for an occasional visit to a multiple myeloma specialist as I am not of the transplant persuasion.

So, the choices all really depend on what kind of treatment options one is open to.