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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Myeloma specialists in Los Angeles / San Francisco areas?

by Alex M on Wed Jun 25, 2014 12:18 am

What are the best hem/onc docs for the diagnosis and treatment of multiple myeloma in San Francisco, Los Angeles and Santa Barbara, California?

Is there a list of the recognized superdocs for the diagnosis and treatment of multiple myeloma?

Alex M
Name: Alex M
Who do you know with myeloma?: No one

Re: Myeloma specialists in Los Angeles / San Francisco areas

by Guest1 on Wed Jun 25, 2014 12:49 am

Hi Alex,

A great place to start is here on The Myeloma Beacon's homepage, where there is a link to a directory of multiple myeloma treatment centers. You also can get to the list be clicking "Resources" at the top of the page, then "Directory of Treatment Centers" under "Patient and Caregiver Help Center" (towards the bottom of the Resources page). You will find a very helpful directory, alphabetized by state.

Until more knowledgeable posters reply to you with specific suggestions, doctors/hospitals often mentioned regarding the areas you ask about include: Cedars-Sinai, City of Hope, Dr. James Berenson and others (L.A. area). In Northern California, UCSF and Stanford University are often noted here, among many others as well.

I am new to using forums in general but am certain you will find informed, compassionate and helpful responses from many wonderful people here on The Myeloma Beacon.

Hope this helps a little.

Guest1

Re: Myeloma specialists in Los Angeles / San Francisco areas

by Beacon Staff on Wed Jun 25, 2014 2:55 am

Hi Alex,

Guest1 provides some useful feedback and also mentions specialists and treatment centers that we believe most other members of the forum probably would mention as well (in terms of what is relevant to the geographic area you've asked about).

You also may find this list of the members of the International Myeloma Working Group (IMWG) helpful.

Beacon Staff

Re: Myeloma specialists in Los Angeles / San Francisco areas

by Castaway on Wed Jun 25, 2014 9:30 pm

HI Alex,

I have to say that ,due to insurance reasons, I could not go to the City Of Hope as my first choice, as it turned out my oncologist works with several oncologists at USC and their transplant team. Several patients of his with multiple myeloma have gone there.

What I did was post on the Beacon about USC and has anyone gone there. I did get a reply from an individual that had a transplant there and he actually gave me his phone number. I did call him and he told me about the whole process and how he recommended them highly. As it turned out, my oncologist works with the same doctor as the person I met on the forum. So I will be seeing her in a few days.

Insurance does play into it and everything has to be pre-approved. My oncologist at first told me the choice would be mine, but he recommended four different hospitals. His first would be USC. Stanford was another. All the hospitals are about 200 miles from where I live. Personally I did not have a choice, as it turned out my insurance only contracts with USC for out of area. If I had a higher level insurance I might have been able to go elsewhere.

I shouldn't complain too much about my insurance as i only pay $20.00 for my 21 days of Revlimid. If insurance allows you to go where you want, I would also suggest calling the hospitals that you choose and ask them for information on their hospital and multiple myeloma treatment. USC actually sent me a very nice binder with all their doctors, the transplant types, procedures and even hotels in the area. That was before I even knew I was going there.

Good Luck on your search,
George

Castaway
Name: George
Who do you know with myeloma?: just myself
When were you/they diagnosed?: 1/24/14
Age at diagnosis: 62

Re: Myeloma specialists in Los Angeles / San Francisco areas

by coop223 on Sun Jun 29, 2014 2:46 pm

USC. Dr. Ann Mohrbacher. Top notch, highly recommended. I was the one that referred George. Send me a personal messge and I'll give you my # if you'd like.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Myeloma specialists in Los Angeles / San Francisco areas

by Anonymous on Mon Jun 30, 2014 1:48 am

Hi,

I guess I'm "Guest1" who tried responding last Wednesday regarding specialists/centers in California. Thank you, Beacon Staff, for your helpful editing to my attempt and your links to Beacon Medical Advisors and IMWG members. And my apologies to everyone for leaving out USC. I'm originally from Los Angeles and would go to top-notch USC Norris in a heartbeat for treatment. I had never posted anything on a forum before and just spaced while trying to figure out the process.

Best wishes to all, and thank you Myeloma Beacon for providing this priceless site.

Anonymous

Re: Myeloma specialists in Los Angeles / San Francisco areas

by dnalex on Mon Jun 30, 2014 2:17 am

Hello,

Instead of seeking to be treated with the "super myeloma docs," I would focus on going to a place that specializes in the treatment of myeloma, and not worry quite so much as to which specific doctor you may get. I say this because sometimes getting a super doc means that you will be seeing this person's assistant(s) and not so much the person him/herself.

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56

Re: Myeloma specialists in Los Angeles / San Francisco areas

by coop223 on Mon Jun 30, 2014 3:15 pm

Her specialty is multiple myeloma. And you do see her, not an assistant. I live 300 miles round trip.

She's the most compassionate, knowledgeable doctor I've ever had. I'm three years into being able to have this disease in check thanks to her and her expertise, not her assistants. I wouldn't want any other doctor.

Do what you want but I highly recommend her. I trust her with my life.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Myeloma specialists in Los Angeles / San Francisco areas

by Sarah123 on Sun Mar 06, 2016 4:10 pm

The Kaiser hematologist/ oncologist who has been following me for 16 years for IgM MGUS is blowing off my three recent spinal compression fractures, six recent serious infections, gut dysmotility, vision problems, recurrent skin cancers and peripheral neuropathy. (Prior to this all happening one year ago, I was happy and healthy, doing aerobics, strength training, zumba, etc.)

I am seeing another Kaiser non-specialist tomorrow, but in anticipation of hearing the same blah, blah, blah, I am proactively trying to find a specialist in the Los Angeles / Orange County area.

Anyone have any ideas?

I have been told I will have to pay cash to go outside Kaiser.

Sarah123

Re: Myeloma specialists in Los Angeles / San Francisco areas

by Multibilly on Sun Mar 06, 2016 7:07 pm

Hi Sarah,

I'm a die hard fan of Dr. James Berenson in West Hollywood. While I live in Colorado, he is the specialist I go to for anything other than routine monitoring.

While I am not currently being treated and I live in Colorado, Dr. B is more than happy to work with my local Colorado onc to direct any treatments that may be required in the future. You might be able to set up a similar approach with a Kaiser onc and Dr. B to minimize any out-of-network expenses? He also accepts some forms of Kaiser insurance.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

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