I realize it is not only the doctor's expertise but the efficiency of the entire medical and office staff that contributes to good care. I will be changing insurance in the near future and can then choose a multiple myeloma specialist. Given those parameters, does anyone have a suggestion as to who i should see?.
I live in north county San Diego. I can get to Orange County within an hour and Los Angeles in two hours. City o f Hope is 2 1/2 hours away, but that would be a stretch if and when I need treatment.. Presently, I am looking for a good evaluation and follow up care.
Thanks for your input.
Toridon
Forums
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Multiple myeloma specialist in southern California?
How far is West Hollywood?
James Berenson is considered a leading expert in the field of multiple myeloma.
You also may want to check out University of California - San Diego (UCSD) in La Jolla. It has the Moores Cancer Institute, which is an NCI desiginated comprehensive cancer center.
James Berenson is considered a leading expert in the field of multiple myeloma.
You also may want to check out University of California - San Diego (UCSD) in La Jolla. It has the Moores Cancer Institute, which is an NCI desiginated comprehensive cancer center.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Multiple myeloma specialist in southern California?
West Hollywood is about two hours. Thanks for the Moore's Cancer Center suggestion. Do you know of anyone there specializing in multiple myeloma?
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Multiple myeloma specialist in southern California?
You might want to try Ewa Carrier at Moores. She does a lot of work with multiple myeloma community. Stem cell transplants are her passion, but she is likely an excellent resource.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Multiple myeloma specialist in southern California?
Just a very belated thank you for the referral of Dr. Berenson. I've been seeing him every two to three months since last June. I found a wonderful local oncologist who works hand-in-hand with Dr Berenson's recommended protocol. Treatments are going fine and I am getting excellent results. Again, a big thank you .
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Multiple myeloma specialist in southern California?
I am currently a patient at UCSD Moore's Cancer Center, as it is 10 minutes from work. Treatment resources and support there are first class. It is La Jolla after all. But there are no significant multiple myeloma trials there. AND they are hell-bent on pushing transplants – it is their passion – and my upstart physician does not like to adjust treatment protocols, adhering to the philosophy that so long as I am tolerating the meds, even with side effects, why change it? This is traditional clinical medicine – nothing meritorious about it. And I am rejecting his arrogant approach.
So I too recently saw Berenson (only an hour and a half from my house). He is great, and will, like Tori, be working with a local oncologist who will follow his low-toxicity, long-term treatment philosophy. This includes lowering the dose of Revlimid and switching from dex to a different steroid. This gives me much normalcy and control, especially as I want a long-term, low-tox perspective that keeps me in the game for curative treatments – which will be here within 10 years, maybe even 5.
So I too recently saw Berenson (only an hour and a half from my house). He is great, and will, like Tori, be working with a local oncologist who will follow his low-toxicity, long-term treatment philosophy. This includes lowering the dose of Revlimid and switching from dex to a different steroid. This gives me much normalcy and control, especially as I want a long-term, low-tox perspective that keeps me in the game for curative treatments – which will be here within 10 years, maybe even 5.
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Dan D
Re: Multiple myeloma specialist in southern California?
Tori. Can you tell me your local oncologist is?
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Dan D
Re: Multiple myeloma specialist in southern California?
I see Dr. Sinclair, who is head of the cancer department of Scripps, and he works out of La Jolla. I met him years ago and vowed if I ever needed an oncologist, he would be the man. I love him as he is a doctor with compassion and empathy and no ego. He is concerned about the overall beings of his patients and not just a lab report reader. He doesn't push any protocol but works with what his patient wants. I can't speak highly enough for Dr. Berenson and Dr. Sinclair.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Multiple myeloma specialist in southern California?
I live 150 miles away from Los Angeles and go to USC Keck Cancer Center and see Dr. Anne Mohrbacher, who specializes in multiple myeloma. The center takes my insurance and Dr. Mohrbacher is great, as is the whole staff.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Multiple myeloma specialist in southern California?
Thank you very much Tori for that referral information. I have heard good things about Sinclair, and his Encinitas office is less than a mile from my home in North County. Dr. Berenson also mentioned another person from that office - Laurie Frakes - whom I am considering as well - although I do not know much about her.
A year and a half ago, I met with another oncologist at the Encinitas office who some patients really like, but I was dissuaded by his proclamation that he treats only "the disease" and not "the patient" and indeed "doesn't read" about current research into the disease. This approach strikes me as outdated - if not reckless - in today's multiple myeloma era, which recognizes many forms of the disease and affords many therapeutic options. To prescribe (without careful consideration) many cycles of Velcade, Revlimid, and dexamethasone followed by an autologous stem cell transplant is unacceptable to me, yet so many doctors do just that.
Again, I really was pleasantly surprised by how down-to-earth and nice Berenson was. Perhaps I am am being naiive, but he left me optimistic and I embrace his philosophy of "do no harm" - which means a lot, given that he once eagerly embraced stem cell transplants, but eventually came to reject then, recognizing that they generally do not help, and, in fact, can devastate the supporting cells for the bone marrow.
A year and a half ago, I met with another oncologist at the Encinitas office who some patients really like, but I was dissuaded by his proclamation that he treats only "the disease" and not "the patient" and indeed "doesn't read" about current research into the disease. This approach strikes me as outdated - if not reckless - in today's multiple myeloma era, which recognizes many forms of the disease and affords many therapeutic options. To prescribe (without careful consideration) many cycles of Velcade, Revlimid, and dexamethasone followed by an autologous stem cell transplant is unacceptable to me, yet so many doctors do just that.
Again, I really was pleasantly surprised by how down-to-earth and nice Berenson was. Perhaps I am am being naiive, but he left me optimistic and I embrace his philosophy of "do no harm" - which means a lot, given that he once eagerly embraced stem cell transplants, but eventually came to reject then, recognizing that they generally do not help, and, in fact, can devastate the supporting cells for the bone marrow.
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Dan D
13 posts
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