Several of us have been speaking privately about our myeloma treatment as provided by Kaiser Southern California. We thought it would be a good idea to hear from others of you more specifically about the level of care you think you are getting from Kaiser.
In your opinion:
(a) Among the 84 hematologists listed, who are the most knowledgeable about multiple myeloma?
(b) Has anyone asked KP to cover the cost of consultation with an outside multiple myeloma expert, and if so how was that request handled?
Please don't post libelous or slanderous statements, but let us know at which facilities you are or have been treated.
I have had a transplant at City of Hope for which I received excellent care, and am currently treated at Alton / Sand Canyon Irvine. Treatment is adequate, but I feel there is a lack of specialist knowledge and would like to consider alternatives.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Multiple Myeloma and Kaiser SoCal
My wife is being treated at Kaiser's Sunset complex in Los Angeles. She was diagnosed in September 2012 and had an auto SCT at City of Hope (Kaiser's transplant contractor in southern California) in February 2013. She is considered high risk due to having del(17p) and t(4;14) by FISH. She has never gotten to CR, but had a VGPR and has been stable at an M-spike of 0.6 g/L since transplant. She has remained on therapy, mostly 3-drug regimens including CyBorD and now VRd.
We have been happy with her treatment at Kaiser, but as far as I know there is no myeloma specialist among the many hematologists on their staff in this region. I agree with Carol that this is an issue. Consequently we have sought second opinions outside of Kaiser, as described below. Regarding the questions in Carol's post:
(a) I don't know much about the hematologists other than Dr Iman Abdalla, who has been treating my wife since diagnosis. We're quite happy with Dr Abdalla, but she treats patients with various blood cancers and she cannot be considered a myeloma expert. There are 12 doctors in the Hematology-Oncology department at the Sunset facility. There is also a separate team of 5 physicians in the Bone Marrow Transplant department who treat patients while undergoing transplant. Among them, Dr Firoozeh Sahebi seems to be the most knowledgeable about multiple myeloma. Dr Abdalla sometimes consults with Dr Sahebi. The transplant team also collaborates with doctors at City of Hope, although each Kaiser patient is cared for by a Kaiser doctor while there. The multiple myeloma expert at City of Hope is Dr Anrita Krishnan, but we have not had direct contact with her.
(b) We have not inquired about whether Kaiser would cover the cost of consultation with an outside expert, but we intend to do so, and I'm very interested in learning the experiences of others. My understanding is that it would at least require a referral from a Kaiser physician.
We have gotten two second opinion consultations at our own expense. The first was shortly after my wife's transplant and was with Dr Sikandar Alawadhi, then at University of Southern California. The second was a year later with Dr Joseph Mikhael at Mayo Clinic in Arizona. In each case, they concurred with the treatment my wife was getting.
We also investigated other institutions with well-known myeloma experts, including MD Anderson in Texas and Seattle Cancer Center. We found that doing this as a self-paying patient is messy. Although all the doctors and their institutions frequently provide second opinions and are happy to do so, in most cases the patient comes with insurance that is covering the cost. When I tell them that we'll pay directly, the institutions tend to classify us as uninsured and they treat us with great suspicion.
MD Anderson, for example, would provide no estimate of the expected cost but demanded a $7000 up-front deposit before they would schedule an appointment. We found those terms unacceptable. Mayo Clinic and USC were more reasonable, but they also wanted payment in advance. I emphasize that the difficulty here is with the institutions, not with the doctors; as far as I can tell, the doctors try to treat all patients the same.
Best wishes,
Larry
We have been happy with her treatment at Kaiser, but as far as I know there is no myeloma specialist among the many hematologists on their staff in this region. I agree with Carol that this is an issue. Consequently we have sought second opinions outside of Kaiser, as described below. Regarding the questions in Carol's post:
(a) I don't know much about the hematologists other than Dr Iman Abdalla, who has been treating my wife since diagnosis. We're quite happy with Dr Abdalla, but she treats patients with various blood cancers and she cannot be considered a myeloma expert. There are 12 doctors in the Hematology-Oncology department at the Sunset facility. There is also a separate team of 5 physicians in the Bone Marrow Transplant department who treat patients while undergoing transplant. Among them, Dr Firoozeh Sahebi seems to be the most knowledgeable about multiple myeloma. Dr Abdalla sometimes consults with Dr Sahebi. The transplant team also collaborates with doctors at City of Hope, although each Kaiser patient is cared for by a Kaiser doctor while there. The multiple myeloma expert at City of Hope is Dr Anrita Krishnan, but we have not had direct contact with her.
(b) We have not inquired about whether Kaiser would cover the cost of consultation with an outside expert, but we intend to do so, and I'm very interested in learning the experiences of others. My understanding is that it would at least require a referral from a Kaiser physician.
We have gotten two second opinion consultations at our own expense. The first was shortly after my wife's transplant and was with Dr Sikandar Alawadhi, then at University of Southern California. The second was a year later with Dr Joseph Mikhael at Mayo Clinic in Arizona. In each case, they concurred with the treatment my wife was getting.
We also investigated other institutions with well-known myeloma experts, including MD Anderson in Texas and Seattle Cancer Center. We found that doing this as a self-paying patient is messy. Although all the doctors and their institutions frequently provide second opinions and are happy to do so, in most cases the patient comes with insurance that is covering the cost. When I tell them that we'll pay directly, the institutions tend to classify us as uninsured and they treat us with great suspicion.
MD Anderson, for example, would provide no estimate of the expected cost but demanded a $7000 up-front deposit before they would schedule an appointment. We found those terms unacceptable. Mayo Clinic and USC were more reasonable, but they also wanted payment in advance. I emphasize that the difficulty here is with the institutions, not with the doctors; as far as I can tell, the doctors try to treat all patients the same.
Best wishes,
Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
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