I am newly diagnosed and live in the mid-Atlantic. I am symptomatic and need to choose a doctor and treatment center quickly.
I live within driving distance of Duke, UNC-Chapel Hill, the Levine Center in Charlotte, and VCU in Richmond. Could I expect the same or similar level of care at these centers that I could at Dana-Farber or Mayo in Rochester?
A stem cell transplant would be easier if done in North Carolina, but could I expect the same results there that I would get at one of the larger centers (where more stem cell transplants have been done)?
How important is it to be seen quickly by someone at one of these smaller centers or wait 4-6 weeks to see a myeloma doctor at one of the large centers?
Thanks – I'm so glad I found this forum.
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Re: Treatment centers - large vs. small?
Hi Robert,
All the centers you have listed, with the exception of the Levine Center, which is relatively new and therefore probably not as active as the others, are actually fairly big cancer centers. So, while they may not have quite the depth of experience that you would find at large centers like Mayo Rochester, UAMS, or Dana Farber, they still have enough experience that it should be perfectly fine to do a transplant at one of those centers.
Of course, that assumes you really will want to do a transplant, but that's a whole different discussion that you'll find plenty of discussions about here in the forum.
The real issue isn't so much size but the number of highly experienced myeloma specialists you'll find at each center, and, maybe even more importantly, the philosophy of the specialists at those centers.
Mayo Rochester and Dana Farber have a lot of myeloma specialists, and many of them are very well known. Dana Farber will probably put you on a combination of Velcade, Revlimid, and dexamethasone as induction therapy, while at Mayo, there's a bit more variety, probably depending on the exact specialist you see. I don't think, though, that they do quite as much VRD at Mayo as at Dana Farber. Dana Farber is also more transplant-oriented than Mayo.
Of course, there's also UAMS, which has a relatively standardized protocol that involves two transplants and rather intensive induction therapy, consolidation (post-transplant) therapy, and maintenance therapy.
You did not mention how old you are and what your general health is. You also haven't mentioned whether your disease is high risk, standard risk, or low risk. Some of those factors would affect whether you'd want to consider a donor transplant as part of your initial therapy. Most centers don't do it, and it's not accepted practice, but there are a few people here in the forum who have done it. If you were to want to pursue that option, probably Dana Farber, Sloan Kettering, or perhaps Moffitt or MD Anderson would be places to consider.
You say you are symptomatic, and therefore feel somewhat rushed to make a decision. Unless your symptoms are kidney-related, however, it's not clear that you have to make a decision super, super quickly.
If you find yourself leaning towards going to one of the regional centers you mentioned, I personally would lean toward UNC Chapel Hill. Dr. Voorhees, who answers questions here in the forum from time to time, is at UNC, and I think you'll find from what he has posted here that he has both a balanced and very informed approach to treating myeloma. Dr. Voorhees is also actively involved in research and presents at major conferences.
Dr. Usmani, who has started up the myeloma group at the Levine Center, was previously at UAMS for a long time and, although he may have modified their approach somewhat, I'm not his philosophy is really that different.
I know that Duke is a bit larger than UNC Chapel Hill, and they have a couple of myeloma specialists, but I know less about them than I do about Dr. Voorhees. VCU is also relatively large, but, again, I don't really know their myeloma specialists.
I guess what I'm saying in terms of my preference is that it's not really based on anything negative about the choices besides UNC. It's based more on the impressions I've gotten from Dr. Voorhees' postings here.
Hope this helps a bit. Good luck!
All the centers you have listed, with the exception of the Levine Center, which is relatively new and therefore probably not as active as the others, are actually fairly big cancer centers. So, while they may not have quite the depth of experience that you would find at large centers like Mayo Rochester, UAMS, or Dana Farber, they still have enough experience that it should be perfectly fine to do a transplant at one of those centers.
Of course, that assumes you really will want to do a transplant, but that's a whole different discussion that you'll find plenty of discussions about here in the forum.
The real issue isn't so much size but the number of highly experienced myeloma specialists you'll find at each center, and, maybe even more importantly, the philosophy of the specialists at those centers.
Mayo Rochester and Dana Farber have a lot of myeloma specialists, and many of them are very well known. Dana Farber will probably put you on a combination of Velcade, Revlimid, and dexamethasone as induction therapy, while at Mayo, there's a bit more variety, probably depending on the exact specialist you see. I don't think, though, that they do quite as much VRD at Mayo as at Dana Farber. Dana Farber is also more transplant-oriented than Mayo.
Of course, there's also UAMS, which has a relatively standardized protocol that involves two transplants and rather intensive induction therapy, consolidation (post-transplant) therapy, and maintenance therapy.
You did not mention how old you are and what your general health is. You also haven't mentioned whether your disease is high risk, standard risk, or low risk. Some of those factors would affect whether you'd want to consider a donor transplant as part of your initial therapy. Most centers don't do it, and it's not accepted practice, but there are a few people here in the forum who have done it. If you were to want to pursue that option, probably Dana Farber, Sloan Kettering, or perhaps Moffitt or MD Anderson would be places to consider.
You say you are symptomatic, and therefore feel somewhat rushed to make a decision. Unless your symptoms are kidney-related, however, it's not clear that you have to make a decision super, super quickly.
If you find yourself leaning towards going to one of the regional centers you mentioned, I personally would lean toward UNC Chapel Hill. Dr. Voorhees, who answers questions here in the forum from time to time, is at UNC, and I think you'll find from what he has posted here that he has both a balanced and very informed approach to treating myeloma. Dr. Voorhees is also actively involved in research and presents at major conferences.
Dr. Usmani, who has started up the myeloma group at the Levine Center, was previously at UAMS for a long time and, although he may have modified their approach somewhat, I'm not his philosophy is really that different.
I know that Duke is a bit larger than UNC Chapel Hill, and they have a couple of myeloma specialists, but I know less about them than I do about Dr. Voorhees. VCU is also relatively large, but, again, I don't really know their myeloma specialists.
I guess what I'm saying in terms of my preference is that it's not really based on anything negative about the choices besides UNC. It's based more on the impressions I've gotten from Dr. Voorhees' postings here.
Hope this helps a bit. Good luck!
Re: Treatment centers - large vs. small?
I should add, Robert, that I have not been treated at any of the treatment centers you mentioned. I don't have any "dog in this hunt", as they say. I'm just sharing my own impressions, which are obviously subjective.
Also, to the Beacon folks, maybe I'm the only one with this personal preference, but I sure hope this thread doesn't turn into a series of "Rah, rah, my treatment center is so absolutely, totally AWESOME" postings which don't really answer Robert's questions. I could see how that could happen, and I don't think that would really help Robert or anyone else who comes to the thread later.
Also, to the Beacon folks, maybe I'm the only one with this personal preference, but I sure hope this thread doesn't turn into a series of "Rah, rah, my treatment center is so absolutely, totally AWESOME" postings which don't really answer Robert's questions. I could see how that could happen, and I don't think that would really help Robert or anyone else who comes to the thread later.
Re: Treatment centers - large vs. small?
Agree with much of what's been said re: speed of being seen. My husband had acute kidney issues so speed was of the essence. Went to Mayo in Rochester. You can find a discussion of Mayo's recommended treatment protocol here in the forum at this link (there are also some comments there from one of the Mayo myeloma specialists about the reasons for recent changes in the guidelines, and a link to the most recent update of the guidelines).
My husband had the CyBorD [VCD] regimen for 4.5 cycles (less difficult for kidney complications) and transplant in January of 2014. If you are not high risk or have acute kidney issues, you have more time.
My husband had the CyBorD [VCD] regimen for 4.5 cycles (less difficult for kidney complications) and transplant in January of 2014. If you are not high risk or have acute kidney issues, you have more time.
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philatour - Who do you know with myeloma?: spouse
4 posts
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