Hello. Can anyone provide a list of the Centers of Excellence (or best places to be treated) on the East Coast or southern region of the US? I live in Virginia.
Are Johns Hopkins and Little Rock good options? What about Duke in North Carolina?
Thank you.
Forums
Re: Multiple myeloma centers of excellence
Have you looked at this list?
https://myelomabeacon.org/resources/treatment-centers/
I'm sure others on the forum will chime in with the centers they like in the area.
My only personal advice is to talk to both a transplant-centric specialist as well as one not affiliated with a transplant center. You will likely get pretty different opinions from the two different folks (which I think is a good thing)....at least that has been my consistent experience in talking to quite a few specialists over the past 18 months.
https://myelomabeacon.org/resources/treatment-centers/
I'm sure others on the forum will chime in with the centers they like in the area.
My only personal advice is to talk to both a transplant-centric specialist as well as one not affiliated with a transplant center. You will likely get pretty different opinions from the two different folks (which I think is a good thing)....at least that has been my consistent experience in talking to quite a few specialists over the past 18 months.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma centers of excellence
Multibilly - You have posted on a number of occasions that it is a good idea to consult a myeloma specialist who is not associated with a transplant center. However, aside from Berenson and perhaps the myeloma specialists at the National Institute of Health, how many myeloma specialists are there who fit that description?
It seems to me that just about any myeloma specialist worth their salt is going to be at a major cancer center, and major cancer centers almost always (if not always?) do transplants.
It seems to me that just about any myeloma specialist worth their salt is going to be at a major cancer center, and major cancer centers almost always (if not always?) do transplants.
Re: Multiple myeloma centers of excellence
Good to hear from you Terry,
In addition to Dr. Berenson in California, the non-transplant-center doctors that I work with include those at the Rocky Mountain Cancer Center (RMCC), a network scattered throughout Colorado.
On the transplant-centric side, I have met with two different doctors at two major transplant centers in Colorado that are completely separate from one another.
The difference in opinions between the two different camps was stark (remember, I am only smoldering). Both docs at both transplant centers stated clearly that really the only option for me, when (not "should", but "WHEN") I progress further, was to elect for an auto SCT...period. They both said it was fallacy to consider a drug-only approach and also poo-poo'd holding this disease at bay through the use of supplements and/or diet and that I would be looking at a transplant in a matter of months to a year. It could very well be that different patients had a different experience with these groups, but I can only relate my own experiences.
The RMCC docs (who also have a tremendous amt of experience with multiple myeloma), could easily support going either a drug-only route or an ASCT route. But over the past year, they are now leaning more towards a drug-only route, given all the data that is coming out regarding the efficacy of drug-only treatments. They are also supportive of my diet and supplement efforts. Berenson caps the other end of the continuum by saying "never" to a transplant....period.
When I first embarked on this journey and was talking to the transplant-centric docs, I clearly came away with the notion that an ASCT was pretty much my only option and that I was looking at a few months before I would be going through that hell. 18 months later, I am still smoldering away and all the non-transplant docs now think I could very well continue that way for the rest of my life.
My philosophy for treatment, should I progress, lands somewhere between the RMCC and Berenson philosophy (that is, I won't necessarily rule out an ASCT as a salvage approach down the line, but right now I would not consider it as an option). That is, I won't quite go all the way to say "never" to an ASCT, since who knows where this disease will lead me in a few years?
It was personally good for me to get all these different opinions. But I also get that for others, this might be overwhelming and would put them into decision-paralysis.
So, maybe you are right in that non-transplant-center-based multiple myeloma specialists aren't that prevalent and I am just fortunate to have a few in Colorado...and it is easy for me to get out to Southern California now and then
Or maybe I should re-phrase my suggestion for folks to also seek out specialists that are not heavily ASCT-biased (which I know also exist at transplant centers), rather than saying that one should try to also find a specialist not affiliated with a transplant center?
In addition to Dr. Berenson in California, the non-transplant-center doctors that I work with include those at the Rocky Mountain Cancer Center (RMCC), a network scattered throughout Colorado.
On the transplant-centric side, I have met with two different doctors at two major transplant centers in Colorado that are completely separate from one another.
The difference in opinions between the two different camps was stark (remember, I am only smoldering). Both docs at both transplant centers stated clearly that really the only option for me, when (not "should", but "WHEN") I progress further, was to elect for an auto SCT...period. They both said it was fallacy to consider a drug-only approach and also poo-poo'd holding this disease at bay through the use of supplements and/or diet and that I would be looking at a transplant in a matter of months to a year. It could very well be that different patients had a different experience with these groups, but I can only relate my own experiences.
The RMCC docs (who also have a tremendous amt of experience with multiple myeloma), could easily support going either a drug-only route or an ASCT route. But over the past year, they are now leaning more towards a drug-only route, given all the data that is coming out regarding the efficacy of drug-only treatments. They are also supportive of my diet and supplement efforts. Berenson caps the other end of the continuum by saying "never" to a transplant....period.
When I first embarked on this journey and was talking to the transplant-centric docs, I clearly came away with the notion that an ASCT was pretty much my only option and that I was looking at a few months before I would be going through that hell. 18 months later, I am still smoldering away and all the non-transplant docs now think I could very well continue that way for the rest of my life.
My philosophy for treatment, should I progress, lands somewhere between the RMCC and Berenson philosophy (that is, I won't necessarily rule out an ASCT as a salvage approach down the line, but right now I would not consider it as an option). That is, I won't quite go all the way to say "never" to an ASCT, since who knows where this disease will lead me in a few years?
It was personally good for me to get all these different opinions. But I also get that for others, this might be overwhelming and would put them into decision-paralysis.
So, maybe you are right in that non-transplant-center-based multiple myeloma specialists aren't that prevalent and I am just fortunate to have a few in Colorado...and it is easy for me to get out to Southern California now and then
Or maybe I should re-phrase my suggestion for folks to also seek out specialists that are not heavily ASCT-biased (which I know also exist at transplant centers), rather than saying that one should try to also find a specialist not affiliated with a transplant center?-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma centers of excellence
I was seen at both Johns Hopkins and University of Maryland ... both excellent, but different philosophies when it comes to collecting stem cells for SCT. University of Maryland's website has an excellent video presented by their myeloma specialist.
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Multiple myeloma centers of excellence
I would think that there are places closer than Little Rock. Siteman in St Louis is closer, but still far from what I would imagine are excellent choices in the NE and Atlantic Coast.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Multiple myeloma centers of excellence
Hi Robert,
Do you mind if I ask where you are in Virginia? I think we are very lucky living in the mid-atlantic area, as there are many institutions within a few hours drive with myeloma specialists including NIH, John's Hopkins, University of Maryland, etc. I believe that both the VCU and UVA have specialists who focus on myeloma. EJ and I live in Northern Virginia and have been very happy with the help and support we've received from Virginia Cancer Specialists. EJ had his cell transplant at Fairfax Hospital. They have a very good program and he has done quite well.
All that being said, EJ went to Dana Farber for a second opinion. We decided to go there mostly because we have family in the area, and if we were ever to need treatment at an out of town facility, that would be the best place for us. It has been almost three years since EJs SCT, and his numbers are slowly starting to rise. My hope is to bring him back to DF and work with them and our local oncologist to develop his treatment plan.
I think its important to have both a local oncologist as well as a multiple myeloma specialist as part of your care team.
Lyn
Do you mind if I ask where you are in Virginia? I think we are very lucky living in the mid-atlantic area, as there are many institutions within a few hours drive with myeloma specialists including NIH, John's Hopkins, University of Maryland, etc. I believe that both the VCU and UVA have specialists who focus on myeloma. EJ and I live in Northern Virginia and have been very happy with the help and support we've received from Virginia Cancer Specialists. EJ had his cell transplant at Fairfax Hospital. They have a very good program and he has done quite well.
All that being said, EJ went to Dana Farber for a second opinion. We decided to go there mostly because we have family in the area, and if we were ever to need treatment at an out of town facility, that would be the best place for us. It has been almost three years since EJs SCT, and his numbers are slowly starting to rise. My hope is to bring him back to DF and work with them and our local oncologist to develop his treatment plan.
I think its important to have both a local oncologist as well as a multiple myeloma specialist as part of your care team.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Multiple myeloma centers of excellence
Thanks for the clarification, Multibilly. Always appreciate hearing your thoughts.
I guess there are physicians who focus on myeloma within larger group practices (networks) like the one that you've been going to. I have to wonder, however, how specialized they really are, and how up on the latest research they are, compared to the specialists at the major cancer centers, who are seeing basically nothing but myeloma patients every day, and also doing research.
Like I said, if you go to a specialist at one of the centers, you almost by definition will be seeing a specialist at a center that does transplants.
I also think you have to keep in mind the incentives that physicians in a group practice have for NOT favoring transplants. If they recommend a transplant to a patient, he or she will go off to a cancer center for the transplant, and it's then entirely possible the patient will start doing more consultations there, including maybe even treatment, and doing less at the original group practice that doesn't do transplants.
So there are incentives at work in both situations.
I guess there are physicians who focus on myeloma within larger group practices (networks) like the one that you've been going to. I have to wonder, however, how specialized they really are, and how up on the latest research they are, compared to the specialists at the major cancer centers, who are seeing basically nothing but myeloma patients every day, and also doing research.
Like I said, if you go to a specialist at one of the centers, you almost by definition will be seeing a specialist at a center that does transplants.
I also think you have to keep in mind the incentives that physicians in a group practice have for NOT favoring transplants. If they recommend a transplant to a patient, he or she will go off to a cancer center for the transplant, and it's then entirely possible the patient will start doing more consultations there, including maybe even treatment, and doing less at the original group practice that doesn't do transplants.
So there are incentives at work in both situations.
Re: Multiple myeloma centers of excellence
Regarding, "I have to wonder, however, how specialized they really are, and how up on the latest research they are, compared to the specialists at the major cancer centers, who are seeing basically nothing but myeloma patients every day, and also doing research"
Terrry: Yeah, I get your point. However, the particular doc at RMCC currently has something like 50 multiple myeloma patients and is up on the latest research whenever I quiz him, so I place him on a level above most "general" hematologists when it comes to multiple myeloma. But is he as steeped in multiple myeloma as somebody like Berenson? No. But he knows enough to always be able to answer my questions and was a breath of fresh air after visiting a couple of transplant centers.
What I also like about my local doc is that he has no ego and would happily take treatment direction from another doc like Berenson (who I have currently selected as my designated go-to guy for treatment, should I ever require it). If I ever become symptomatic, I will also likely seek out an opinion from the Mayo, as well as Dr. Landgren before pulling the trigger. Personally, it's easy for me to travel to a different state as I am constantly criss-crossing the US on biz travel.
And I personally don't mind sifting through several different opinions before making a final decision. But honestly, the more time that passes, the more optimistic I am that I may never progress. I made it through the first year and I'm half way through the second year, so my chances are already statistically less that I will progress.
Terrry: Yeah, I get your point. However, the particular doc at RMCC currently has something like 50 multiple myeloma patients and is up on the latest research whenever I quiz him, so I place him on a level above most "general" hematologists when it comes to multiple myeloma. But is he as steeped in multiple myeloma as somebody like Berenson? No. But he knows enough to always be able to answer my questions and was a breath of fresh air after visiting a couple of transplant centers.
What I also like about my local doc is that he has no ego and would happily take treatment direction from another doc like Berenson (who I have currently selected as my designated go-to guy for treatment, should I ever require it). If I ever become symptomatic, I will also likely seek out an opinion from the Mayo, as well as Dr. Landgren before pulling the trigger. Personally, it's easy for me to travel to a different state as I am constantly criss-crossing the US on biz travel.
And I personally don't mind sifting through several different opinions before making a final decision. But honestly, the more time that passes, the more optimistic I am that I may never progress. I made it through the first year and I'm half way through the second year, so my chances are already statistically less that I will progress.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma centers of excellence
We went to Mayo in Rochester. The hemotology group has a subset of doctors who are in the myeloma group. There's a second subset of doctors who do the transplants - allo or auto. There is overlap between the two groups. I believe their protocol, though, is to assign a different doctor to the transplant.
We pretty much ruled out long term drug therapy due to considerable side effects in induction therapy. We found the transplant doctor looked at my husband's case differently than the hem/onc doctor. The hem/onc was more comfortable with collecting stem cells and transplanting at a later date. The transplant doctor recommended immediate transplant and warned it would be difficult for age and complication related reasons.
My husband opted for an ASCT as soon as possible. At that point, his case was reassigned into the transplant centered care group. It was difficult. The protocol is to return to Mayo around Day 100 to get the disease re-staged and transfer you out of the transplant-centered care regimen back to the Mayo hem/onc-centered care.
We pretty much ruled out long term drug therapy due to considerable side effects in induction therapy. We found the transplant doctor looked at my husband's case differently than the hem/onc doctor. The hem/onc was more comfortable with collecting stem cells and transplanting at a later date. The transplant doctor recommended immediate transplant and warned it would be difficult for age and complication related reasons.
My husband opted for an ASCT as soon as possible. At that point, his case was reassigned into the transplant centered care group. It was difficult. The protocol is to return to Mayo around Day 100 to get the disease re-staged and transfer you out of the transplant-centered care regimen back to the Mayo hem/onc-centered care.
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philatour - Who do you know with myeloma?: spouse
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