We are looking for advice on where to go for a second opinion. We live in the Cleveland area and my husband is being treated by a hematologist / oncologist at the Cleveland Clinic. He is just finishing his first cycle of Revlimid, Velcade, and dex (RVD) and Zometa. The current plan is 4 cycles and a bone marrow transplant. He has the nonsecretory version.
Hoping to get clarification on current plan and also help on some of his side effects. We are willing to travel if necessary.
Any help would be appreciated.
Thanks.
Forums
10 posts
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Blue58 - Name: Blue58
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 57
Re: Second opinion - are in the Cleveland area
Hi Blue58,
The two myeloma treatment centers closest to you, other than the Cleveland Clinic, are probably the Ohio State cancer center in Columbus, which has several myeloma specialists, and Roswell Park cancer center in Buffalo, which has Dr. Philip McCarthy.
There's also Dr. Jeffrey Zonder at the Karmanos Center in Detroit.
I'm sorry to hear that you and your husband are not happy with the care he's getting at the Cleveland Clinic. Dr. Jason Valent, a myeloma specialist who posts often here in the forum, is at the Cleveland Clinic, and he seems to be both knowledgeable and compassionate.
There's a complete list of US myeloma treatment centers that you can view here:
"Multiple myeloma treatment centers"
Good luck!
The two myeloma treatment centers closest to you, other than the Cleveland Clinic, are probably the Ohio State cancer center in Columbus, which has several myeloma specialists, and Roswell Park cancer center in Buffalo, which has Dr. Philip McCarthy.
There's also Dr. Jeffrey Zonder at the Karmanos Center in Detroit.
I'm sorry to hear that you and your husband are not happy with the care he's getting at the Cleveland Clinic. Dr. Jason Valent, a myeloma specialist who posts often here in the forum, is at the Cleveland Clinic, and he seems to be both knowledgeable and compassionate.
There's a complete list of US myeloma treatment centers that you can view here:
"Multiple myeloma treatment centers"
Good luck!
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JimNY
Re: Second opinion - are in the Cleveland area
JimNY - Thank you so much for your reply. It's not that we are unhappy with the Clinic, we just want a second opinion for treatment validation.
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Blue58 - Name: Blue58
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 57
Re: Second opinion - are in the Cleveland area
Hi Blue58
Wishing you and your husband all the best. We also sought a second opinion soon after diagnosis and treatment was underway for my husband (fall of 2013). We were well satisfied with the treatment and the overall program, and opted to stay the course post-second opinion at our original treatment center. The outcome was (a) his treatment and status were validated and (b) the plan to proceed to SCT was also validated and explored in a bit more depth. The benefit, in my view, was the point of view was just different enough to provide additional peace of mind.
During research on a second opinion site, it turns out there are a few schools of thought re: treatment for myeloma. If you want validation, either of JimNY's suggestions are good ones. They have the considerable advantage of being close to home. There is also Mayo Clinic's mSMART website, reflecting their thinking on what constitutes a high, intermediate, and standard risk patient, as well as recommended treatment protocols.
If you want a center with a different philosophy, consider Dr. James Berenson in Los Angeles or University of Arkansas's program. Dr. Siegel at Hackensack Medical Center in New Jersey and Dr. Tricot at the University of Iowa practiced at the University of Arkansas prior to relocating; they would both be closer than Arkansas.
As for side effects, the chemo nurses at our center are fabulous. Ours have helped to sort out some of the problems. Ask to speak to a CC oncology pharmacist if you still need help. In other cases, it's been trial and error. Ensure he understands lots of fluids (68 to 85 oz) are his best friend during chemo.
Wishing you and your husband all the best. We also sought a second opinion soon after diagnosis and treatment was underway for my husband (fall of 2013). We were well satisfied with the treatment and the overall program, and opted to stay the course post-second opinion at our original treatment center. The outcome was (a) his treatment and status were validated and (b) the plan to proceed to SCT was also validated and explored in a bit more depth. The benefit, in my view, was the point of view was just different enough to provide additional peace of mind.
During research on a second opinion site, it turns out there are a few schools of thought re: treatment for myeloma. If you want validation, either of JimNY's suggestions are good ones. They have the considerable advantage of being close to home. There is also Mayo Clinic's mSMART website, reflecting their thinking on what constitutes a high, intermediate, and standard risk patient, as well as recommended treatment protocols.
If you want a center with a different philosophy, consider Dr. James Berenson in Los Angeles or University of Arkansas's program. Dr. Siegel at Hackensack Medical Center in New Jersey and Dr. Tricot at the University of Iowa practiced at the University of Arkansas prior to relocating; they would both be closer than Arkansas.
As for side effects, the chemo nurses at our center are fabulous. Ours have helped to sort out some of the problems. Ask to speak to a CC oncology pharmacist if you still need help. In other cases, it's been trial and error. Ensure he understands lots of fluids (68 to 85 oz) are his best friend during chemo.
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philatour - Who do you know with myeloma?: spouse
Re: Second opinion - are in the Cleveland area
Thanks Philatour. I have been reading up on Dr. Berenson and really like his approach. The validation that you received from the specialist is what we are looking for. The SCT is also in our current plan and concerns us.
This forum has provided us with so much more insight than I have found from other sites.
This forum has provided us with so much more insight than I have found from other sites.
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Blue58 - Name: Blue58
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 57
Re: Second opinion - are in the Cleveland area
We were very impressed with Dr. Rafat Abonour from Indiana University, Indianapolis, when he came to Seattle and presented at a conference at the Fred Hutchinson Cancer Center.
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heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
Re: Second opinion - are in the Cleveland area
I can't say enough good things about The James Cancer Center in Columbus, in particular Dr. Craig Hofmeister and his staff.
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: Second opinion - are in the Cleveland area
We lost a very good myeloma expert to the Cincinnati area, last year.
Dr. Edward A. Faber, DO
Oncology Hematology Care
4725 E Galbraith Rd Ste 320
Cincinnati, OH 45236
Good Luck.
Dr. Edward A. Faber, DO
Oncology Hematology Care
4725 E Galbraith Rd Ste 320
Cincinnati, OH 45236
Good Luck.
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Rneb
Re: Second opinion - are in the Cleveland area
Dr. Sarah Holstein is the myeloma specialist at Roswell Park Cancer Institute in Buffalo.
Dr. Philip McCarthy is the Director of the Bone Marrow Transplant Service.
I received three rounds of Revlimid, Velcade, and dex (RVD) in the fall of 2014, then an auto stem cell transplant (SCT) in December. I have good results so far. They are often called upon for 2nd opinions.
If I wanted a 2nd opinion, I would probably come to Cleveland!!
Very best wishes on your journey.
Dr. Philip McCarthy is the Director of the Bone Marrow Transplant Service.
I received three rounds of Revlimid, Velcade, and dex (RVD) in the fall of 2014, then an auto stem cell transplant (SCT) in December. I have good results so far. They are often called upon for 2nd opinions.
If I wanted a 2nd opinion, I would probably come to Cleveland!!
Very best wishes on your journey.
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AEL
Re: Second opinion - are in the Cleveland area
Thanks to all that responded. We discussed options with our current doctor and he is sending us to Dr Liu at the Cleveland Clinic, who is a SCT / myeloma specialist.
We also discussed his worst side effect – burning thigh when standing too long. We are told this is nerve pain. He is scheduled for an MRI in a few weeks.
Once we meet with her I will provide another update.
Thanks.
We also discussed his worst side effect – burning thigh when standing too long. We are told this is nerve pain. He is scheduled for an MRI in a few weeks.
Once we meet with her I will provide another update.
Thanks.
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Blue58 - Name: Blue58
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 57
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