I am wanting to ensure my husband gets the best care. I want a doctor who is not stuck in standard of care but isn't on the totally unproven edge. Ideally, I want to stay in Florida, where we live but will consider going else where.
I want a doctor that will tailor treatment to my husband's gene expression - I think. Does anyone have thoughts?
My husband is IgA kappa, no chromosome deletions, has reached a very good partial response (VGPR) but still has minimal residual disease (MRD), although we won't have new insights until January - 3 months after his stem cell transplant.
Any suggestions on finding a doctor who will really tailor a treatment and "think" rather than default to standard of care? I am not saying standard of care is bad, I just fear it as a default if tailoring to gene, phenotype, etc. would provide better results.
Thank you.
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Re: Multiple myeloma specialist in Florida (or elsewhere)
I think Dr. Hoffman, one of the Beacon medical advisors, is out of Florida.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Multiple myeloma specialist in Florida (or elsewhere)
Hi Irankin,
At one level, what you are asking for is not unreasonable at all. I think almost any myeloma specialist will tailor treatment to your husband rather than just going by the standard of care. That's why so often you will see the recommendation to be treated by a myeloma specialist. You can find a list of myeloma centers in FL at https://myelomabeacon.org/resources/treatment-centers/#Florida.
Each of these 3 centers should have an oncologist specializing in myeloma. Moffitt in Tampa is the one I've seen mentioned the most here in the forum, but I do not have personal experience with any of them.
As far as using gene expression profiling to tailor the treatment, though, I'm not sure anyone does that yet for multiple myeloma. As I understand it (and someone feel free to correct me if I'm wrong here), myeloma researchers are just not yet at the point of knowing what genes and what proteins that are expressed are tied to what specific "versions" of multiple myeloma. Moreover, we don't know which myeloma drugs are best for which gene mutations, etc. I think what you're asking for here - personalized oncology treatment - is something many people are working toward, but we are not there yet, especially for myeloma, which is such a complex disease.
Having said that, a myeloma specialist would look at the cytogenetic results from the bone marrow FISH test and use that as one factor in deciding how aggressive the treatment should be. Fortunately for your husband, you said there were no abnormalities found in this testing.
One final comment - don't be overly concerned that your husband is VGPR at this stage, or even in January if that happens. In some people progress is slower than in others. In fact, a recent paper found that was one of several factors that is associated with "exceptional responders." (http://www.nature.com/bcj/journal/v5/n10/full/bcj201591a.html)
Best wishes. Please keep us posted on how things go for your husband.
Mike
At one level, what you are asking for is not unreasonable at all. I think almost any myeloma specialist will tailor treatment to your husband rather than just going by the standard of care. That's why so often you will see the recommendation to be treated by a myeloma specialist. You can find a list of myeloma centers in FL at https://myelomabeacon.org/resources/treatment-centers/#Florida.
Each of these 3 centers should have an oncologist specializing in myeloma. Moffitt in Tampa is the one I've seen mentioned the most here in the forum, but I do not have personal experience with any of them.
As far as using gene expression profiling to tailor the treatment, though, I'm not sure anyone does that yet for multiple myeloma. As I understand it (and someone feel free to correct me if I'm wrong here), myeloma researchers are just not yet at the point of knowing what genes and what proteins that are expressed are tied to what specific "versions" of multiple myeloma. Moreover, we don't know which myeloma drugs are best for which gene mutations, etc. I think what you're asking for here - personalized oncology treatment - is something many people are working toward, but we are not there yet, especially for myeloma, which is such a complex disease.
Having said that, a myeloma specialist would look at the cytogenetic results from the bone marrow FISH test and use that as one factor in deciding how aggressive the treatment should be. Fortunately for your husband, you said there were no abnormalities found in this testing.
One final comment - don't be overly concerned that your husband is VGPR at this stage, or even in January if that happens. In some people progress is slower than in others. In fact, a recent paper found that was one of several factors that is associated with "exceptional responders." (http://www.nature.com/bcj/journal/v5/n10/full/bcj201591a.html)
Best wishes. Please keep us posted on how things go for your husband.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Multiple myeloma specialist in Florida (or elsewhere)
Have you looked at Mayo in Jacksonville? I have never been there, but my mother is being treated at Mayo in Minnesota, and we have been pleased with her care.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Multiple myeloma specialist in Florida (or elsewhere)
I will also suggest Mayo in Jacksonville. I drive ten hours to be at Mayo at Rochester, MN. I am very pleased with my hematologist and entire staff involving my three BMB, two Pet Scan, and X-rays , blood test, stem cel collection for freezing etc.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
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