Hi,
My husband was diagnosed at age 61 with multiple myeloma in March 2016, after pain in the hip for months, a painful fall in January, and surgery for the purpose of biopsy in February. No other bone involvement was detected in a PET scan. M-spike was 2.7 g/dL (27 g/l) at diagnosis, went up to 2.9 g/dL. Type is IgG lambda.
He was on Revlimid, Velcade, and dexamethasone for about 4 months, M-spike went down slowly and gradually to 1.4 g/dL, then up to 1.5 g/dL.
Since he also started getting a local rash from the Velcade shots, his doctor replaced the Velcade with Kyprolis (carfilzomib) at this point. M-spike went down to 1.0 in the first cycle. He had a really bad allergic reaction, and they reduced the Revlimid dose several times and added prednisone. M-spike went up to 1.1 then 1.3.
Now the doctor replaced the Revlimid with Cytoxan (cyclophosphamide). Completed first cycle on this combo, M-spike is still 1.3. Started second cycle on Kyprolis, Cytoxan, and dexamethasone, having bad side effects from the Cytoxan.
During a consultation with the stem cell transplant doctor in August, the doctor said the response was sluggish and therefore we need to do a stem cell transplant sooner rather than later (within the next few months), but first need to get better response.
In the meantime, my husband has developed more areas of pain in his hips, as well as back pain. His doctor said we need to get the multiple myeloma under control. But this does not seem to be happening.
My husband is being treated at Stanford Hospital in California, which is a big center with many multiple myeloma patients and stem cell transplant patients. The multiple myeloma doctor's decisions and actions seem reasonable given the developments. But now a good time to get a second opinion? If so, where should we get a second opinion?
I'm also wondering what other treatment options might be best to pursue given my husband treatment history and response to treatments, and whether doing a stem cell transplant now really makes sense and what to expect from it.
Thanks in advance for any input here.
Forums
6 posts
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Limited response to initial treatments - now what?
I'm in the Sacramento area and got a second opinion from Dr. Jeff Wolf at the UC San Francisco medical center. He's a pretty well recognized expert on myeloma and was great to talk with.
Best of luck!
Best of luck!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Limited response to initial treatments - now what?
A second opinion is always a good idea. The oncologist I see at Stanford sees almost exclusively myeloma patients (worth asking what percent of your doc's patients have myeloma), and is someone I think the world of. That said, when the time comes for me to make a decision that's not straightforward, I will certainly go to UCSF for another set of eyes, and if I'm still not clear on what path to take, will seek a third (likely Seattle or Los Angeles).
At UCSF, both Jeffrey Wolf and Thomas Martin are excellent. They work closely together and see only myeloma patients.
At UCSF, both Jeffrey Wolf and Thomas Martin are excellent. They work closely together and see only myeloma patients.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Limited response to initial treatments - now what?
Hi Alizabeth-
My husband was diagnosed at 51 in November - December, 2015, so we're either a decade or a few months ahead of you?
I'm a general internist and he is a banker. I'm affiliated with Stanford and did my residency there, so I'm not without bias.
That said, we live in San Francisco and elected to get treatment up here at UCSF. We see Dr. Martin, but Dr. Wolfe is also here (and is the biggest name in the program, as director). I believe a third younger doctor just joined the myeloma team. We've been happy.
We saw Dr. Liedtke for a consult at Stanford before we elected to go with UCSF. We liked her and my residents (I teach outpatient medicine) all love her. For us it was about the treatment plan, my husband's preferences for his cancer, and convenience.
He is on Kyprolis, Revlimid, dexamethasone (KRD) maintenance after an autologous stem cell transplant, but we were blessed with a really great response to treatment despite higher risk cytogenetics. We have, I'd guess you'd call them "classmates", friend,s and cohorts, pursuing other medical combinations and/or with less responses even after the transplant.
Your specialist's and team's plans do seem reasonable but i'd also say getting a second opinion is never a bad idea. Whenever possible, the transplant team wants a deep response before the actual transplant.
As to actual treatment options, there are so many variables - cytogenetics, staging, severity of adverse drug reactions (ADRs), quality of life, and patient preferences - that go into determining what is next and when a treatment has failed or become ineffective or intolerable. A second opinion and another set of eyes may let you ask new questions or direct you to ask your Stanford team about other things.
We wish you both the best.
rick
My husband was diagnosed at 51 in November - December, 2015, so we're either a decade or a few months ahead of you?
I'm a general internist and he is a banker. I'm affiliated with Stanford and did my residency there, so I'm not without bias.
That said, we live in San Francisco and elected to get treatment up here at UCSF. We see Dr. Martin, but Dr. Wolfe is also here (and is the biggest name in the program, as director). I believe a third younger doctor just joined the myeloma team. We've been happy.
We saw Dr. Liedtke for a consult at Stanford before we elected to go with UCSF. We liked her and my residents (I teach outpatient medicine) all love her. For us it was about the treatment plan, my husband's preferences for his cancer, and convenience.
He is on Kyprolis, Revlimid, dexamethasone (KRD) maintenance after an autologous stem cell transplant, but we were blessed with a really great response to treatment despite higher risk cytogenetics. We have, I'd guess you'd call them "classmates", friend,s and cohorts, pursuing other medical combinations and/or with less responses even after the transplant.
Your specialist's and team's plans do seem reasonable but i'd also say getting a second opinion is never a bad idea. Whenever possible, the transplant team wants a deep response before the actual transplant.
As to actual treatment options, there are so many variables - cytogenetics, staging, severity of adverse drug reactions (ADRs), quality of life, and patient preferences - that go into determining what is next and when a treatment has failed or become ineffective or intolerable. A second opinion and another set of eyes may let you ask new questions or direct you to ask your Stanford team about other things.
We wish you both the best.
rick
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Limited response to initial treatments - now what?
Thank you everyone for the responses. UCSF sounds good, we will pursue that.
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Limited response to initial treatments - now what?
This is a very difficult situation. I've been through this and will share what I learned.
A couple of things:
Recent information is that the level of M-spike prior to the stem cell transplant is not the determinant of survival. Yes, it should be reasonable. One oncologist I saw wanted it below 1.0 g/dL. Another said below 0.5. Yet another said below 0.1.
Also, the results of the stem cell transplant are not the determinant of survival, much to our surprise.
What is critical is the type of high-risk factor that he has. You can't change that now.
Also critical is how well consolidation treatment works AFTER stem cell transplant.
If you don't know what works before stem cell transplant, then what are you going to use after the transplant? Ask the doctors; their answer will tell you everything you need to know.
The doctors are trying to find what works. Trust them, they are on the right track.
Sorry you have to go through this ordeal.
Try to find a way to relax. You need your strength to deal with this.
Best wishes.
A couple of things:
Recent information is that the level of M-spike prior to the stem cell transplant is not the determinant of survival. Yes, it should be reasonable. One oncologist I saw wanted it below 1.0 g/dL. Another said below 0.5. Yet another said below 0.1.
Also, the results of the stem cell transplant are not the determinant of survival, much to our surprise.
What is critical is the type of high-risk factor that he has. You can't change that now.
Also critical is how well consolidation treatment works AFTER stem cell transplant.
If you don't know what works before stem cell transplant, then what are you going to use after the transplant? Ask the doctors; their answer will tell you everything you need to know.
The doctors are trying to find what works. Trust them, they are on the right track.
Sorry you have to go through this ordeal.
Try to find a way to relax. You need your strength to deal with this.
Best wishes.
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
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