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Why does secretory multiple myeloma become nonsecretory multiple myeloma?
My 78 yr. old mom is in her fourth year with multiple myeloma and her disease has now become nonsecretory. We didn't catch it in time and now she's having to do 14 radiation treatments for new tumors in her spine, rib, and pelvis. I've been doing research on why multiple myeloma suddenly becomes nonsecretory so I can help my mom decide what drug to try next since Revlimid hasn't worked. Unfortunately, I can't find any medical info as to why this change happens. I'm hoping someone can explain why this happens and what drug should be next to stop the bone damage. My mom has done: Thalomide, Velcade, and Revlimid. Any information is greatly appreciated.
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kore
Re: Why does secretory multiple myeloma become nonsecretory
Dear Kore,
A sub-clone of your mother's disease that is either not making or not secreting antibody (which may have been present at trace levels even at initial diagnosis) has emerged that is Revlimid resistant (at least it sounds like it is Revlimid resistant based on what you are describing). The fact that the emerging clone is non-secretory is only relevant with respect to monitoring disease. In this regard, a whole body PET-CT would be advisable to see where her disease is active. A repeat marrow would also be in order. If serum free light chain testing has not been routinely done, I would also do this, as many "non-secretory" myelomas make low levels of free light chain antibodies that can be measured with this test. If the serum free light chains are normal, serial bone marrows and PET-CT would be the best way to monitor response to treatment in the non-secretory scenario.
The fact that the disease has become non-secretory does not have bearing on the best next treatment. The fact that the disease grew in the face of revliid-based treatment does matter.
Was she on Revlimid at the time of progression? Alone or with dexamethasone? Did she previously respond to Velcade therapy? What Velcade regimen did she receive and how did she tolerate it?
If you can help answer these questions, I will do my best to provide suggestions about next steps.
Thanks!
Pete V.
A sub-clone of your mother's disease that is either not making or not secreting antibody (which may have been present at trace levels even at initial diagnosis) has emerged that is Revlimid resistant (at least it sounds like it is Revlimid resistant based on what you are describing). The fact that the emerging clone is non-secretory is only relevant with respect to monitoring disease. In this regard, a whole body PET-CT would be advisable to see where her disease is active. A repeat marrow would also be in order. If serum free light chain testing has not been routinely done, I would also do this, as many "non-secretory" myelomas make low levels of free light chain antibodies that can be measured with this test. If the serum free light chains are normal, serial bone marrows and PET-CT would be the best way to monitor response to treatment in the non-secretory scenario.
The fact that the disease has become non-secretory does not have bearing on the best next treatment. The fact that the disease grew in the face of revliid-based treatment does matter.
Was she on Revlimid at the time of progression? Alone or with dexamethasone? Did she previously respond to Velcade therapy? What Velcade regimen did she receive and how did she tolerate it?
If you can help answer these questions, I will do my best to provide suggestions about next steps.
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Why does secretory multiple myeloma become nonsecretory
Dear Dr. Vorhees,
Thank you so much! Yes, she was on Revlimid without dex when she became nonsecretory. She responded very well to Velcade (first line treatment) and dex but had to stop the Velcade due to neuropthy in her feet. She then did well on Thalomide (without dex) for over a year but became resistent. At that point, she was put on Revlimid without dex.
It's unclear to me why her oncologist stopped using dex (or any steroid) in combination with the multiple myeloma drug but it may have been due to the neuropthy in her feet.
She hasn't done a 24/hr urine test or bone marrow since being diagnosed at UAMS four years ago. Two weeks ago (due to bone pain in her spine and pelvis) she did an MRI which showed many more lesions/tumors in her spine, rib, and pelvis. She is now doing 14 days of radiation on those spots.
I was thinking that Kyprolis would be the next best step because she did very well on Velcade and Kyprolis appears to have less problems with neuropthy. Would that be a good idea?
Thank you do much!
Kore
Thank you so much! Yes, she was on Revlimid without dex when she became nonsecretory. She responded very well to Velcade (first line treatment) and dex but had to stop the Velcade due to neuropthy in her feet. She then did well on Thalomide (without dex) for over a year but became resistent. At that point, she was put on Revlimid without dex.
It's unclear to me why her oncologist stopped using dex (or any steroid) in combination with the multiple myeloma drug but it may have been due to the neuropthy in her feet.
She hasn't done a 24/hr urine test or bone marrow since being diagnosed at UAMS four years ago. Two weeks ago (due to bone pain in her spine and pelvis) she did an MRI which showed many more lesions/tumors in her spine, rib, and pelvis. She is now doing 14 days of radiation on those spots.
I was thinking that Kyprolis would be the next best step because she did very well on Velcade and Kyprolis appears to have less problems with neuropthy. Would that be a good idea?
Thank you do much!
Kore
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kore
Re: Why does secretory multiple myeloma become nonsecretory
I think a Kyprolis-based regimen makes good sense in your mother's case.
The addition of dexamethasone to thalidomide, Revlimid or pomalyst can make a difference. In a randomized phase 2 study of pomalyst vs. pomalyst and dexamethasone, the response rate to the pomalyst and dexamethasone was ~ 3x that of pomalyst alone. Dex does not aggravate neuropathy, but certainly has its own problematic side effects.
Again, I think a Kyprolis-based approach would be a good next step.
Good luck!
Pete V.
The addition of dexamethasone to thalidomide, Revlimid or pomalyst can make a difference. In a randomized phase 2 study of pomalyst vs. pomalyst and dexamethasone, the response rate to the pomalyst and dexamethasone was ~ 3x that of pomalyst alone. Dex does not aggravate neuropathy, but certainly has its own problematic side effects.
Again, I think a Kyprolis-based approach would be a good next step.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Why does secretory multiple myeloma become nonsecretory
Dear Dr. Voorhees,
I cannot thank you enough for your intelligent and prompt response. The Myeloma Beacon is truely a beacon for everyone with myeloma and for all of us caregivers.
Best to you!
kore
I cannot thank you enough for your intelligent and prompt response. The Myeloma Beacon is truely a beacon for everyone with myeloma and for all of us caregivers.
Best to you!
kore
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kore
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