I don't know that I'm looking for any answers here, more just looking to see if anyone has experienced the same thing and see what different options they have explored.
My husband was diagnosed with multiple myeloma in June, 2010 (at age 54). We found out very quickly that he is allergic to Revlimid, but Velcade and dex kept him in CR for about 16 months. When his m-spike started climbing again, he had an auto transplant in January 2012.
By August, 2012 we suspected that it was coming back (pain in familiar areas), though his blood work still showed no M-spike (and it has continue to show no measurable M-spike in the 2.5 years since then). In September, visible lumps started showing up on his shin and head. Biopsy confirmed that they were myeloma.
Local radiation knocked those lumps down, but then more started showing up in his cheek and on his chest, along with shoulder pain (in an area of previous lesions, though scans were "inconclusive").
So, back to chemo. Kyprolis and dex didn't touch the plasmacytomas and he was allergic to Pomalyst (not surprising, since it is in the same family as Revlimid). Back to Velcade and dex, which worked on their own for a few months, but when more plasmacytomas popped up, they added Cytoxan.
Fast forward to summer 2014 and my husband was having a very hard time with the side effects of the chemo. Additionally, his platelet count kept dropping so low that they would have to skip a week of chemo. Eventually, they had to go to a regular every-other-week schedule so his body could keep up. That was not enough to keep the myeloma at bay and new plasmacytomas started popping up in November.
Back off the chemo, since it wasn't working, and trying radiation to slow hot spots down. New plasmacytomas keep popping up, though, often in recently radiated areas, and they can only radiate so much in one area. A new batch has just popped up in 2 areas and we are going to be talking to the doctor about it soon, so I am trying to wrap my head around what happens next. There are still a few more chemo drugs that they can try, if my husband can tolerate them. He is not eligible for most clinical trials (if he were interested, which he doesn't seem to be) because he has no measurable m spike.
It's very frustrating because I don't know what the acceleration of the plasmacytoma growth means for my husband. It doesn't seem like it has the same read as if it was his M-spike going up (i.e., more marrow involvement, leading to being immune compromised, etc, etc). It is possible his has become non-secreting, but we didn't see that on his last scans (though they were a couple of years ago – we are currently going on visible lump tracking).
Having been off the chemo since Thanksgiving (while trying radiation), his blood work is actually looking better than it has in awhile (hemoglobin and RBC just a little low, but higher than usual; all else nominal).
Just wondering if any other folks have had similar experiences and whether they had a particular regimen work for them.
Forums
Re: Plasmacytomas everywhere, but no M-spike
No experience, but I would suggest a PET scan to confirm that there is no bone involvement. Also, some trials do not have a certain M-spike prerequisite, if he is interested in that.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Plasmacytomas everywhere, but no M-spike
Interesting that he has confirmed plasmacytomas but no M-spike post auto transplant. Me too. In 2012, I had an auto transplant for AL amyloidosis (cousin to myeloma). I had complete response. But then in 2014 I was diagnosed with myeloma based on multiple plasmacytomas. No M spike. Haven't had an M spike since being diagnosed with myeloma (but I had a huge one with amyloidosis). So my myeloma is non-secretory.
I wonder if the lack of M spike has something to do with post-transplant setting? Maybe somehow the transplant converted our plasma cells to non-secretory?
I started with bortezomib (Velcade) / lenalidomide (Revlimid) / dex, but relapsed. Now I'm on carfilzomib (Kyprolis) / lenalidomide / dex, and seem to be doing okay so far.
I wonder if the lack of M spike has something to do with post-transplant setting? Maybe somehow the transplant converted our plasma cells to non-secretory?
I started with bortezomib (Velcade) / lenalidomide (Revlimid) / dex, but relapsed. Now I'm on carfilzomib (Kyprolis) / lenalidomide / dex, and seem to be doing okay so far.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Plasmacytomas everywhere, but no M-spike
Hi Blair-
He had a PET scan when the plasmacytomas showed up after the transplant and it showed no bone activity. Unfortunately, it also "showed" that his plasmacytomas weren't active either, even though biopsy showed they were, so we take the PET scan results with a grain of salt. They may do another soon, but his doctor is concerned about over-exposure and secondary cancers from too many scans.
We are still looking at trials. There are some that do not require the M-spike, but many of those include Revlimid, which he is allergic to. Our doctor is in regular communication with the folks at Stanford and UCSF to see what he might be eligible for, so keep your fingers crossed!
Hi Tracy-
Glad to hear you are doing well now. The non-secreting after transplant thing is very interesting (don't know if that's the right word, but "annoying" didn't seem a good word choice either, however accurate it is) and I hope some medical folks will look at that sometime. It seems the same thing happened with Arnie Goodman after his transplant too.
Take care everyone and thanks for the responses!
He had a PET scan when the plasmacytomas showed up after the transplant and it showed no bone activity. Unfortunately, it also "showed" that his plasmacytomas weren't active either, even though biopsy showed they were, so we take the PET scan results with a grain of salt. They may do another soon, but his doctor is concerned about over-exposure and secondary cancers from too many scans.
We are still looking at trials. There are some that do not require the M-spike, but many of those include Revlimid, which he is allergic to. Our doctor is in regular communication with the folks at Stanford and UCSF to see what he might be eligible for, so keep your fingers crossed!
Hi Tracy-
Glad to hear you are doing well now. The non-secreting after transplant thing is very interesting (don't know if that's the right word, but "annoying" didn't seem a good word choice either, however accurate it is) and I hope some medical folks will look at that sometime. It seems the same thing happened with Arnie Goodman after his transplant too.
Take care everyone and thanks for the responses!
Re: Plasmacytomas everywhere, but no M-spike
Ladyaero - It sounds like you have a great advocate in your physician which will go a long way in providing the best possible options. Wishing your husband all the best.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Plasmacytomas everywhere, but no M-spike
Just curious if the plasmacytomas are causing any of the CRAB symptoms?
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Plasmacytomas everywhere, but no M-spike
He has the "A" (anemia) and the "B" (bone lesions).
Some of the plasmacytomas are in soft tissue (cheek, for instance), but he has also had them start in soft tissue and then cause lesions – ones on his scalp have left visible divots in his skull.
In the past, he has also had myeloma that started in the bone and "ate" it's way out. It destroyed most of his 6th rib (the mass on the rib is what got him in to the doctor at diagnosis) and did major damage to his clavicles (both broke due to the damage), along with lesions in most areas of his skeletal system (thankfully, though, not his spine). Oddly, even when his bone destruction was super active (right at diagnosis), his calcium levels were just skirting the top end of normal:
calcium (standard range: 8.5 - 10.3 mg/dL) 10.4 (at diagnosis)
So, he's never really hit the C or R, though he had an M-spike of 3.4 g/dL (34 g/L) at diagnosis.
Some of the plasmacytomas are in soft tissue (cheek, for instance), but he has also had them start in soft tissue and then cause lesions – ones on his scalp have left visible divots in his skull.
In the past, he has also had myeloma that started in the bone and "ate" it's way out. It destroyed most of his 6th rib (the mass on the rib is what got him in to the doctor at diagnosis) and did major damage to his clavicles (both broke due to the damage), along with lesions in most areas of his skeletal system (thankfully, though, not his spine). Oddly, even when his bone destruction was super active (right at diagnosis), his calcium levels were just skirting the top end of normal:
calcium (standard range: 8.5 - 10.3 mg/dL) 10.4 (at diagnosis)
So, he's never really hit the C or R, though he had an M-spike of 3.4 g/dL (34 g/L) at diagnosis.
Re: Plasmacytomas everywhere, but no M-spike
I would look into clinical trials that focus on plasmacytomas! This means of course that the myeloma is active outside the bone marrow which makes it harder to control.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Plasmacytomas everywhere, but no M-spike
We have not had exactly the same experience. However, my husband's blood work on Revlimid would never show M-protein, but he started developing plasmacytomas. Chemo would take them away, but they start growing up in other different areas right after the chemo wears off.
My main concern is that they are bigger than previous ones. We have not gone ahead with radiation, and the reason is exactly that it only helps temporarily.
I am wondering if anyone else has started a treatment that would reduce the tumors.
My main concern is that they are bigger than previous ones. We have not gone ahead with radiation, and the reason is exactly that it only helps temporarily.
I am wondering if anyone else has started a treatment that would reduce the tumors.
Re: Plasmacytomas everywhere, but no M-spike
I tend to use older chemotherapy drugs in combination with the newer agents in this scenario. Depending on your husband's health and kidney function, using a plasma cell leukemia regimen of Velcade, dexamethasone, cisplatin, Adriamycin (doxorubicin), Cytoxan, and etoposide (VD-PACE), or a similar regimen of dexamethasone, Cytoxan, etoposide, and cisplatin (DCEP), may be an option. These regimens are given over several days in the hospital and will, in the short term, have the side effect of low healthy white cells, red cells, and platelets.
Depending on how severe the allergic reactions were to Revlimid and Pomalyst, trying to use antihistamines (Allegra, Zyrtec, or Benadryl) in combination with a daily dose of dexamethasone or prednisone can also be tried to limit the allergy.
Depending on how severe the allergic reactions were to Revlimid and Pomalyst, trying to use antihistamines (Allegra, Zyrtec, or Benadryl) in combination with a daily dose of dexamethasone or prednisone can also be tried to limit the allergy.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
11 posts
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