Hi All.
I'm 36 and I've just been diagnosed with multiple myeloma. I have ankylosing spondylitis and for the past 1.5 years I've been on anti-tnf-alpha drugs adalimumab (Humira) and infliximab (Remicade). I'm wondering if anyone else had been on these drugs before your diagnosis and how are you doing?
When NSAIDs weren't working well for my AS, I was started on Humira with the standard every 14 days dosing, but after it stopped working so well I was bumped up to every 10 days. I switched rheumatologists and my new one switched me to Remicade. I went 7 weeks between the two drugs due to a delay with the insurance company and hospital. During this time an all out war occurred in my body during which I had the worst flair I've ever experienced. At night I could barely walk at all, but it started getting better during the 7th week. Within 48 hours of the infliximab I was nearly in remission.
However, before going off the Humira I started experiencing cryoglobulinemia symptoms throughout the winter. I didn't know what it was until months later, after starting the Remicade, that I showed a picture of what looked like severe hives on my rear waistline when I was out in the cold for hours (from several months ago). The dermatologist ran some tests, which came back as a 13% cryocrit and the detection of M-protein. I was then sent to the hematologist who initially said the M-protein was barely detectable and I had MGUS, but then the next thing I know I'm getting a bone marrow biopsy which showed 20% plasma cells and they're saying it's active multiple myeloma that requires treatment.
I'm scheduled next week to see a seemingly well credentialed multiple myeloma research doctor, so I don't know anything yet.
What interests me the most is that I've found two papers which link anti-tnf-alpha to MGUS and multiple myeloma. The MGUS paper ( https://www.ncbi.nlm.nih.gov/pubmed/21834947 ) implies that stopping the anti-tnf-a treatment may reverse the mgus. Another paper ( https://www.ncbi.nlm.nih.gov/pubmed/22103549 ) has a man with MGUS who was treated with Remicade which progressed to active multiple myeloma after only four weeks. Amazingly after some chemo he was multiple myeloma free. Also related, there are many reports of anti-tnf-alpha patients developing lymphoma which spontaneously regresses after anti-tnf-alpha cessation.
I'm hoping that after the Remicade clears out of my system, which could take months, I could revert to a smoldering multiple myeloma or even an MGUS state. Is this possible? I am wondering if my multiple myeloma specialist will be open to me waiting a few months before deciding on anything; would this be a mistake to just wait and see what happens to my numbers?
Here are my abnormal tests. From everything I've read it appears to me that I'd be considered smoldering if it weren't for the very high FLC ratio.
Bone marrow plasma cell percentage: 20%
Hgb: 12.8 GM/dL
RDW: 15.1%
M Protein: 53 mg/dL (Not sure what the difference between these tests is)
SPE M Protein: 1.89 GM/dL
SPE Gamma: 2.47 GM/dL
SPE Alpha-2: 1.42 GM/dL
SPE Albumin: 3.27 GM/dL
IgM Ser QN: 32 mg/dL
IgG Ser QN: 2530 mg/dL (was 1600 a couple of weeks before, but different lab)
Free Kappa L.C. Ser QN: 1101.36 mg/L
Free Lambda L.C. Ser QN: 9.78 mg/L
Free Kappa/Lambda Ratio: 112.61
Protein Ur Tm QN: 1682 mg/24hr
Creatinine Clearance: 171 mL/min (High)
Creatinine SerPl QN: 0.73 mg/dL (Low)
Sorry for the long post. Any insight would be appreciated.
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8 posts
• Page 1 of 1
Re: Multiple myeloma after anti-TNF-alpha therapy
Welcome to to the forum,
I'm totally out of my league to comment on the impact of your current therapies on your monoclonal gammopathy. But I will comment on whether you might be able to delay treatment.
It's not a given that all specialists would initiate treatment based on exhibiting only a high FLC ratio in the absence of meeting one of the CRAB criteria.
As an example, my specialist would likely not initiate treatment based on only meeting one of the new SLiM criteria (FLC ratio > 100, BMPC > 60%, >1 focal lesions). His argument would be that there are no solid studies that show that treating patients who meet one of the new SLiM criteria will result in better overall survival, and that they will have better overall outcomes.
Additionally, he would likely say that while there is indeed a stronger likelihood of transformation to CRAB-based symptomatic multiple myeloma with patients that exhibit the new SLiM criteria, it is certainly not a given that a patient will transform to having CRAB-based symptomatic multiple myeloma in 1-2 years. He would instead likely just closely monitor that patient until it was clear that end-organ damage might be starting.
One of the reasons for this strategy is based on the the hope that when one does transform to having CRAB-based multiple myeloma, that the patient would then have access to better and less toxic treatments than are available today.
Keep in mind that is just what my specialist would likely say. There are certainly other respected specialists who would argue for starting treatment earlier based on meeting one of the SLiM criteria.
In any case, I would direct you to the closing statement in this article about the criteria for a multiple myeloma diagnosis,
"Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests."
Lastly, I'd also point you to my own history as a high-risk smolderer and just how much my free light chain ratio has changed over time.
Hope this gives you some food for thought.
I'm totally out of my league to comment on the impact of your current therapies on your monoclonal gammopathy. But I will comment on whether you might be able to delay treatment.
It's not a given that all specialists would initiate treatment based on exhibiting only a high FLC ratio in the absence of meeting one of the CRAB criteria.
As an example, my specialist would likely not initiate treatment based on only meeting one of the new SLiM criteria (FLC ratio > 100, BMPC > 60%, >1 focal lesions). His argument would be that there are no solid studies that show that treating patients who meet one of the new SLiM criteria will result in better overall survival, and that they will have better overall outcomes.
Additionally, he would likely say that while there is indeed a stronger likelihood of transformation to CRAB-based symptomatic multiple myeloma with patients that exhibit the new SLiM criteria, it is certainly not a given that a patient will transform to having CRAB-based symptomatic multiple myeloma in 1-2 years. He would instead likely just closely monitor that patient until it was clear that end-organ damage might be starting.
One of the reasons for this strategy is based on the the hope that when one does transform to having CRAB-based multiple myeloma, that the patient would then have access to better and less toxic treatments than are available today.
Keep in mind that is just what my specialist would likely say. There are certainly other respected specialists who would argue for starting treatment earlier based on meeting one of the SLiM criteria.
In any case, I would direct you to the closing statement in this article about the criteria for a multiple myeloma diagnosis,
"Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests."
Lastly, I'd also point you to my own history as a high-risk smolderer and just how much my free light chain ratio has changed over time.
Hope this gives you some food for thought.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma after anti-TNF-alpha therapy
Multibilly, thanks for your reply.
I had my appointment with the myeloma specialist. He did admit that they would probably call it smoldering if I did not have cryoglobulinemia. Because of the cryoglobulinemia, they're calling it symptomatic multiple myeloma that requires treatment.
As for the anti-TNF-alpha drugs, despite some studies showing the opposite effect with a different, but similar, drug, Enbrel (etanercept), he said the Humira and Remicade should have actually helped the myeloma. He even said he unsuccessfully tried to get a study greenlit to evaluate these drugs for the treatment of myeloma. Essentially, he indirectly said my stopping Remicade was not going to improve my situation with regards to myeloma, and that he expected little change, good or bad.
Unfortunately they did not do genetic testing with the first bone marrow biopsy I had done, so now I have to have another one done next week. I also previously had a clean skeletal survey, but they're going to do a CT PET scan. Lastly, no one had previously tested my beta-2 microglobulin levels, so we're awaiting the results of that.
He wants to begin treatment as soon as possible with induction and tandem auto transplants, followed by maintenance. However, if they classify me as a lower risk and the PET scan is clean, I'm really thinking it's best to wait. The cryoglobulinemia only causes me problems in the winter, and I can work from home and keep warm.
It's a fluke I was even diagnosed at this stage, but perhaps I should feel lucky they found it now.
I have a four year old daughter and a stay-at-home mom who need me around as long as possible. I really need another 20-30 years. I have short- and long-term disability insurance, but I'm pretty worried about my career.
I had my appointment with the myeloma specialist. He did admit that they would probably call it smoldering if I did not have cryoglobulinemia. Because of the cryoglobulinemia, they're calling it symptomatic multiple myeloma that requires treatment.
As for the anti-TNF-alpha drugs, despite some studies showing the opposite effect with a different, but similar, drug, Enbrel (etanercept), he said the Humira and Remicade should have actually helped the myeloma. He even said he unsuccessfully tried to get a study greenlit to evaluate these drugs for the treatment of myeloma. Essentially, he indirectly said my stopping Remicade was not going to improve my situation with regards to myeloma, and that he expected little change, good or bad.
Unfortunately they did not do genetic testing with the first bone marrow biopsy I had done, so now I have to have another one done next week. I also previously had a clean skeletal survey, but they're going to do a CT PET scan. Lastly, no one had previously tested my beta-2 microglobulin levels, so we're awaiting the results of that.
He wants to begin treatment as soon as possible with induction and tandem auto transplants, followed by maintenance. However, if they classify me as a lower risk and the PET scan is clean, I'm really thinking it's best to wait. The cryoglobulinemia only causes me problems in the winter, and I can work from home and keep warm.
It's a fluke I was even diagnosed at this stage, but perhaps I should feel lucky they found it now.
I have a four year old daughter and a stay-at-home mom who need me around as long as possible. I really need another 20-30 years. I have short- and long-term disability insurance, but I'm pretty worried about my career.
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mondorondo - When were you/they diagnosed?: July 2016
- Age at diagnosis: 36
Re: Multiple myeloma after anti-TNF-alpha therapy
Just an update. I'm still postponing treatment for now. My autoimmune disease has returned with a vengeance, so my immune systems is definitely no longer suppressed.
I've been off of the biologic meds since the end of May now, and most of my lab results are trending favorably except for my kappa light chains, which just keep going up. Most notably, my M-protein went from 1.89 g/dL down to 0.46 g/dL, making me hopeful that my theory could be correct that my body is getting rid of the cell clone on its own.
I'll have more labs in a couple of weeks. If things are still trending favorably, I'll continue to postpone treatment, but if the light chains are still going up and everything else is stable or worsening, I'll probably go ahead and start treatment.
I've been off of the biologic meds since the end of May now, and most of my lab results are trending favorably except for my kappa light chains, which just keep going up. Most notably, my M-protein went from 1.89 g/dL down to 0.46 g/dL, making me hopeful that my theory could be correct that my body is getting rid of the cell clone on its own.
I'll have more labs in a couple of weeks. If things are still trending favorably, I'll continue to postpone treatment, but if the light chains are still going up and everything else is stable or worsening, I'll probably go ahead and start treatment.
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mondorondo - When were you/they diagnosed?: July 2016
- Age at diagnosis: 36
Re: Multiple myeloma after anti-TNF-alpha therapy
Mondorondo,
I just found your post while researching Remicade and multiple myeloma. Did you choose to do treatment and how has it gone?
My dad has been on Remicade for almost two years and yesterday when we found out about the multiple myeloma his doctor had mentioned that he thought the Remicade may be one of the factors in causing it.
I just found your post while researching Remicade and multiple myeloma. Did you choose to do treatment and how has it gone?
My dad has been on Remicade for almost two years and yesterday when we found out about the multiple myeloma his doctor had mentioned that he thought the Remicade may be one of the factors in causing it.
Re: Multiple myeloma after anti-TNF-alpha therapy
Apadams -
Just saw this post, and wanted to reply because my husband was treated very successfully with Remicade for about 6 years (from 2010-2016) for Crohn's disease, until he was unexpectedly diagnosed with multiple myeloma last January.
The first hematologist he saw strongly felt that Remicade (infliximab) had suppressed his immune system and prevented it from "fighting back" against the cancer, and pointed to those studies and reported links to lymphoma and some other blood cancers.
When we went for a second opinion, his myeloma specialist and the multiple GI doctors and immunology experts that I reached out to basically said it was possible, and we should probably err on the side of caution, but that we would never really know. It could be that his immune system is simply dysfunctional, hence both the Crohn's and the multiple myeloma.
Regardless, to be safe, we stopped Remicade before his stem cell transplant, which was very scary, as it had kept the Crohn's under control for so long. But the transplant oddly seemed to have a therapeutic effect on the Crohn's, and he is not yet having issues. When he does, his GI and multiple myeloma specialists have consulted and decided he will go onto Entyvio (vedolizumab), which is a more localized, gut-specific treatment for Crohn's, not a systemic immunosuppressant like Remicade.
Just saw this post, and wanted to reply because my husband was treated very successfully with Remicade for about 6 years (from 2010-2016) for Crohn's disease, until he was unexpectedly diagnosed with multiple myeloma last January.
The first hematologist he saw strongly felt that Remicade (infliximab) had suppressed his immune system and prevented it from "fighting back" against the cancer, and pointed to those studies and reported links to lymphoma and some other blood cancers.
When we went for a second opinion, his myeloma specialist and the multiple GI doctors and immunology experts that I reached out to basically said it was possible, and we should probably err on the side of caution, but that we would never really know. It could be that his immune system is simply dysfunctional, hence both the Crohn's and the multiple myeloma.
Regardless, to be safe, we stopped Remicade before his stem cell transplant, which was very scary, as it had kept the Crohn's under control for so long. But the transplant oddly seemed to have a therapeutic effect on the Crohn's, and he is not yet having issues. When he does, his GI and multiple myeloma specialists have consulted and decided he will go onto Entyvio (vedolizumab), which is a more localized, gut-specific treatment for Crohn's, not a systemic immunosuppressant like Remicade.
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Multiple myeloma after anti-TNF-alpha therapy
Hi Texgal,
Both autologous and allogeneic transplants are used for severe Crohn's disease.
This article discusses autologous transplantation for Crohn's:
Burt, RK, et al, "Autologous nonmyeloablative hematopoietic stem cell transplantation in patients with severe anti-TNF refractory Crohn disease: long-term follow-up", Blood, 2010 (abstract & full text of article)
This article discusses allogeneic transplantation for Crohn's:
Briggs, Bill, "'Got my life back': Bone marrow transplant shows promise as Crohn's disease cure," Fred Hutch News Service, July 8, 2015 (full text of article)
Mark
Both autologous and allogeneic transplants are used for severe Crohn's disease.
This article discusses autologous transplantation for Crohn's:
Burt, RK, et al, "Autologous nonmyeloablative hematopoietic stem cell transplantation in patients with severe anti-TNF refractory Crohn disease: long-term follow-up", Blood, 2010 (abstract & full text of article)
This article discusses allogeneic transplantation for Crohn's:
Briggs, Bill, "'Got my life back': Bone marrow transplant shows promise as Crohn's disease cure," Fred Hutch News Service, July 8, 2015 (full text of article)
Mark
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Mark11
Re: Multiple myeloma after anti-TNF-alpha therapy
I have been diagnosed with MGUS. I was on Enbrel (etanercept) for psoriasis in the 2 years prior to my MGUS diagnosis. Prior to that, I had used Humira (adalimumab) for a short time. I stopped Enbrel after my MGUS diagnosis. My labs are currently stable.
How are you doing?
How are you doing?
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tcmill - Name: tcmill
- When were you/they diagnosed?: mgus
- Age at diagnosis: 54
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