Hello all,
My partner and I have learned a great deal from this forum and really appreciate how much information and support is shared. This is my first post, though, so I thought I'd start by an introduction!
My partner was diagnosed in October 2017 with IgA kappa multiple myeloma after a workplace back injury, which progressively got worse until he was unable to walk. When we succeeded in getting an MRI, the doctors were shocked he wasn't in worse condition. An 80% collapse of L5 due to the tumour. He was immediately admitted to the emergency room (ER).
After a few days, the diagnosis became apparent (much to everyone's surprise: multiple myeloma in someone so young!?), and the first step was stabilizing the spine. He underwent surgery with implantation of rods in the spinal segments above and below. As soon as his wounds had healed enough, he had 5 days of radiation and soon started induction: four cycles of Revlimid, Velcade, and dexamethasone (RVD), and one cycle of cyclophosphamide, Velcade, and dexamethasone (CyBorD). He had an autologous stem cell transplant in April 2018, which was complication-free.
Unfortunately the transplant didn't put him into remission, and his M-protein has been gradually climbing. The lowest we got was 3 g/L (0.3 g/dl). Interestingly, his markers were never terribly high (highest was 15 g/L, or 1.5 g/dL). If he didn't have the plasmacytoma and other lytic lesions, his classification would be on the border of MGUS and smoldering (<10% myeloma cells on bone marrow biopsy and a beta 2 microglobulin within normal range).
Currently, he's doing quite well despite numbers climbing: IgA of 20 (0.7-4.0 g/L) and M-spike (there are 2 closely migrating proteins) totals 13 g/L (1.3 g/dl). He is mildly neutropenic and anemic, but no infections and no complaints of fatigue. Mobility is improved since the surgery, although still limited to brief times on his feet and he requires walking poles for any short jaunts.
At this stage, Darzalex has been approved for relapse in British Columbia, so we're grateful that's available, but there's always the consideration of another transplant (they collected enough stem cells for four).. It's my understanding that In Canada they no longer consider doing allogeneic stem cell transplants, although in someone so young I wonder about this.
Anyhow, that's a bit of our story. Look forward to "meeting" some of you in conversation!
Forums
4 posts
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nic1 - Name: Nic1986
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 2017
- Age at diagnosis: 30
Re: Diagnosed at 30 with IgA kappa
Welcome to the forum, Nic1. I am sorry to hear that your partner was discovered to have myeloma at such a young age and also after having serious injuries.
In addition to Darzalex, there also are other drugs such as Revlimid, Pomalyst, Kyprolis and other combinations that are approved in British Columbia, so hopefully he can be treated successfully too.
In regard to why allogeneic transplants are not routinely offered, I think that is because they are considered to have quite a high chance of getting graft-host disease. They are used, however, in other blood cancers where autologous stem cell transplants cannot be done.
This is a question for your oncologist to answer though! When I was first diagnosed in 2009, allogeneic transplants were used for some patients, but you don't hear of that much anymore.
Hope that helps, and good luck with everything.
In addition to Darzalex, there also are other drugs such as Revlimid, Pomalyst, Kyprolis and other combinations that are approved in British Columbia, so hopefully he can be treated successfully too.
In regard to why allogeneic transplants are not routinely offered, I think that is because they are considered to have quite a high chance of getting graft-host disease. They are used, however, in other blood cancers where autologous stem cell transplants cannot be done.
This is a question for your oncologist to answer though! When I was first diagnosed in 2009, allogeneic transplants were used for some patients, but you don't hear of that much anymore.
Hope that helps, and good luck with everything.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Diagnosed at 30 with IgA kappa
Hi Nancy,
Thanks for the welcome. It's encouraging to see you're doing well a decade after diagnosis!
We're optimistic with so many new treatments available that he will have lots of options. For now, we're enjoying the drug-free holiday.
We actually saw his oncologist last week and asked about the allogeneic transplant options. She was willing to facilitate a visit to a Seattle centre where they still perform allogeneic transplants for myeloma, but she doesn't feel comfortable recommending this route with such high mortality rates (graft vs. host disease, infection, etc.).
Appreciate your thoughts!
Nicole
Thanks for the welcome. It's encouraging to see you're doing well a decade after diagnosis!
We're optimistic with so many new treatments available that he will have lots of options. For now, we're enjoying the drug-free holiday.
We actually saw his oncologist last week and asked about the allogeneic transplant options. She was willing to facilitate a visit to a Seattle centre where they still perform allogeneic transplants for myeloma, but she doesn't feel comfortable recommending this route with such high mortality rates (graft vs. host disease, infection, etc.).
Appreciate your thoughts!
Nicole
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nic1 - Name: Nic1986
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 2017
- Age at diagnosis: 30
Re: Diagnosed at 30 with IgA kappa
Thanks Nic1,
Yes, despite everything, I have managed to be here after ten years. I also had lytic lesions and vertebral fractures, which led to my diagnosis. The pain from that was very intense. My 'M' protein was 58 g/l (5.8 g/dL), and my bone marrow was 50% full of myeloma cells. I had an autologous stem cell transplant and have taken Revlimid, Velcade, and dex in varying combinations. In those days, the prognosis was not as good, and I was just praying to make it to a five-year survival. So definitely treatments have improved and people are more optimistic now.
Good luck with everything and I hope that your partner's mobility improves and that he can stay at a low level of disease burden.
Yes, despite everything, I have managed to be here after ten years. I also had lytic lesions and vertebral fractures, which led to my diagnosis. The pain from that was very intense. My 'M' protein was 58 g/l (5.8 g/dL), and my bone marrow was 50% full of myeloma cells. I had an autologous stem cell transplant and have taken Revlimid, Velcade, and dex in varying combinations. In those days, the prognosis was not as good, and I was just praying to make it to a five-year survival. So definitely treatments have improved and people are more optimistic now.
Good luck with everything and I hope that your partner's mobility improves and that he can stay at a low level of disease burden.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
4 posts
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