I was diagnosed with multiple myeloma about ten and a half years ago. I reached a complete response on Velcade, Revlimid, and dexamethasone (VRD) and was in a remissive state and in 2012 was taken off of Revlimid. As maintenance, I received a Velcade shot once every 2 weeks and took 8 mg of dex with each shot.
That continued until about August of 2014, when I went out of remission. That is when my serum free light chain (sFLC) numbers started a slow creep for 3 years, culminating in my kappa hitting 116.69 and my ratio up to 42. I never had a stem cell transplant and have never had any different cancer drugs other than VRD, although I have taken Aredia (pamidronate) once every 3 months during the entire time and have been on monthly IVIG.
What my oncologist did for my relapse was simply add back in Revlimid, first 5 mg, then increased it 10 mg on 21 days and off 7, and increase the Velcade to every week and the dex to 20 mg every week. The result was a lowering of my free light chain numbers, which have held fairly well ever since. The kappa level has fluctuated between 60.3 and 41.84, lambda between 5.4 and 7.89, and the ratio between 5.65 and 11.15.
I have never had much of an M-spike, and it fluctuates between 0.1 and 0.2 g/dL. No additional bone lesions. I am slightly anemic, and my white count is slightly below normal. My immunoglobulin's are low except for the IgG, which is in the normal range due to the IVIG infusions.
The reason I bring this up is that my oncologist said that my long term stability is experienced by between 15% to 20% of patients, who may stay in that state for years. Maybe my biking has helped as I am in good physical shape despite the rigors of treatment.
I note that Beaon columnist April Nelson mentioned something similar in one of her columns and I have wondered if others have had a similar experience.
Of course, mye situation may change, but for whatever reason, my multiple myeloma is slow in reacting and seems to respond. My oncologist wants to milk every possible month out of the VRD before moving on to something else.
Stability is not being myeloma free but managing the disease. The treatments are being tolerated although I wish I could drop the dex.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Stable but not disease free
Thank you. I was recently diagnosed and have started aggressive treatment. No one discussed a more conservative option.
Last week, to my surprise, I heard a story similar to yours while meeting with some other myeloma patients. It seems odd that this isn’t mentioned more often if it’s the experience of 15-20% of myeloma patients.
Last week, to my surprise, I heard a story similar to yours while meeting with some other myeloma patients. It seems odd that this isn’t mentioned more often if it’s the experience of 15-20% of myeloma patients.
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philget - Name: Larry Phillipps
- Who do you know with myeloma?: I was diagnosed with SMM
- When were you/they diagnosed?: 4/19/2019
- Age at diagnosis: 72
Re: Stable but not disease free
Hi Ron,
It was good to read your update and see that your disease is stable.
I believe there was a study published maybe 5 years ago by Spanish researchers that discussed how some patients, after initial treatment, experience an extended period of stable disease with a positive M-spike (or elevated kappa/lambda ratio in the case of patients with light chain disease). My recollection is that researchers described these patients as experiencing "MGUS-like" disease for an extended period of time after initial treatment.
What's all the more noteworthy is that the data the researchers were looking at was from a time when maintenance therapy was uncommon. That is, they observed patients experiencing this extended MGUS-like state without any ongoing treatment.
Of course, this isn't all that surprising to those of us who can remember when continuous treatment of myeloma was uncommon, and patients regularly experienced multiple-year remissions without continous treatment. People these days, however, seem to forget that myeloma doesn't automatically advance if you've undergone treatment and then go off treatment.
P.S. - I tried to locate the Spanish study, but didn't have any luck. Perhaps I'm mistaken and it wasn't by researchers in Spain. Or maybe I'm remembering a couple different studies as one single study. Maybe someone else here remembers the paper, which I believe the Beacon covered in a news story.
It was good to read your update and see that your disease is stable.
I believe there was a study published maybe 5 years ago by Spanish researchers that discussed how some patients, after initial treatment, experience an extended period of stable disease with a positive M-spike (or elevated kappa/lambda ratio in the case of patients with light chain disease). My recollection is that researchers described these patients as experiencing "MGUS-like" disease for an extended period of time after initial treatment.
What's all the more noteworthy is that the data the researchers were looking at was from a time when maintenance therapy was uncommon. That is, they observed patients experiencing this extended MGUS-like state without any ongoing treatment.
Of course, this isn't all that surprising to those of us who can remember when continuous treatment of myeloma was uncommon, and patients regularly experienced multiple-year remissions without continous treatment. People these days, however, seem to forget that myeloma doesn't automatically advance if you've undergone treatment and then go off treatment.
P.S. - I tried to locate the Spanish study, but didn't have any luck. Perhaps I'm mistaken and it wasn't by researchers in Spain. Or maybe I'm remembering a couple different studies as one single study. Maybe someone else here remembers the paper, which I believe the Beacon covered in a news story.
Re: Stable but not disease free
Hi Ron,
EJ has had a somewhat similar experience. He was diagnosed 9 years ago. His induction therapy was Velcade and dex, and he had a stem cell transplant nine months after his diagnosis. After his stem cell transplant, his M-spike stabilized at 0.1 g/dl (1 g/l). He didn't go on maintenance, and was off medicine until four years ago, when his M-spike rose back to 1 g/dl. Ninlaro had just been approved when he relapsed, so he opted to try that rather than the Velcade, just for the quality of life and flexibility it gave him. He did 10 months on the Ninlaro, Revlimid, and dex when he plateaued at 0.2 g/dl. They took him off the Ninlaro and dex, and he's been on the Revlimid for maintenance for almost three years. His M-spike is now 0. He's had to lower the Revlimid dosage because his red and white blood cells were getting too low, but other than that, he has been doing great! Just the usual side effects from the Revlimid.
I had not heard about the long-term stability. Thank you for sharing.
Lyn
EJ has had a somewhat similar experience. He was diagnosed 9 years ago. His induction therapy was Velcade and dex, and he had a stem cell transplant nine months after his diagnosis. After his stem cell transplant, his M-spike stabilized at 0.1 g/dl (1 g/l). He didn't go on maintenance, and was off medicine until four years ago, when his M-spike rose back to 1 g/dl. Ninlaro had just been approved when he relapsed, so he opted to try that rather than the Velcade, just for the quality of life and flexibility it gave him. He did 10 months on the Ninlaro, Revlimid, and dex when he plateaued at 0.2 g/dl. They took him off the Ninlaro and dex, and he's been on the Revlimid for maintenance for almost three years. His M-spike is now 0. He's had to lower the Revlimid dosage because his red and white blood cells were getting too low, but other than that, he has been doing great! Just the usual side effects from the Revlimid.
I had not heard about the long-term stability. Thank you for sharing.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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