My husband (55) has been in remission for 2,5 years since his first autologous stem cell transplant (ASCT). He has light chain myeloma and his levels have slowly but steadily been creeping up from the normal range to 325 now at the last test in December. He has been feeling in great shape and with no pain.
At the visit to the doctor in December, it was decided that it was necessary to restart treatment, because of increasing creatinine levels - but only in the last two lab results. In October the creatinine was 106 micromol/L and in December 116/micromol. Otherwise all the lab results were still fine. And now I see that the IMWG criteria for diagnosing myeloma says >177 micromol/L.
Does this mean that a decision to restart treatment has been taken prematurely? Are there specific diagnostic criteria for relapse situations? What are the criteria for starting treatment again after a remission?
This makes me really worried. My husband was started on the induction treatment right away after the doctor's visit in December, and is set for salvage ASCT in a few months. He is already feeling very ill from the induction treatment. I hope someone can help me sort this out. I need to know more about what the diagnostic criteria are in order to have an informed discussion with the doctor about this.
Many thanks,
M
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Re: When to start salvage treatment?
Two questions, Mour:
1. Has your husband been on maintenance?
2. What country are you in?
1. Has your husband been on maintenance?
2. What country are you in?
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JPC - Name: JPC
Re: When to start salvage treatment?
He has not been on maintenance, but received three months of consolidation treatment with Revlimid after his first ASCT. The consolidation treatment was more than two years ago.
We live in Norway.
We live in Norway.
Re: When to start salvage treatment?
Thank you, Mour:
With regards to light chain expressing multiple myeloma, I am somewhat less knowledgeable on that topic, but will offer the following general comments.
30 months without maintenance after initial induction and ASCT is considered, I think, somewhat satisfactory. From my reading, I do believe that northern Europe is one of the regions that rely on ASCT a bit more than other regions, and so I think that is not surprising to hear that they want to do it again. I think that the idea was since you got 30 months the first time with ASCT, that it "worked", and they think it might work again. Another issue is did your husband tolerate it well the first time. Was it a torture, or did he skate through it?
In other regions, however, I think that they would not be so fast to jump to ASCT, especially since your husband is asymptomatic. It is important, however, to treat before symptoms kick in. The key, I think, is to see if there are any newer regimens or combos that you could use that would be better than the first time around. Say, for instance, since it is relapse, could you bring Kyprolis into the mix. If you could potentially get back to CR with induction, then I think that in many locations they would consider an ASCT as an option, but not mandatory.
Two more points: After the line of treatment (whatever it is), talk to your doctor about maintenance. Between then and now, maintenance has become much more utilized. Lastly, I know it's not yet approved in Norway, but look for clinical trials for elotuzumab and daratumumab, if not today, for shortly down the road. Good luck.
With regards to light chain expressing multiple myeloma, I am somewhat less knowledgeable on that topic, but will offer the following general comments.
30 months without maintenance after initial induction and ASCT is considered, I think, somewhat satisfactory. From my reading, I do believe that northern Europe is one of the regions that rely on ASCT a bit more than other regions, and so I think that is not surprising to hear that they want to do it again. I think that the idea was since you got 30 months the first time with ASCT, that it "worked", and they think it might work again. Another issue is did your husband tolerate it well the first time. Was it a torture, or did he skate through it?
In other regions, however, I think that they would not be so fast to jump to ASCT, especially since your husband is asymptomatic. It is important, however, to treat before symptoms kick in. The key, I think, is to see if there are any newer regimens or combos that you could use that would be better than the first time around. Say, for instance, since it is relapse, could you bring Kyprolis into the mix. If you could potentially get back to CR with induction, then I think that in many locations they would consider an ASCT as an option, but not mandatory.
Two more points: After the line of treatment (whatever it is), talk to your doctor about maintenance. Between then and now, maintenance has become much more utilized. Lastly, I know it's not yet approved in Norway, but look for clinical trials for elotuzumab and daratumumab, if not today, for shortly down the road. Good luck.
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JPC - Name: JPC
Re: When to start salvage treatment?
I do not know terminology well but my wife had multiple treatments, transplant and numerous combination treatments, before they started using that word, salvage.
Re: When to start salvage treatment?
Good day Lime:
I do not think I know the exact definition of salvage (and maybe there is not one), but in general, it means going to a different type of treatment after becoming refractory to the preferred treatment. From my reading, salvage can mean almost anything, but its after something else has stopped working.
One more point for Mour, that I neglected to mention. Pls make sure that you are up to speed on your latest FISH results. More importantly, your doctor is up to speed, and he (she) would know how to read/interpret them. Cytogenetics are only partially understood by the very best doctors, but in some cases, an experienced myeloma specialist will be able to navigate the treatment based on those results. In general, bad cytogenetics suggest more aggressive treatments, and favorable (standard risk) might suggest potentially less aggressive treatment.
Good luck.
I do not think I know the exact definition of salvage (and maybe there is not one), but in general, it means going to a different type of treatment after becoming refractory to the preferred treatment. From my reading, salvage can mean almost anything, but its after something else has stopped working.
One more point for Mour, that I neglected to mention. Pls make sure that you are up to speed on your latest FISH results. More importantly, your doctor is up to speed, and he (she) would know how to read/interpret them. Cytogenetics are only partially understood by the very best doctors, but in some cases, an experienced myeloma specialist will be able to navigate the treatment based on those results. In general, bad cytogenetics suggest more aggressive treatments, and favorable (standard risk) might suggest potentially less aggressive treatment.
Good luck.
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JPC - Name: JPC
Re: When to start salvage treatment?
Mourwarid, I don't know if restarting treatment is premature, but creatinine levels can rise quickly.
In April 2014 a routine blood test showed my creatinine level was 86. Normal range is 35-97 mmol/L. Four months later I had another blood test and the creatinine level was over 600! I was in renal failure. I was diagnosed with multiple myeloma a few days later in hospital.
I am fairly sure that most of the rise to 600 occurred in the space of two months when I became very lethargic. I had been full of energy before that.
In April 2014 a routine blood test showed my creatinine level was 86. Normal range is 35-97 mmol/L. Four months later I had another blood test and the creatinine level was over 600! I was in renal failure. I was diagnosed with multiple myeloma a few days later in hospital.
I am fairly sure that most of the rise to 600 occurred in the space of two months when I became very lethargic. I had been full of energy before that.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: When to start salvage treatment?
Hello Mourwarid,
I have the light chain myeloma, too. It was discovered during the routine blood test because of a high protein level in the urine test. I had no symtoms of any kind, no fatigue or joint or muscle pain. My Kappa level was 1,070 at the time my RVD (Revlimid, Velcade, dexamethasone) treatment was started on December 17, 2014. I seemed to have responded well to the induction treatment (lost two months due to a nasty flu, though) and I am currently transitioning to the maintenance treatment of reduced dose of Revlimid only. I assume the term salvage treatment refers to maintenance treatment.
I made a decision not to undergo any transplant, based on my cytogenetics and based on the mSMART guidelines (from the Mayo Clinic). I had my Kappa around 12.5 (3.3 - 19.4 Normal Range) and K/L around 1.1 (0.26 - 1.65 Normal Range) before my oncologist decided to 'taper' my down my induction treatment doses, first stopping the Velcade and later stopping the dex. My Revlimid dose may be readjusted after a few more blood test results conducted every four (4) weeks, since my Kappa has risen to almost 28 and the K/L is 1.87.
All throughout these last 13 or 14 months, my creatinine has been normal; 0.93 - 1.015 mg/dL (normal <= 1.34 mg/dL). I think the Kappa reading of 325 (from the normal range, i.e. from below 19.4) is more an indication of the monoclonal activity, though. Of course, the K/L reading would be an indicator of that, too.
As JPC pointed out, the maintenance therapy is a standard treatment for any type of relapse. I have read about quite a few patients that responded to some' long-term survival' questions and know of a few others that have gone on for over 15 years on maintenance. Dan from Arizona had a relapse recently and I believe his induction treatment was back in the 1980's!! If I remember it correctly, his stem cells that he had harvested at the time (just after the induction treatment) were past their 20 +/- year 'shelf life' when he had a relapse.
I am not a medical professional and I have focused on the articles on light chain myeloma, IgG Kappa type, in particular. My creatinine has not been a concern but my protein/creatinine ratio was very high in the beginning, though.
Wish you all the best.
K_Shash
I have the light chain myeloma, too. It was discovered during the routine blood test because of a high protein level in the urine test. I had no symtoms of any kind, no fatigue or joint or muscle pain. My Kappa level was 1,070 at the time my RVD (Revlimid, Velcade, dexamethasone) treatment was started on December 17, 2014. I seemed to have responded well to the induction treatment (lost two months due to a nasty flu, though) and I am currently transitioning to the maintenance treatment of reduced dose of Revlimid only. I assume the term salvage treatment refers to maintenance treatment.
I made a decision not to undergo any transplant, based on my cytogenetics and based on the mSMART guidelines (from the Mayo Clinic). I had my Kappa around 12.5 (3.3 - 19.4 Normal Range) and K/L around 1.1 (0.26 - 1.65 Normal Range) before my oncologist decided to 'taper' my down my induction treatment doses, first stopping the Velcade and later stopping the dex. My Revlimid dose may be readjusted after a few more blood test results conducted every four (4) weeks, since my Kappa has risen to almost 28 and the K/L is 1.87.
All throughout these last 13 or 14 months, my creatinine has been normal; 0.93 - 1.015 mg/dL (normal <= 1.34 mg/dL). I think the Kappa reading of 325 (from the normal range, i.e. from below 19.4) is more an indication of the monoclonal activity, though. Of course, the K/L reading would be an indicator of that, too.
As JPC pointed out, the maintenance therapy is a standard treatment for any type of relapse. I have read about quite a few patients that responded to some' long-term survival' questions and know of a few others that have gone on for over 15 years on maintenance. Dan from Arizona had a relapse recently and I believe his induction treatment was back in the 1980's!! If I remember it correctly, his stem cells that he had harvested at the time (just after the induction treatment) were past their 20 +/- year 'shelf life' when he had a relapse.
I am not a medical professional and I have focused on the articles on light chain myeloma, IgG Kappa type, in particular. My creatinine has not been a concern but my protein/creatinine ratio was very high in the beginning, though.
Wish you all the best.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
8 posts
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