Thank you, JPC and Nancy for your replies.
My mother's 8th cycle results have just come in and the spike has just risen again from 8.7 g/L (0.87 g/dL) to 9,4 g/L (0,94 g/dL).
I am wondering if the plateau can sometimes be accompanied by a slight increase to reach a somewhat stable number?
My concern is that the number keeps rising.
What is odd is that all the light chains are in the right values and the free light chain ratio too. Everything else seems pretty normal. Wouldn't my mom be having other values going wrong if she was becoming refractory?
It is so early for her to become refractory. And there are not many options out there once we've done the traditional ones (Velcade, etc.). The monoclonal antibodies are still not on the market here.
Forums
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hello Maro:
I just read article about the European approval of Darzalex, and there are still more hurdles to cross before it's actually prescribed in each country, and it's for the later stages in the disease progression. However, I have a research item for you to ask you mother's doctors.
I recall that your mother was on the Darzalex clinical trial in France, but in the non-Darzalex arm (n'est pa?). I had read that one of the Darzalex trials going on in France was terminated due to the data being so good for Darzalex, it was not necessary to extend the trial any further. In many of those cases, the new experimental drug is offered to the other arm. So see if you are eligible for that for your mother. If yes, they may give it with the dex and the Revlimid, where it would potentially be more active than a monotherapy. In any case, good luck to you both as you research, consider the next step.
As to your M-spike questions, there is M-spike dominated myeloma, where there is zero or relatively little involvement in the light chains. That actually is a good thing in that it's the light chains that damage the kidneys. Also, just from my casual reading, the pace at which the M-spike rises is impossible to predict. If it goes up at a slow steady pace, then it may be a while, but if it starts to accelerate, then at that point a second line of treatment would need to be started.
Good luck to you both.
I just read article about the European approval of Darzalex, and there are still more hurdles to cross before it's actually prescribed in each country, and it's for the later stages in the disease progression. However, I have a research item for you to ask you mother's doctors.
I recall that your mother was on the Darzalex clinical trial in France, but in the non-Darzalex arm (n'est pa?). I had read that one of the Darzalex trials going on in France was terminated due to the data being so good for Darzalex, it was not necessary to extend the trial any further. In many of those cases, the new experimental drug is offered to the other arm. So see if you are eligible for that for your mother. If yes, they may give it with the dex and the Revlimid, where it would potentially be more active than a monotherapy. In any case, good luck to you both as you research, consider the next step.
As to your M-spike questions, there is M-spike dominated myeloma, where there is zero or relatively little involvement in the light chains. That actually is a good thing in that it's the light chains that damage the kidneys. Also, just from my casual reading, the pace at which the M-spike rises is impossible to predict. If it goes up at a slow steady pace, then it may be a while, but if it starts to accelerate, then at that point a second line of treatment would need to be started.
Good luck to you both.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Thank you, JPC. As usual you raise good points and give good ideas. I will try to see if we can add Darzalex to her treatment and let you know.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Bonjour Maro.
Thanks for posting your mother's lab results. As you probably know, I am the same age as her, and on the same treatments too. I re-started treatments when my M-spike was at 11.1 g/l (1.11 g/dL). (I know that one shouldn't directly compare one's results to others though, this is just FYI) I had not started treatments again until after one of my daughter's weddings, which turned out to be fine. Waited four months instead of three months for that.
Since we check the results every month, because I am on Revlimid, and I always get a copy of my lab results, I can see how the results are trending. My results have plateaued at times, for the M protein, but then gone down again. Once the serum free light chain level got slightly out of range, and my doctor said that if he doubled the 'dex' for awhile that could help perhaps, but we didn't need to do that. Another treatment I could re-try would be Velcade (bortezomib), given by subcutaneous injection instead of IV. Originally I had it by IV as induction chemo, and still have faint sensations in my toes from that. I would be willing to try subcutaneous Velcade if the Revlimid didn't work any more.
We are waiting for new drug approvals in Canada also, and this is encouraging. We think that Kyprolis is close to being funded and that Darzalex will hopefully soon be wending it's way through the regulatory process. This really gives me hope as a patient that I can continue on with my life, with new treatments if necessary. Also, some patients undergo a first or second stem cell transplant. These have been shown to help patients too. Did you read the Myeloma Morning article earlier this week about autologous stem cell transplant and older patients? (I had a stem cell transplant in 2010.)
Best wishes to you and your Mom.
Thanks for posting your mother's lab results. As you probably know, I am the same age as her, and on the same treatments too. I re-started treatments when my M-spike was at 11.1 g/l (1.11 g/dL). (I know that one shouldn't directly compare one's results to others though, this is just FYI) I had not started treatments again until after one of my daughter's weddings, which turned out to be fine. Waited four months instead of three months for that.
Since we check the results every month, because I am on Revlimid, and I always get a copy of my lab results, I can see how the results are trending. My results have plateaued at times, for the M protein, but then gone down again. Once the serum free light chain level got slightly out of range, and my doctor said that if he doubled the 'dex' for awhile that could help perhaps, but we didn't need to do that. Another treatment I could re-try would be Velcade (bortezomib), given by subcutaneous injection instead of IV. Originally I had it by IV as induction chemo, and still have faint sensations in my toes from that. I would be willing to try subcutaneous Velcade if the Revlimid didn't work any more.
We are waiting for new drug approvals in Canada also, and this is encouraging. We think that Kyprolis is close to being funded and that Darzalex will hopefully soon be wending it's way through the regulatory process. This really gives me hope as a patient that I can continue on with my life, with new treatments if necessary. Also, some patients undergo a first or second stem cell transplant. These have been shown to help patients too. Did you read the Myeloma Morning article earlier this week about autologous stem cell transplant and older patients? (I had a stem cell transplant in 2010.)
Best wishes to you and your Mom.
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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: Is this a good response to Revlimid and dexamethasone?
Merci Nancy for your reply 
It is encouraging to hear that sometimes the spike can stagnate before going back down. However here it's going up so I am not sure if it can go back down though I do hope for that.
Regarding the transplant the doctors here stop it at age 65. Mom is 66 now and the doctor already said it will not be an option in the future. Mind you, my mom really did not want to do it.
Hopefully Darzalex and other meds will be available soon. Darzalex was actually approved by the European Commission yesterday. Kyprolis is already approved and in use in France but I have read that it is really very heavy on the heart and has some dangerous adverse effects..
Guess I'll wait for next appointment to know what to do.
Many thanks to all for your feedback.
Maro
It is encouraging to hear that sometimes the spike can stagnate before going back down. However here it's going up so I am not sure if it can go back down though I do hope for that.
Regarding the transplant the doctors here stop it at age 65. Mom is 66 now and the doctor already said it will not be an option in the future. Mind you, my mom really did not want to do it.
Hopefully Darzalex and other meds will be available soon. Darzalex was actually approved by the European Commission yesterday. Kyprolis is already approved and in use in France but I have read that it is really very heavy on the heart and has some dangerous adverse effects..
Guess I'll wait for next appointment to know what to do.
Many thanks to all for your feedback.
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hello, JPC.
I am particularly interested in your comment that "there is M-spike dominated myeloma, where there is zero or relatively little involvement in the light chains."
The statement is in line with what my oncologist said to me a few days ago without much elaboration, i.e., that in my case she is looking at the M-spike and my IgA numbers and is not too concerned about my light chain numbers, which from the very beginning have been pretty much normal. Are there any journal articles discussing this issue that you have read?
I am particularly interested in your comment that "there is M-spike dominated myeloma, where there is zero or relatively little involvement in the light chains."
The statement is in line with what my oncologist said to me a few days ago without much elaboration, i.e., that in my case she is looking at the M-spike and my IgA numbers and is not too concerned about my light chain numbers, which from the very beginning have been pretty much normal. Are there any journal articles discussing this issue that you have read?
Re: Is this a good response to Revlimid and dexamethasone?
Hello Mrozdav:
I am not sure that I can come up with articles on "short notice", however, I am quite sure that it has been more than one doctor that has mentioned to me regarding the fact that, in some cases, the disease status and progression is defined predominately by the M-spike. I might be able to dig up an article on that topic, I will let you know. However, it is quite true that for my wife's case, that the clone produces IgG (the involved immunoglobulin), and that other immunoglobulins and light chains move insignificantly in comparison to the involved immunoglobulin. Good luck.
I am not sure that I can come up with articles on "short notice", however, I am quite sure that it has been more than one doctor that has mentioned to me regarding the fact that, in some cases, the disease status and progression is defined predominately by the M-spike. I might be able to dig up an article on that topic, I will let you know. However, it is quite true that for my wife's case, that the clone produces IgG (the involved immunoglobulin), and that other immunoglobulins and light chains move insignificantly in comparison to the involved immunoglobulin. Good luck.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
My mother's last results just came out.
Spike has gone from 9 g (0.9 g/dl) to 18 g (1.8 g/dl), it has doubled in just 1 month while she was on Revlimid + dex.
Doctor suggesting we switch to Velcade.
Had purchased tickets to take mom on holiday 3 weeks abroad by the sea end of July ...
My mom has t(14;16).
We're in for a hard incoming journey ...
Spike has gone from 9 g (0.9 g/dl) to 18 g (1.8 g/dl), it has doubled in just 1 month while she was on Revlimid + dex.
Doctor suggesting we switch to Velcade.
Had purchased tickets to take mom on holiday 3 weeks abroad by the sea end of July ...
My mom has t(14;16).
We're in for a hard incoming journey ...
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro.
So, if you switch to Velcade subcutaneous, you probably need to be near your oncologist and that is why you need to cancel the 3 week vacation if your mother changes to Velcade?
I have multiple myeloma and I would personally want to go on that vacation even if I had to postpone changing my treatment to Velcade. The fun and sun and relaxation would be therapeutic.
Just my thoughts.
Cathy
So, if you switch to Velcade subcutaneous, you probably need to be near your oncologist and that is why you need to cancel the 3 week vacation if your mother changes to Velcade?
I have multiple myeloma and I would personally want to go on that vacation even if I had to postpone changing my treatment to Velcade. The fun and sun and relaxation would be therapeutic.
Just my thoughts.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Is this a good response to Revlimid and dexamethasone?
Hi antelope1225
Thank you for your reply.
I so want to take my mother abroad with my wife and 14 month old baby. I know it will be great for her. I am just unsure how and if the doctor will allow it. I may be mistaken, but if her spike went from 9 to 18 g/l (0.9 to 1.8 g/dL) in 1 month and our trip isn't til 28th of July, how do we do it?
If I postpone til our return on 18th of August, I would be taking the risk of dealing with a 40 g/l (4.0 g/dl) spike. And If she starts treatment next week, can she just have a break for 3 weeks before holiday?
Has anyone been able to arrange for it to work out this way? I'll know more when I see the doctor next week I guess.
But you are right antelope1225, I truly believe the holidays in Cyprus by the beach will be great for her.
Thank you for your reply.
I so want to take my mother abroad with my wife and 14 month old baby. I know it will be great for her. I am just unsure how and if the doctor will allow it. I may be mistaken, but if her spike went from 9 to 18 g/l (0.9 to 1.8 g/dL) in 1 month and our trip isn't til 28th of July, how do we do it?
If I postpone til our return on 18th of August, I would be taking the risk of dealing with a 40 g/l (4.0 g/dl) spike. And If she starts treatment next week, can she just have a break for 3 weeks before holiday?
Has anyone been able to arrange for it to work out this way? I'll know more when I see the doctor next week I guess.
But you are right antelope1225, I truly believe the holidays in Cyprus by the beach will be great for her.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
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