Hi Maro,
There are cases of patients who have long-term disease-free remissions in the literature (10 years plus). The ones I have seen in the literature mostly all involve either an autologous transplant as part of upfront therapy or allogeneic transplant. The allos are usually part of upfront therapy, though I know of one patient who did an allo after relapsing soon after upfront tandem autos who has been in a continuous drug free remission for around 20 years. There is another patient I know who is a 20-year survivor and never did a transplant. He has mentioned that he uses imaging results to determine when to restart treatment, showing that he does take therapy breaks. There are more, but most peer-reviewed studies do not have long term (greater than 10 year follow up) so they are typically just stories of individual patients.
I think I have mentioned this before, but a former neighbor of my parents second wife did an auto for myeloma more than 8 and a half years ago, has used no maintenance, and has never relapsed. I saw her at a Christmas party and to give everyone an idea of how well she is doing, she spent 2 days last year at medical providers due to having myeloma. She went once to see her specialist and once to a local hospital for blood work. No imaging tests or any other reason to go. She has an excellent quality of life.
There are examples of patients who are cured of myeloma via allo transplant. Well known myeloma specialist Dr. Ken Anderson has mentioned on multiple occasions that he has a patient over 30 years in continuous remission after doing an allo. So has well known myeloma specialist Dr. Cavo from Italy.
Given that your mothers' induction was Revlimid and dex, you have to be realistic about the potential for a long-term drug-free remission, as that is not an induction therapy that is associated with long-term drug-free remissions.
Mark
Forums
Re: Is this a good response to Revlimid and dexamethasone?
@ Mark: Your last paragraph makes me feel guilty. My mother is 65 years old. She can still have a stem cell transplant. She was too scared to do it that, when the doctor offered to try Revlimid and dex, we took that option.
Do you believe we should change strategy?
Are her chances really lower if she does not go through a stem cell transplant?
And what if a CR is achieved with Revlimid and dex? Does this mean that all those ineligible SCT patients have a worse outcome?
A lot of questions arise based on your explanations. Have we chosen the wrong path?
Please advise.
Do you believe we should change strategy?
Are her chances really lower if she does not go through a stem cell transplant?
And what if a CR is achieved with Revlimid and dex? Does this mean that all those ineligible SCT patients have a worse outcome?
A lot of questions arise based on your explanations. Have we chosen the wrong path?
Please advise.
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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 do think that Mark's comments are on target. In the conclusion part, however, I would sum it up slightly different in that for individual cases, it is impossible to tell whether or not the ASCT would have helped (in some cases, reported here on the forum, individuals go through the ordeal, and clearly get no benefit, that is difficult for sure). For the average case, yes, but you have no way of knowing whether or not you are the average.
I was not sure if your mother was a "frail" 65 or a healthy 65. You actually are still in induction, and could add that in, however, another strategy that also seems to be pretty good is ASCT at first relapse. Also, keep in mind that newer agents are available now, and potentially can be brought in at some point along the way (Kyprolis, Pomalyst, monoclonal antibodies). Clearly, very difficult decisions.
Good luck. JPC
I do think that Mark's comments are on target. In the conclusion part, however, I would sum it up slightly different in that for individual cases, it is impossible to tell whether or not the ASCT would have helped (in some cases, reported here on the forum, individuals go through the ordeal, and clearly get no benefit, that is difficult for sure). For the average case, yes, but you have no way of knowing whether or not you are the average.
I was not sure if your mother was a "frail" 65 or a healthy 65. You actually are still in induction, and could add that in, however, another strategy that also seems to be pretty good is ASCT at first relapse. Also, keep in mind that newer agents are available now, and potentially can be brought in at some point along the way (Kyprolis, Pomalyst, monoclonal antibodies). Clearly, very difficult decisions.
Good luck. JPC
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro,
There is no right or wrong way to treat myeloma. You indicated earlier that your mother does not want to do a transplant, so it is best to go with the wishes of the patient. My main point for posting was to really backup K_shash's post. That was a realistic post from the perspective of what a patient can expect from the current, standard therapies.
The topic of a potential therapy break was something you should have discussed with your doctor. I realize your mother is transplant eligible, but there was a key trial for transplant ineligible patients called the FIRST trial that looked at Revlimid / dexamethasone continuous, Revlimid /dexamethasone for 18 months, and the former standard of care (melphalan / prednisone / thalidomide). Here is a summary of the results of the study:
The median progression-free survival was 25.5 months with continuous lenalidomide-dexamethasone, 20.7 months with 18 cycles of lenalidomide-dexamethasone, and 21.2 months with MPT (hazard ratio for the risk of progression or death, 0.72 for continuous lenalidomide-dexamethasone vs. MPT and 0.70 for continuous lenalidomide-dexamethasone vs. 18 cycles of lenalidomide-dexamethasone; P<0.001 for both comparisons).
Reference: L Benboubke et al, "Lenalidomide and Dexamethasone in Transplant-Ineligible Patients with Myeloma", New England Journal of Medicine, September 2014 (full text of article - HTML; full text of article - PDF).
As you can see, Revlimid / dex for 18 months is not a therapy that can be expected to lead to a long-term drug free remission period.
Unfortunately, there is no such thing as a "free lunch" when it comes to myeloma therapy. I am currently enjoying a 4 and half year myeloma drug-free remission but spent 29 days in the hospital doing a full allo transplant in first complete response to get it. If Revlimid / dex for 18 months had a high probability of leading to a long-term, drug-free remission, we would all be doing it and aggressive therapies would be a thing of the past.
Mark
There is no right or wrong way to treat myeloma. You indicated earlier that your mother does not want to do a transplant, so it is best to go with the wishes of the patient. My main point for posting was to really backup K_shash's post. That was a realistic post from the perspective of what a patient can expect from the current, standard therapies.
The topic of a potential therapy break was something you should have discussed with your doctor. I realize your mother is transplant eligible, but there was a key trial for transplant ineligible patients called the FIRST trial that looked at Revlimid / dexamethasone continuous, Revlimid /dexamethasone for 18 months, and the former standard of care (melphalan / prednisone / thalidomide). Here is a summary of the results of the study:
The median progression-free survival was 25.5 months with continuous lenalidomide-dexamethasone, 20.7 months with 18 cycles of lenalidomide-dexamethasone, and 21.2 months with MPT (hazard ratio for the risk of progression or death, 0.72 for continuous lenalidomide-dexamethasone vs. MPT and 0.70 for continuous lenalidomide-dexamethasone vs. 18 cycles of lenalidomide-dexamethasone; P<0.001 for both comparisons).
Reference: L Benboubke et al, "Lenalidomide and Dexamethasone in Transplant-Ineligible Patients with Myeloma", New England Journal of Medicine, September 2014 (full text of article - HTML; full text of article - PDF).
As you can see, Revlimid / dex for 18 months is not a therapy that can be expected to lead to a long-term drug free remission period.
Unfortunately, there is no such thing as a "free lunch" when it comes to myeloma therapy. I am currently enjoying a 4 and half year myeloma drug-free remission but spent 29 days in the hospital doing a full allo transplant in first complete response to get it. If Revlimid / dex for 18 months had a high probability of leading to a long-term, drug-free remission, we would all be doing it and aggressive therapies would be a thing of the past.
Mark
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Mark11
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro,
There was a thread on Myeloma Beacon when someone had asked for "Encouraging Stories of Long Survival" to help boost the confidence for a myeloma patient. Particularly of interest is the story of Dan in Phoenix, who had his first multiple myeloma treatment in 1987, as I recall. Dan had harvested the stem cells in the late 80's. However, in recent years, he found out that the harvested stem cells were way past their "Shelf Life" (20 +/- years) and of no use. I am not sure Dan had a stem cell transplant in the recent years. Dan's post (Multibilly referred me to it) about the "air bubble technique" to avoid the Velcade rash helped me a lot. Such advice on the Myeloma Beacon has helped me tremendously – the air bubble technique, the soap to cure cramps, Benadryl for minor rash and Benadryl to help me sleep after the dex (just to name a few things that helped me tolerate the induction chemo).
We have a had a lot of discussion about the need for stem cell transplant (ASCT). I had a topic asking why even bother about harvesting stem cells at my age (67 at diagnosis). However, each case is different, and the ASCT or NO ASCT decision depends on the cytogenetics and how each individual responds to the chemo. Some just cannot tolerate the side effects of these toxic chemo drugs. I am fortunate that mine is the IgG kappa with no cytogenetics complications. The mSMART guidelines recommend chemo (induction and life-long maintenance) and harvesting the stem cells for a future ASCT. I had already decided against the harvesting and my oncologist advised me that my plan doesn't allow it. He was also confident that one can harvest the stem cells just before the ASCT, if and when one may be needed.
K_Shash
There was a thread on Myeloma Beacon when someone had asked for "Encouraging Stories of Long Survival" to help boost the confidence for a myeloma patient. Particularly of interest is the story of Dan in Phoenix, who had his first multiple myeloma treatment in 1987, as I recall. Dan had harvested the stem cells in the late 80's. However, in recent years, he found out that the harvested stem cells were way past their "Shelf Life" (20 +/- years) and of no use. I am not sure Dan had a stem cell transplant in the recent years. Dan's post (Multibilly referred me to it) about the "air bubble technique" to avoid the Velcade rash helped me a lot. Such advice on the Myeloma Beacon has helped me tremendously – the air bubble technique, the soap to cure cramps, Benadryl for minor rash and Benadryl to help me sleep after the dex (just to name a few things that helped me tolerate the induction chemo).
We have a had a lot of discussion about the need for stem cell transplant (ASCT). I had a topic asking why even bother about harvesting stem cells at my age (67 at diagnosis). However, each case is different, and the ASCT or NO ASCT decision depends on the cytogenetics and how each individual responds to the chemo. Some just cannot tolerate the side effects of these toxic chemo drugs. I am fortunate that mine is the IgG kappa with no cytogenetics complications. The mSMART guidelines recommend chemo (induction and life-long maintenance) and harvesting the stem cells for a future ASCT. I had already decided against the harvesting and my oncologist advised me that my plan doesn't allow it. He was also confident that one can harvest the stem cells just before the ASCT, if and when one may be needed.
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
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro,
Hope things are well with your mom.
You asked about why a ASCT if our response was so good with the induction therapy?
Good question to ask, and it's a very hard decision based on individual patient wishes. We realized that in almost all the data sets, there is a group at about 15 percent that respond to all stages of treatment better than average, both from a quality of life and a disease progression perspective.
Our plan was to start out easy with Revlimid and dexamethasone, then add Velcade until the M-spike stopped dropping, recover a bit, then ASCT, always maximizing her health at each stage.
We are waiting to be discharged today a few days ahead of schedule after her ASCT.
Best of luck!
Hope things are well with your mom.
You asked about why a ASCT if our response was so good with the induction therapy?
Good question to ask, and it's a very hard decision based on individual patient wishes. We realized that in almost all the data sets, there is a group at about 15 percent that respond to all stages of treatment better than average, both from a quality of life and a disease progression perspective.
Our plan was to start out easy with Revlimid and dexamethasone, then add Velcade until the M-spike stopped dropping, recover a bit, then ASCT, always maximizing her health at each stage.
We are waiting to be discharged today a few days ahead of schedule after her ASCT.
Best of luck!
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Is this a good response to Revlimid and dexamethasone?
I am running between three hematologists - one is my main hematologist, who is nine-hour drive away, second in my home town and third where I travel most of the time.\
Based on their comments, I understood I have two choices - go aggressive and participate in a stem cell transplant, second go slow and use non-aggressive chemo, watch the response and with positive response do not go for a transplant as several new medicines are coming up. All of them commended my life style, general health etc. and predicted I will have a positive response.
I selected to go slow and less aggressive response. I started with Revlimid + dexamethasone - 25 mg of Revlimid and 40 mg of dex per week plus Zometa every three months. Dex was reduced to 20 mg per week from second cycle and after ninth cycle to 16 mg. After eleven cycles, my all blood parameters are normal. M-spike is 0.36 g/dl, a significant drop from 3.9 g/dl.
I am not inclined to go for a transplant . I want to live an active, happy life until I live. In addition to chemo, I completely changed my diet, quit alcohol, which I had regularly with a glass or two of red wine, and sugar. I was not convinced about the transplant benefit in my case.
Based on their comments, I understood I have two choices - go aggressive and participate in a stem cell transplant, second go slow and use non-aggressive chemo, watch the response and with positive response do not go for a transplant as several new medicines are coming up. All of them commended my life style, general health etc. and predicted I will have a positive response.
I selected to go slow and less aggressive response. I started with Revlimid + dexamethasone - 25 mg of Revlimid and 40 mg of dex per week plus Zometa every three months. Dex was reduced to 20 mg per week from second cycle and after ninth cycle to 16 mg. After eleven cycles, my all blood parameters are normal. M-spike is 0.36 g/dl, a significant drop from 3.9 g/dl.
I am not inclined to go for a transplant . I want to live an active, happy life until I live. In addition to chemo, I completely changed my diet, quit alcohol, which I had regularly with a glass or two of red wine, and sugar. I was not convinced about the transplant benefit in my case.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Is this a good response to Revlimid and dexamethasone?
Hello everyone.
I am worried. Here is what has been happening lately.
A reminder: my mother's starting point prior to treatment was an M-spike of 47 g/L (4.7 g/dl)
She is on Revlimid and dexamethasone, 3 weeks on, 1 week off (25 mg + dex).
End of 4th cycle my mom's M-spike was down to 8.6 g/L (0.86 g/dL)
End of 5th cycle was 7.6 g/L (0.76 g/dL)
Things changed afterwards:
End of 6th cycle the M-spike was 8.2 g/L (0.82 g/dL)
End of 7th cycle up to 8.7 g/L (0.87 g/dL)
What is happening? Is she becoming refractory?
She is still within normal range on free light chain ratio and light chains, no symptoms except for very mild anemia which she has had all along (currently at 11 g instead of required 12 g).
I am worried. Here is what has been happening lately.
A reminder: my mother's starting point prior to treatment was an M-spike of 47 g/L (4.7 g/dl)
She is on Revlimid and dexamethasone, 3 weeks on, 1 week off (25 mg + dex).
End of 4th cycle my mom's M-spike was down to 8.6 g/L (0.86 g/dL)
End of 5th cycle was 7.6 g/L (0.76 g/dL)
Things changed afterwards:
End of 6th cycle the M-spike was 8.2 g/L (0.82 g/dL)
End of 7th cycle up to 8.7 g/L (0.87 g/dL)
What is happening? Is she becoming refractory?
She is still within normal range on free light chain ratio and light chains, no symptoms except for very mild anemia which she has had all along (currently at 11 g instead of required 12 g).
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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 hope you and your Mom are doing well. I am not 1,000% sure of the terminology, but it is something like the following. Your Mom has leveled off at a stage a little before it reached a very good partial response (VGPR). For treatments like Revlimid and dexamethasone, I am not the expert, but I do think that many doctors give it continuously. If there are no manifestations of the CRAB symptoms, then many doctors would consider the relapse at an M-spike 0.5 g/dL above the best reading. I think at that time it would be called refractory to the Revlimid-dex combo. There was an earlier posting by Mark that cited a study that for the average patient that could be something in the range of 20 months.
So I understand the worry, but I do think it is probably the time to talk to the doctor about the next step, whatever that is. I think that there are several options available to you in France, maybe a little less right now than in the U.S., but the monoclonal antibodies I think are under consideration for approval, and hopefully that will happen soon.
Some of the other posters have given some ideas of possible options. JohnBoy's ideas sound particularly close and relevant to your mother's situation. Good luck to you both.
I hope you and your Mom are doing well. I am not 1,000% sure of the terminology, but it is something like the following. Your Mom has leveled off at a stage a little before it reached a very good partial response (VGPR). For treatments like Revlimid and dexamethasone, I am not the expert, but I do think that many doctors give it continuously. If there are no manifestations of the CRAB symptoms, then many doctors would consider the relapse at an M-spike 0.5 g/dL above the best reading. I think at that time it would be called refractory to the Revlimid-dex combo. There was an earlier posting by Mark that cited a study that for the average patient that could be something in the range of 20 months.
So I understand the worry, but I do think it is probably the time to talk to the doctor about the next step, whatever that is. I think that there are several options available to you in France, maybe a little less right now than in the U.S., but the monoclonal antibodies I think are under consideration for approval, and hopefully that will happen soon.
Some of the other posters have given some ideas of possible options. JohnBoy's ideas sound particularly close and relevant to your mother's situation. Good luck to you both.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Bonjour Maro,
I can understand your concern about your mother's response to the Revlimid / dex leveling off. If all of the other blood tests and markers (such as light chains) are within normal ranges, then maybe she will just need more cycles to bring down the 'M' protein value.
When I relapsed at an 'M' value of approximately 11.1 g/L (1.11 g/dL) in September 2014 , it took only about 4 cycles to lower the 'M' value by 60%. Since then, after 21 cycles, it has lowered further to under a value of 1 g/L (0.1 g/dL). It took a lot of cycles to reach this value!
So I think it is possible that your mother's doctor will suggest she do more cycles of the same treatment, but please let us know what treatments she will be on. Bonne chance!
I can understand your concern about your mother's response to the Revlimid / dex leveling off. If all of the other blood tests and markers (such as light chains) are within normal ranges, then maybe she will just need more cycles to bring down the 'M' protein value.
When I relapsed at an 'M' value of approximately 11.1 g/L (1.11 g/dL) in September 2014 , it took only about 4 cycles to lower the 'M' value by 60%. Since then, after 21 cycles, it has lowered further to under a value of 1 g/L (0.1 g/dL). It took a lot of cycles to reach this value!
So I think it is possible that your mother's doctor will suggest she do more cycles of the same treatment, but please let us know what treatments she will be on. Bonne chance!
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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
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