Hello Wife101,
it is so heartening to see people experiencing such good outcomes to the newer treatments and it is obvious that the fellow sufferers support the idea for repeating the same treatment. I would certainly say that if you are offered a Revlimid, dex and Velcade type regimen, take full advantage of it. I had hoped to receive this for my recent relapse, but it was refused in favour of pomalidomide (Pomalyst), dex and cyclophosphamide. I will write up a full update on my progress later in the month following the next electrophoresis test, which is next week. I would like to share just one or two matters.
So far the treatment has produced very good results with a fifty percent M-spike reduction in just three weeks of treatment. I have recently experienced unpleasant side effects with the cyclophosphamide – partial muscle paralysis in the legs, making walking difficult. Also, a lung infection requiring an oxygen machine to be delivered to our home. I never experienced such things with the original Revlimid, Velcade, and dexamethasone. I had been able to continue a normal lifestyle. Impossible now with this other treatment, although I am sure the effects would diminish over a week or two if treatment was to stop.
As for the Pomalyst 4 mg which I am taking 21 days out of the month, it is of course similar to Revlimid, one of the main differences being that Revlimid would normally be taken in a daily dose of perhaps 20 mg as compared to Pomalyst, which is used in a daily dose of only 4 mg or less, thus reducing side effects whilst still being effective in controlling the disease. I have experienced no problems with it.
Best wishes for an excellent continuation of your husbands treatment. From Victor L
Forums
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Repeat initial therapy after 7 years in remission?
Hi Wife 101,
I hope that you are seeing a myeloma specialist, who has knowledge of all of the new drug therapies. If you were to take a combination of drugs, such as Lyn has suggested, you might get a quicker response in driving back the myeloma than with just Revlimid plus dex. Personally, I have been taking Revlimid plus dex for the last two years, and it has worked in putting my myeloma into remission again. After my stem cell transplant in 2010, I took a low dose of Revlimid for a year, and after that was not taking any treatments for 3 1/2 years. If I were to relapse again, I would have other options, including Velcade, which was my initial therapy, and to which I did not become resistant.
It is quite confusing, and that is why I think you should probably get a second medical opinion. Hope that helps!
I hope that you are seeing a myeloma specialist, who has knowledge of all of the new drug therapies. If you were to take a combination of drugs, such as Lyn has suggested, you might get a quicker response in driving back the myeloma than with just Revlimid plus dex. Personally, I have been taking Revlimid plus dex for the last two years, and it has worked in putting my myeloma into remission again. After my stem cell transplant in 2010, I took a low dose of Revlimid for a year, and after that was not taking any treatments for 3 1/2 years. If I were to relapse again, I would have other options, including Velcade, which was my initial therapy, and to which I did not become resistant.
It is quite confusing, and that is why I think you should probably get a second medical opinion. Hope that helps!
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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: Repeat initial therapy after 7 years in remission?
Hi Wife101,
You've raised a great question, one that is or will be at some point relevant for almost all of us.
All of the folks replying so far back up their choices with good points, so this thread has been good reading for me.
I'm still in my first remission, and when the time comes for new treatment (beyond the maintenance I'm on now), I don't know what I'll do.
"Dance with who brung ya" does make sense in a lot of ways for your husband since he's had such a successful go of it so far.
But on the other hand, I might be tempted to try the latest treatment available, rather than hold it in reserve as others have suggested. Smash the myeloma as hard as possible with the newest stuff available each time you can, and figure that when you relapse the next time, there will be something even newer and better from the pipeline to try. This philosophy seems to be at the heart of the mSMART Guidelines' statement, "The general approach is presented below. However, clinical trials must be considered and are preferred at every level."
It's not an easy decision.
Best wishes to your husband and you. Please keep us posted on what you decide and on how things go.
Mike
You've raised a great question, one that is or will be at some point relevant for almost all of us.
All of the folks replying so far back up their choices with good points, so this thread has been good reading for me.
I'm still in my first remission, and when the time comes for new treatment (beyond the maintenance I'm on now), I don't know what I'll do.
"Dance with who brung ya" does make sense in a lot of ways for your husband since he's had such a successful go of it so far.
But on the other hand, I might be tempted to try the latest treatment available, rather than hold it in reserve as others have suggested. Smash the myeloma as hard as possible with the newest stuff available each time you can, and figure that when you relapse the next time, there will be something even newer and better from the pipeline to try. This philosophy seems to be at the heart of the mSMART Guidelines' statement, "The general approach is presented below. However, clinical trials must be considered and are preferred at every level."
It's not an easy decision.
Best wishes to your husband and you. Please keep us posted on what you decide and on how things go.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Repeat initial therapy after 7 years in remission?
Andrew, thanks so much for posting the revised mSMART guidelines. I had not seen them. Nice to see that with all of the drugs that were approved last year, there are so many options – even after a second relapse!
EJ and I went to Dana-Farber to get their input on what his options were for his first relapse. We discussed a second stem cell transplant, but they were very much against it, saying that the chance of it being successful were much lower than with an initial stem cell transplant, even if you had a long remission.
Lyn
EJ and I went to Dana-Farber to get their input on what his options were for his first relapse. We discussed a second stem cell transplant, but they were very much against it, saying that the chance of it being successful were much lower than with an initial stem cell transplant, even if you had a long remission.
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
Re: Repeat initial therapy after 7 years in remission?
Interesting discussion. I am very surprised anyone is questioning this patient's doctor given that this doctor has put this patient in an excellent position to be a long-term survivor. This patient got to enjoy the best quality of life a myeloma patient gets to experience – the first treatment-free interval – for seven years, and the patient is not refractory to proteasome inhibitors or immunomodulatory agents (imids).
The reality is that patients who are relapsed and refractory to proteasome inhibitors and imids still have a poor outcome. This study was published in August of this year, so it is not old and it is a U.S.-based study.
"This real-world retrospective study of electronic health records examines the survival outcomes of patients with multiple myeloma who are heavily pretreated or highly refractory to currently approved treatments, including recently approved proteasome inhibitors and immunomodulatory drugs. This survival analysis showed that outcomes for these patients remain poor despite the availability of newer agents, with median overall survival of approximately 8 months. These findings highlight a critical need to develop novel therapies for these patients and also serve as a reference point against which emerging agents for heavily pretreated or highly refractory disease may be evaluated."
Source: Usmani, S., et al, "Analysis of Real-World Data on Overall Survival in Multiple Myeloma Patients With ≥3 Prior Lines of Therapy Including a Proteasome Inhibitor (PI) and an Immunomodulatory Drug (IMiD), or Double Refractory to a PI and an IMiD," The Oncologist, August, 2016 (abstract)
This doctor has done an excellent job of not putting this patient in this position. I would be inclined to want to get an opinion from a doctor who treats like this. This doctor understands that the fastest way to make myeloma a "sprint" is to get their patient relapsed / refractory to imids and proteasome inhibitors early on.
The reality is that patients who are relapsed and refractory to proteasome inhibitors and imids still have a poor outcome. This study was published in August of this year, so it is not old and it is a U.S.-based study.
"This real-world retrospective study of electronic health records examines the survival outcomes of patients with multiple myeloma who are heavily pretreated or highly refractory to currently approved treatments, including recently approved proteasome inhibitors and immunomodulatory drugs. This survival analysis showed that outcomes for these patients remain poor despite the availability of newer agents, with median overall survival of approximately 8 months. These findings highlight a critical need to develop novel therapies for these patients and also serve as a reference point against which emerging agents for heavily pretreated or highly refractory disease may be evaluated."
Source: Usmani, S., et al, "Analysis of Real-World Data on Overall Survival in Multiple Myeloma Patients With ≥3 Prior Lines of Therapy Including a Proteasome Inhibitor (PI) and an Immunomodulatory Drug (IMiD), or Double Refractory to a PI and an IMiD," The Oncologist, August, 2016 (abstract)
This doctor has done an excellent job of not putting this patient in this position. I would be inclined to want to get an opinion from a doctor who treats like this. This doctor understands that the fastest way to make myeloma a "sprint" is to get their patient relapsed / refractory to imids and proteasome inhibitors early on.
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Mark11
Re: Repeat initial therapy after 7 years in remission?
Hi Mark11,
Not to be disagreeable, but I think that the initial poster asked for some thoughts, and replying posters are discussing the options, and in some cases their opinions. I did not get the impression that anyone was actually questioning the doctor.
Good luck to you.
Not to be disagreeable, but I think that the initial poster asked for some thoughts, and replying posters are discussing the options, and in some cases their opinions. I did not get the impression that anyone was actually questioning the doctor.
Good luck to you.
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JPC - Name: JPC
Re: Repeat initial therapy after 7 years in remission?
Lyn,
I am interested in your comment about the advice that a second transplant is unlikely to be successful, especially since the mSmart guidelines, which I linked above, call for consideration of a second ASCT under certain circumstances. Did the doc at Dana-Farber reference a study to support their position?
I am interested in your comment about the advice that a second transplant is unlikely to be successful, especially since the mSmart guidelines, which I linked above, call for consideration of a second ASCT under certain circumstances. Did the doc at Dana-Farber reference a study to support their position?
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Repeat initial therapy after 7 years in remission?
Thank you all so much for your feedback. Ultimately, with our doctor's full recommendation, we are going to repeat Revlimid plus dex, followed by stem cell transplant. We are still deciding whether to add Kyprolis, or save it for next time. Our oncologist doesn't feel the third drug is necessary at this time and was very reassuring that following the same course could give us the same depth of response. Her decision was based on several current studies as well as our positive outcome last time.
Re: Repeat initial therapy after 7 years in remission?
Hi Goldmine,
I think you would have a problem finding a study that does not support the use of a 2nd auto if the first remission lasted 36 months or longer (especially if it was a drug free remission) from a treatment efficiency standpoint. Here is a paper written about treating relapsed patients that did an auto. Note two of the authors practice at Dana Farber.
"A number of reports have documented the feasibility of performing salvage ASCTs. As shown in Table 2, overall response rates are generally high and transplant-related mortality rates low. On average, the progression-free survival (PFS) benefit from a salvage transplant is approximately half that of the PFS from the first transplant. There does not appear to be a clear signal that the type of high-dose therapy given with the salvage ASCT has a significant impact on outcome (Table 1), and in the absence of prospective trial data, many centers continue to use single-agent high-dose melphalan, although other strategies such as the integration of bortezomib administered with melphalan in this setting has been evaluated.
Multiple studies have demonstrated that those patients who relapse early after the first ASCT derive less benefit from salvage ASCT and have worse outcomes. A cut-off time after relapse from first ASCT for considering patients for salvage ASCT is a matter of debate. Jimenez-Zepeda et al. differentiated between patients that relapsed before or after 24 months from their first ASCT. In that setting the median PFS was 9.83 versus 17.3 months and the median overall survival (OS) 28.5 versus 71.3 months, respectively. Fenk et al. revealed that salvage ASCT was most effective for those patients with an initial remission time between 25 and 36 months. Chow et al. reported that with using cut-offs of under 18 months, 18 to 36 months, and more than 36 months, the median PFS after salvage ASCT was 4.2, 13.8, and 49.1 months (P < .0001) respectively, with median OS of 10.7, 30.9, and 86.1 months (P < .0001), respectively. A report analyzing 187 patients who underwent salvage ASCT in a Center for International Blood and Marrow Transplant Research trial demonstrated that those patients who relapsed 36 months or more after the first transplant derived greater benefit from the second transplant (longer PFS and OS) than those who relapsed early, which provides an important benchmark."
Source: Holstein, S.A., et al., "Management of Relapsed Multiple Myeloma after Autologous Stem Cell Transplant," Biology of Blood and Marrow Transplantation, May 2015 (full text of article)
Having said that, Wife101 seems to be more willing to deal with the long term toxicity of continuous therapy with novel agents as opposed to the short term toxicity of the transplant. Here is a link to a Mayo study discussing this.
The results of our study and other similar single institution studies are described in Table 5; however, the debate on the role of an auto-SCT2 vs novel agents as salvage therapy in relapsed disease continues. Even though it is neither appropriate nor effective in comparing results from different studies, the overall response rates of auto-SCT2 in our study were 86% which is comparable to those reported with salvage therapy regimens containing novel agents. Hence, with comparable efficacy between novel agents and auto-SCT2, it is crucial to offer therapies that strike a balance between intensity and duration of therapy with the goal of reducing toxicity. Auto-SCT2 has an initial risk of significant toxicity but it may also provide the potential of having a prolonged time of treatment in appropriately selected patients. On the other hand, novel agents such as thalidomide, lenalidomide or bortezomib are associated with a higher risk of grade III or IV toxicities such as neuropathy, myelosuppression and thrombosis. Hence, providers and patients may prefer the transient toxicity associated with auto-SCT2 in place of the continuous toxicities of novel agents. There is no evidence that the efficacy of future novel agent salvage therapies may be compromised by the prior sequence of salvage transplantation therapy. Moreover, with the increasing cost of novel agent-based regimens in terms of drugs and prophylaxis costs; considering an auto-SCT2 as a salvage regimen could be cost effective and safe while at the same time capable of providing durable benefit in appropriately selected patients such as those who have had a prolonged TTP after their auto-SCT1."
Source: Gonsalves, W.I., et al, "Second auto-SCT for treatment of relapsed multiple myeloma," Bone Marrow Transplantation, September 2012 (full text of article)
You need to consider both toxicity, short- and long-term quality of life, and treatment efficiency when making a decision.
Mark
I think you would have a problem finding a study that does not support the use of a 2nd auto if the first remission lasted 36 months or longer (especially if it was a drug free remission) from a treatment efficiency standpoint. Here is a paper written about treating relapsed patients that did an auto. Note two of the authors practice at Dana Farber.
"A number of reports have documented the feasibility of performing salvage ASCTs. As shown in Table 2, overall response rates are generally high and transplant-related mortality rates low. On average, the progression-free survival (PFS) benefit from a salvage transplant is approximately half that of the PFS from the first transplant. There does not appear to be a clear signal that the type of high-dose therapy given with the salvage ASCT has a significant impact on outcome (Table 1), and in the absence of prospective trial data, many centers continue to use single-agent high-dose melphalan, although other strategies such as the integration of bortezomib administered with melphalan in this setting has been evaluated.
Multiple studies have demonstrated that those patients who relapse early after the first ASCT derive less benefit from salvage ASCT and have worse outcomes. A cut-off time after relapse from first ASCT for considering patients for salvage ASCT is a matter of debate. Jimenez-Zepeda et al. differentiated between patients that relapsed before or after 24 months from their first ASCT. In that setting the median PFS was 9.83 versus 17.3 months and the median overall survival (OS) 28.5 versus 71.3 months, respectively. Fenk et al. revealed that salvage ASCT was most effective for those patients with an initial remission time between 25 and 36 months. Chow et al. reported that with using cut-offs of under 18 months, 18 to 36 months, and more than 36 months, the median PFS after salvage ASCT was 4.2, 13.8, and 49.1 months (P < .0001) respectively, with median OS of 10.7, 30.9, and 86.1 months (P < .0001), respectively. A report analyzing 187 patients who underwent salvage ASCT in a Center for International Blood and Marrow Transplant Research trial demonstrated that those patients who relapsed 36 months or more after the first transplant derived greater benefit from the second transplant (longer PFS and OS) than those who relapsed early, which provides an important benchmark."
Source: Holstein, S.A., et al., "Management of Relapsed Multiple Myeloma after Autologous Stem Cell Transplant," Biology of Blood and Marrow Transplantation, May 2015 (full text of article)
Having said that, Wife101 seems to be more willing to deal with the long term toxicity of continuous therapy with novel agents as opposed to the short term toxicity of the transplant. Here is a link to a Mayo study discussing this.
The results of our study and other similar single institution studies are described in Table 5; however, the debate on the role of an auto-SCT2 vs novel agents as salvage therapy in relapsed disease continues. Even though it is neither appropriate nor effective in comparing results from different studies, the overall response rates of auto-SCT2 in our study were 86% which is comparable to those reported with salvage therapy regimens containing novel agents. Hence, with comparable efficacy between novel agents and auto-SCT2, it is crucial to offer therapies that strike a balance between intensity and duration of therapy with the goal of reducing toxicity. Auto-SCT2 has an initial risk of significant toxicity but it may also provide the potential of having a prolonged time of treatment in appropriately selected patients. On the other hand, novel agents such as thalidomide, lenalidomide or bortezomib are associated with a higher risk of grade III or IV toxicities such as neuropathy, myelosuppression and thrombosis. Hence, providers and patients may prefer the transient toxicity associated with auto-SCT2 in place of the continuous toxicities of novel agents. There is no evidence that the efficacy of future novel agent salvage therapies may be compromised by the prior sequence of salvage transplantation therapy. Moreover, with the increasing cost of novel agent-based regimens in terms of drugs and prophylaxis costs; considering an auto-SCT2 as a salvage regimen could be cost effective and safe while at the same time capable of providing durable benefit in appropriately selected patients such as those who have had a prolonged TTP after their auto-SCT1."
Source: Gonsalves, W.I., et al, "Second auto-SCT for treatment of relapsed multiple myeloma," Bone Marrow Transplantation, September 2012 (full text of article)
You need to consider both toxicity, short- and long-term quality of life, and treatment efficiency when making a decision.
Mark
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Mark11
Re: Repeat initial therapy after 7 years in remission?
Andrew, unfortunately EJs doctor did not reference a study. He told us about a recent patient who had a second stem cell transplant after a long remission from his first stem cell transplant and it did not work. Interestingly, EJ’s doc is one of the authors of the article Mark11 quoted.
Mark 11, not to be argumentative, but I think you are overstating it a bit when you say that you would have a problem finding a study that does not support the use of a second auto if the first remission lasted 36 months or longer. If you read down a bit further in the article in Biology of Blood and Marrow Transplantation, it also says that “in general, retrospective data have suggested a possible trend toward improved survival with salvage transplant but not one that was significantly different and was in fact best seen in those patients with a larger progression-free interval from first transplant.”
EJ relapsed after 54 months. According to the article, with a second transplant could be expected to result in a progression-free survival of half that, or 27 months. The median progression-free survival for Ninlaro (ixazomib), Revlimid, and dexamethasone is 21 months. I’m not sure that the toxicity of the second stem cell transplant is worth it, especially if there is ongoing maintenance regardless of which treatment you select.
Lyn
Mark 11, not to be argumentative, but I think you are overstating it a bit when you say that you would have a problem finding a study that does not support the use of a second auto if the first remission lasted 36 months or longer. If you read down a bit further in the article in Biology of Blood and Marrow Transplantation, it also says that “in general, retrospective data have suggested a possible trend toward improved survival with salvage transplant but not one that was significantly different and was in fact best seen in those patients with a larger progression-free interval from first transplant.”
EJ relapsed after 54 months. According to the article, with a second transplant could be expected to result in a progression-free survival of half that, or 27 months. The median progression-free survival for Ninlaro (ixazomib), Revlimid, and dexamethasone is 21 months. I’m not sure that the toxicity of the second stem cell transplant is worth it, especially if there is ongoing maintenance regardless of which treatment you select.
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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