Today's article on the Beacon ("Patterns Of Post-Transplant Relapse And Progression Vary Among Multiple Myeloma Patients") was very timely. EJ seems to be having an asymptomatic relapse. He had his stem cell transplant (SCT) in June, 2011, and although he did not achieve a complete response (CR), his M-spike held steady for about 26 months at 0.1 g/dL (1 g/L). Last September it started to climb, although very slowly. At his last appointment his m-spike was at 0.4 g/dL (4 g/L), with no other symptoms or problems.
I'm confused as to when treatment should start again. Should we wait until other symptoms appear, or just wait until his m-spike reaches a certain level? I'd like to take him to a multiple myeloma specialist prior to starting to treat again, but I am unsure when an optimal time to do that would be.
Has anyone been in a similar situation, or have thoughts to share?
Thanks.
Lyn
Forums
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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: Asymptomatic relapse after stem cell transplant?
Christa,
The questions you are asking should really be answered by someone with a license to practice medicine like an oncologist, preferably one who specializes in myeloma. There are a number of doctors who are advisers for the Beacon who may be able to give you some advice on this, but shouldn’t you be able to ask your current treatment physician these questions?
My recommendation is if you are concerned then go to the myeloma specialist now to get the answers to your questions.
The questions you are asking should really be answered by someone with a license to practice medicine like an oncologist, preferably one who specializes in myeloma. There are a number of doctors who are advisers for the Beacon who may be able to give you some advice on this, but shouldn’t you be able to ask your current treatment physician these questions?
My recommendation is if you are concerned then go to the myeloma specialist now to get the answers to your questions.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Asymptomatic relapse after stem cell transplant
Hello Lyn,
This is an important question that I am happy to answer. I am going to quote the International Myeloma Working Group (IMWG) from 2011 on this subject. I hope this is not too technical. It would be wise to see a specialist in advance of needing treatment though so that a new regimen could be considered and/or research trials discussed etc.
IMWG Definition of Clinical Relapse of Myeloma
Clinical relapse is defined using the definition of clinical relapse in the IMWG criteria. In the IMWG criteria, clinical relapse is defined as requiring one or more of the following direct indicators of increasing disease and/or end-organ dysfunction that are considered related to the underlying plasma cell proliferative disorder:
1. Development of new soft tissue plasmacytomas or bone lesions on skeletal survey, magnetic resonance imaging, or other imaging
2. Definite increase in the size of existing plasmacytomas or bone lesions. A definite increase is defined as a 50% (and at least 1 cm) increase as measured serially by the sum of the products of the cross-diameters of the measurable lesion
3. Hypercalcemia ( >11.5 mg/dL; > 2.875mM/L)
4. Decrease in hemoglobin of more than 2 g/dL (1.25mM) or to less than 10 g/dL
5. Rise in serum creatinine by more than or equal to 2 mg/dL (> 177mM/L)
6. Hyperviscosity
In patients who do not have clinical relapse, a significant paraprotein relapse is defined as doubling of the M-component in 2 consecutive measurements separated by less than or equal to 2 months; or an increase in the absolute levels of serum M protein by more than or equal to 1 g/dL, or urine M-protein by more than or equal to 500 mg/24 hours, or involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements separated by less than or equal to 2 months.
This definition of “paraprotein relapse” represents the rate of rise or absolute level of increase in M protein at which the panel considered that myeloma therapy should be restarted in relapsing patients in clinical practice, even if signs and symptoms of new end-organ damage are not yet apparent.
SV Rajkumar et al. "Consensus recommendations for the uniform reporting of clinical trials: report of the International Myeloma Workshop Consensus Panel 1," Blood. 2011;117(18):4691-4695 (full text of article)
*Durie BGM, Harousseau J-L, Miguel JS, et al. International uniform response criteria for multiple myeloma. Leukemia. 2006;20(9):1467-1473 (full text of article).
This is an important question that I am happy to answer. I am going to quote the International Myeloma Working Group (IMWG) from 2011 on this subject. I hope this is not too technical. It would be wise to see a specialist in advance of needing treatment though so that a new regimen could be considered and/or research trials discussed etc.
IMWG Definition of Clinical Relapse of Myeloma
Clinical relapse is defined using the definition of clinical relapse in the IMWG criteria. In the IMWG criteria, clinical relapse is defined as requiring one or more of the following direct indicators of increasing disease and/or end-organ dysfunction that are considered related to the underlying plasma cell proliferative disorder:
1. Development of new soft tissue plasmacytomas or bone lesions on skeletal survey, magnetic resonance imaging, or other imaging
2. Definite increase in the size of existing plasmacytomas or bone lesions. A definite increase is defined as a 50% (and at least 1 cm) increase as measured serially by the sum of the products of the cross-diameters of the measurable lesion
3. Hypercalcemia ( >11.5 mg/dL; > 2.875mM/L)
4. Decrease in hemoglobin of more than 2 g/dL (1.25mM) or to less than 10 g/dL
5. Rise in serum creatinine by more than or equal to 2 mg/dL (> 177mM/L)
6. Hyperviscosity
In patients who do not have clinical relapse, a significant paraprotein relapse is defined as doubling of the M-component in 2 consecutive measurements separated by less than or equal to 2 months; or an increase in the absolute levels of serum M protein by more than or equal to 1 g/dL, or urine M-protein by more than or equal to 500 mg/24 hours, or involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements separated by less than or equal to 2 months.
This definition of “paraprotein relapse” represents the rate of rise or absolute level of increase in M protein at which the panel considered that myeloma therapy should be restarted in relapsing patients in clinical practice, even if signs and symptoms of new end-organ damage are not yet apparent.
SV Rajkumar et al. "Consensus recommendations for the uniform reporting of clinical trials: report of the International Myeloma Workshop Consensus Panel 1," Blood. 2011;117(18):4691-4695 (full text of article)
*Durie BGM, Harousseau J-L, Miguel JS, et al. International uniform response criteria for multiple myeloma. Leukemia. 2006;20(9):1467-1473 (full text of article).
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Asymptomatic relapse after stem cell transplant
Dr. Libby, you. answered my question before I even asked it!
Thanks so much for your help!
David
Thanks so much for your help!
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Asymptomatic relapse after stem cell transplant
Dr. Libby,
Thank you very much for your reply! EJ doesn't seem to be meeting the strictest sense of the definition, in that his multiple myeloma has not doubled twice in two successive follow-ups. But now I understand better why they haven't started treatment, and what they are looking for.
Thanks for your questions, too, Eric. Yes of course, we do talk to his oncologist, but I like to do my research ahead of time so I know what to ask, and have a foundation to understand the response. As I mentioned, I would like EJ to go back to the specialist who we originally saw for a second opinion, but I want to do it at a time when we sort of understand what his relapse is looking like. Seems like now is the right time to go!
Best to all,
Lyn
Thank you very much for your reply! EJ doesn't seem to be meeting the strictest sense of the definition, in that his multiple myeloma has not doubled twice in two successive follow-ups. But now I understand better why they haven't started treatment, and what they are looking for.
Thanks for your questions, too, Eric. Yes of course, we do talk to his oncologist, but I like to do my research ahead of time so I know what to ask, and have a foundation to understand the response. As I mentioned, I would like EJ to go back to the specialist who we originally saw for a second opinion, but I want to do it at a time when we sort of understand what his relapse is looking like. Seems like now is the right time to go!
Best to all,
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: Asymptomatic relapse after stem cell transplant
Thanks Dr. Libby, for itemizing the guidelines in regards to asymptomatic relapse. This is the sort of conversation that my husband and I have with our oncologist, Dr. Walter Blahey, also. I will print out the information and keep it with me for my next app't. This has helped me to better understand the rationale behind when to re-initiate treatment, if necessary.
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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: Asymptomatic relapse after stem cell transplant
Lyn,
I hope all is going well for you. I too am a firm believer in doing homework before meeting with doctors so that we can have a more meaningful discussion. I have found that often the there is a lot to discuss and go over, but my doctors do not have the time to clear the schedule the rest of the day to have a myeloma 101 class during my appointments. So I try to come prepared.
I have found the Beacon to be a great resource for doing that homework. I get a little apprehensive, however, when I see questions about someone’s specific case that really should be addressed directly by a medical professional and not just someone else who also has myeloma.
I am glad to see Dr. Libby was able to do answer your questions. The Beacon medical advisers are an excellent asset to have and I am very thankful to have them available.
I hope all is going well for you. I too am a firm believer in doing homework before meeting with doctors so that we can have a more meaningful discussion. I have found that often the there is a lot to discuss and go over, but my doctors do not have the time to clear the schedule the rest of the day to have a myeloma 101 class during my appointments. So I try to come prepared.
I have found the Beacon to be a great resource for doing that homework. I get a little apprehensive, however, when I see questions about someone’s specific case that really should be addressed directly by a medical professional and not just someone else who also has myeloma.
I am glad to see Dr. Libby was able to do answer your questions. The Beacon medical advisers are an excellent asset to have and I am very thankful to have them available.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Asymptomatic relapse after stem cell transplant
It took me a while to find this post. I can't believe it's been almost two years! EJ's M-spike has risen to 0.6 g/dL (6 g/L), and he is showing increased activity in his bone lesions. We've been to both the local oncologist, and to Dana-Farber. Both agree that he needs to start treatment now. The local oncologist is recommending Velcade / Revlimid / dex, with no maintenance. Dana-Farber is recommending Ninlaro / Revlimid / dex with Revlimid for maintenance.
I think the Ninlaro would give him a little more freedom, and I believe the neuropathy profile is better, but it may come down to what the insurance company will pay! The big question is the Revlimid maintenance. We've agreed to table that discussion until he sees how he does with the Revlimid.
As scary as it is to start treatment again after 4-1/2 years, the doctor's were very optimistic that he would do well with this treatment.
If anyone has any experience with Ninlaro, I'd appreciate your insight!
Lyn
I think the Ninlaro would give him a little more freedom, and I believe the neuropathy profile is better, but it may come down to what the insurance company will pay! The big question is the Revlimid maintenance. We've agreed to table that discussion until he sees how he does with the Revlimid.
As scary as it is to start treatment again after 4-1/2 years, the doctor's were very optimistic that he would do well with this treatment.
If anyone has any experience with Ninlaro, I'd appreciate your insight!
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: Asymptomatic relapse after stem cell transplant
Hi Lyn,
It sounds like your husband came out of remission VERY slowly, which is a good thing, I suspect.
What has EJ been treated with in the past, and how did he respond to it? I think that will influence what sort of treatment to pursue next.
This link will take you to a list of forum discussions related to Ninlaro:
https://myelomabeacon.org/forum/search.php?keywords=ninlaro+ixazomib+mln9708&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
I think you may find some of them helpful.
Some of the news articles at the Beacon's Ninlaro tag page also may be helpful:
https://myelomabeacon.org/tag/ninlaro/
Good luck!
It sounds like your husband came out of remission VERY slowly, which is a good thing, I suspect.
What has EJ been treated with in the past, and how did he respond to it? I think that will influence what sort of treatment to pursue next.
This link will take you to a list of forum discussions related to Ninlaro:
https://myelomabeacon.org/forum/search.php?keywords=ninlaro+ixazomib+mln9708&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
I think you may find some of them helpful.
Some of the news articles at the Beacon's Ninlaro tag page also may be helpful:
https://myelomabeacon.org/tag/ninlaro/
Good luck!
Re: Asymptomatic relapse after stem cell transplant
Lyn,
I am in my first month of taking ixazomib (Ninlaro apparently – brand names just annoy me for some reason).
Anyway I've posted in the thread under treatments and side effects called "Experience with Ninlaro?".
I'd love to know how it all goes for you.
Judy
I am in my first month of taking ixazomib (Ninlaro apparently – brand names just annoy me for some reason).
Anyway I've posted in the thread under treatments and side effects called "Experience with Ninlaro?".
I'd love to know how it all goes for you.
Judy
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heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
16 posts
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