@Jimny: thank you for your detailed response and for the articles you shared. They are very useful to me and give a better view.
One main contradiction that I don't grasp is why this study below does not concur with that of the mSmart. Have a look:
https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/
This study is controversial with the mSMART risk classification.
It even discards t(14;16) and barely mentions it whereas in mSMART it is classified as high risk. Doesn't make sense...
@Little Monkey: I understand your concern for your father.. It is truely hard to cope with seeing our loved ones having to go through all of this....
I know very little about CyBorD... But I have read that it is promising and gives good results.
My mother does have a hematologist following her but unfortunately I doubt that he is a myeloma specialist. He does seem to know his way around though.
Best of luck to you little Monkey and I wish for your father that the chosen treatment works well.
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: Starting treatment with trial Rd + Daratumumab
Hi Maro,
I don't want to confuse your decision making any further, but I did want to mention that the IMWG also has a new staging system that was described in a recent publication. It is mentioned and summarised in this recent forum thread:
https://myelomabeacon.org/forum/revised-staging-system-multiple-myeloma-t5829.html
The new staging system does consider t(14;16) a high risk chromosomal abnormality, although I think JimNY's point about there being some uncertainty on that classification is well taken.
I think the disagreement between different risk classification systems published by the IMWG and various treatment centres is just a reflection of the fact that our knowledge of myeloma and how it responds to treatment is in a state of flux. Also, what is today "high risk" disease may no longer be high risk in the future as new treatments become available that are able to address myeloma that, with today's treatments, is more difficult to treat.
Cheers!
I don't want to confuse your decision making any further, but I did want to mention that the IMWG also has a new staging system that was described in a recent publication. It is mentioned and summarised in this recent forum thread:
https://myelomabeacon.org/forum/revised-staging-system-multiple-myeloma-t5829.html
The new staging system does consider t(14;16) a high risk chromosomal abnormality, although I think JimNY's point about there being some uncertainty on that classification is well taken.
I think the disagreement between different risk classification systems published by the IMWG and various treatment centres is just a reflection of the fact that our knowledge of myeloma and how it responds to treatment is in a state of flux. Also, what is today "high risk" disease may no longer be high risk in the future as new treatments become available that are able to address myeloma that, with today's treatments, is more difficult to treat.
Cheers!
Re: Starting treatment with trial Rd + Daratumumab
Hello Maro:
I wanted to add a little bit to your question and to the discussion, though its the opinion of a non-medical professional who has done a little bit of research.
Short answer. I agree with your original reasoning, except for the comment below.
Data so far is that getting Dara should be looked at as an opportunity at this stage. I would not be worried about the risk status, and I think dwelling on that might only confuse you. The exact status of Dara in high risk has not yet been established, some researches feel it might be very good in terms of mitigating several of the high risk cytogenetic markers, but they are not sure yet. Dara's benefit seems to be across the board, so you would get benefit regardless of high risk status, so that does not matter. Second, the early indication Is that if you add Dara to a two drug combo, that there is no additional side effects (on average). So you can expect to get the results without having to pay for it in terms of added toxicities, which is very good.
So the Dara arm would be a win in my view if you are randomized into it.
The issue for your decision, in my view is the other arm. If you are in the Rd arm, will it work well enough? I understand that you do not like Velcade at this point, but your opinion might change if the response is mediocre to Rd. Probably you well get a decent response with Rd (if that is your arm), but its only a two drug regimen, and you have a higher chance or obtaining less than VGPR If you get VGPR, of Rd, that would be pretty good. Being on trial, your treating doctor would have to take you off trial in order to add Velcade, if needed, but may be reluctant to do so quickly, because he/she is probably committed to the trial participation If your mother has early relapse (God forbid), I am sure that you would be taken off trial quickly to deal with it. The mediocre response, however, in my view could cause a complication.
If you can convince yourselves that the Rd arm is also acceptable, then the trial is a win/win. As stated, you need to be hopeful/watchful for the needed response, if on the Rd arm.
Good luck.
I wanted to add a little bit to your question and to the discussion, though its the opinion of a non-medical professional who has done a little bit of research.
Short answer. I agree with your original reasoning, except for the comment below.
Data so far is that getting Dara should be looked at as an opportunity at this stage. I would not be worried about the risk status, and I think dwelling on that might only confuse you. The exact status of Dara in high risk has not yet been established, some researches feel it might be very good in terms of mitigating several of the high risk cytogenetic markers, but they are not sure yet. Dara's benefit seems to be across the board, so you would get benefit regardless of high risk status, so that does not matter. Second, the early indication Is that if you add Dara to a two drug combo, that there is no additional side effects (on average). So you can expect to get the results without having to pay for it in terms of added toxicities, which is very good.
So the Dara arm would be a win in my view if you are randomized into it.
The issue for your decision, in my view is the other arm. If you are in the Rd arm, will it work well enough? I understand that you do not like Velcade at this point, but your opinion might change if the response is mediocre to Rd. Probably you well get a decent response with Rd (if that is your arm), but its only a two drug regimen, and you have a higher chance or obtaining less than VGPR If you get VGPR, of Rd, that would be pretty good. Being on trial, your treating doctor would have to take you off trial in order to add Velcade, if needed, but may be reluctant to do so quickly, because he/she is probably committed to the trial participation If your mother has early relapse (God forbid), I am sure that you would be taken off trial quickly to deal with it. The mediocre response, however, in my view could cause a complication.
If you can convince yourselves that the Rd arm is also acceptable, then the trial is a win/win. As stated, you need to be hopeful/watchful for the needed response, if on the Rd arm.
Good luck.
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JPC - Name: JPC
Re: Starting treatment with trial Rd + Daratumumab
Thanks for the good wishes Maro,
What part of France are you in?
What part of France are you in?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Starting treatment with trial Rd + Daratumumab
@JPC: You make an excellent point.
This is exactly my concern. I am aware that Rd alone may not be enough. I beleive that the treatment in this trial will only be beneficial if we fall in the Dara arm.
The problem is that my options are very limited, they are as follows:
1) VTD induction followed by ASCT.
2) MPV for the elderly if we choose not to SCT.
3) The Rd + Dara Trial.
The problem is as follows, and I need your opinion on my reasoning:
1) We do not want to do the ASCT before giving treatment a chance. Sometimes it may be enough and can postpone the harshness of ASCT for later / last resort use.
2) If we choose MPV, this may break our chances to do ASCT at a later stage because Melphalan is a stem cell damaging agent. So choosing this treatment may compromise future ability to make ASCT, am I right?
3) This leaves us with the Rd+Dara trial... If we get the Dara then it's a "hopefully" winning treatment. However, if we don't then I am not keen about Rd on its own...
This leaves me in a massive dilema.. what on earth should I do? What would you do if I may ask?
I am totally lost and I am so affraid of making my mother take a wrong path which will weigh on my consciousness forever...
@ Little Monkey : I am in Lyon
This is exactly my concern. I am aware that Rd alone may not be enough. I beleive that the treatment in this trial will only be beneficial if we fall in the Dara arm.
The problem is that my options are very limited, they are as follows:
1) VTD induction followed by ASCT.
2) MPV for the elderly if we choose not to SCT.
3) The Rd + Dara Trial.
The problem is as follows, and I need your opinion on my reasoning:
1) We do not want to do the ASCT before giving treatment a chance. Sometimes it may be enough and can postpone the harshness of ASCT for later / last resort use.
2) If we choose MPV, this may break our chances to do ASCT at a later stage because Melphalan is a stem cell damaging agent. So choosing this treatment may compromise future ability to make ASCT, am I right?
3) This leaves us with the Rd+Dara trial... If we get the Dara then it's a "hopefully" winning treatment. However, if we don't then I am not keen about Rd on its own...
This leaves me in a massive dilema.. what on earth should I do? What would you do if I may ask?
I am totally lost and I am so affraid of making my mother take a wrong path which will weigh on my consciousness forever...
@ Little Monkey : I am in Lyon
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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: Starting treatment with trial Rd + Daratumumab
Bonjour Maro, C'est moi encore! I know that you were also wondering about doing a stem cell transplant pour ton mere. If you don't mind me asking, what has deterred you from trying that? I know that all of these choices must be overwhelming for both of you right now.
i think that it is safe to say that most of us patients can only speak from our own experiences, and my experience with all of the treatments I have had in the last 6 years has been good, even if arduous at times.
When I was newly diagnosed, there were patients here undergoing Revlimid clinical trials! I really didn't understand much about that, but it led to a very useful new drug being approved here.
The way I see your dilemna is that if you are on the clinical trial with Dara/Rev trial, is that, if you are on the Rev only arm, you would miss out on having a Velcade/Thalomid/dex induction. These are not even the same drugs, since you have five different ones to choose from! And a malphalan/Prednisone/Velcade treatment introduces yet another two drugs.
I am sure though, that once your mother does start some treatment, the monitoring of her myeloma will be such that if one sort of treatment is not working well, then there will be other treatments to try. That is just how it is with this disease. Bonne chance!
i think that it is safe to say that most of us patients can only speak from our own experiences, and my experience with all of the treatments I have had in the last 6 years has been good, even if arduous at times.
When I was newly diagnosed, there were patients here undergoing Revlimid clinical trials! I really didn't understand much about that, but it led to a very useful new drug being approved here.
The way I see your dilemna is that if you are on the clinical trial with Dara/Rev trial, is that, if you are on the Rev only arm, you would miss out on having a Velcade/Thalomid/dex induction. These are not even the same drugs, since you have five different ones to choose from! And a malphalan/Prednisone/Velcade treatment introduces yet another two drugs.
I am sure though, that once your mother does start some treatment, the monitoring of her myeloma will be such that if one sort of treatment is not working well, then there will be other treatments to try. That is just how it is with this disease. 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
Re: Starting treatment with trial Rd + Daratumumab
Maro,
I do not think any of us non doctors can give specific advice. But the option that I think you might ask about is the VTD without going onto transplant. That still leaves you with Revlimid based options for later or the MVP possibly with ASCT if Velcade can be re-used.
The only issue with VTD will be with peripheral neuropathy both from the Velcade and thaidomide. But in the UK some use this instead of CDT for induction, which was standard with ASCT.
I did not wish ASCT and thankfully am not eligible. I had a hybrid of MVP and CyborD for first line and got to VGPR in 2 cycles. On relapse a year later I went to a Revlimid based triplet and got a CR in 2 cycles but with a lot more need for supportive care from the side affects. I have been monitored quite closely to ensure I can tolerate the harsh treatment, so am grateful.
I have some cytogenetics which appear not so good and the research suggested ASCT may not be beneficial and my research suggested Velcade based treatment in my case was possibly better than the options I was being given. I was fortunate to get the treatments. But I would say my fast responses to treatment do not necessarily mean long remissions/ stability with the disease or longer overall survival.
I probably agree that if your mother was in the dara arm with Rd this would be a very good option as triplet combinations although more aggressive seem to be more effective. Otherwise if your mother could try VTD then this might also be an option.
I do not think any of us non doctors can give specific advice. But the option that I think you might ask about is the VTD without going onto transplant. That still leaves you with Revlimid based options for later or the MVP possibly with ASCT if Velcade can be re-used.
The only issue with VTD will be with peripheral neuropathy both from the Velcade and thaidomide. But in the UK some use this instead of CDT for induction, which was standard with ASCT.
I did not wish ASCT and thankfully am not eligible. I had a hybrid of MVP and CyborD for first line and got to VGPR in 2 cycles. On relapse a year later I went to a Revlimid based triplet and got a CR in 2 cycles but with a lot more need for supportive care from the side affects. I have been monitored quite closely to ensure I can tolerate the harsh treatment, so am grateful.
I have some cytogenetics which appear not so good and the research suggested ASCT may not be beneficial and my research suggested Velcade based treatment in my case was possibly better than the options I was being given. I was fortunate to get the treatments. But I would say my fast responses to treatment do not necessarily mean long remissions/ stability with the disease or longer overall survival.
I probably agree that if your mother was in the dara arm with Rd this would be a very good option as triplet combinations although more aggressive seem to be more effective. Otherwise if your mother could try VTD then this might also be an option.
Re: Starting treatment with trial Rd + Daratumumab
Maro, je souhaite la meilleure pour ta mère.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Starting treatment with trial Rd + Daratumumab
@Nancy : Merci pour ton feedback They don't give VTD here unless you go for ASCT unfortunately.
@Little monkey : Thank you for the best wishes.
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Sent an e-mail to our doc and he said that in France they don't go by the mSMART guidelines. They don't believe that t(14;16) has sufficient data to be considered as high risk either. Go figure...
Not sure if I should be relieved or not. I guess Europe and the USA go by 2 different schools.
He also replied that Rd gives excellent results alone. I guess I'll just have to hope for the best and hope that we are in the daratumumab arm.
They don't give VTD here unless you go for ASCT unfortunately.@Little monkey : Thank you for the best wishes.
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Sent an e-mail to our doc and he said that in France they don't go by the mSMART guidelines. They don't believe that t(14;16) has sufficient data to be considered as high risk either. Go figure...
Not sure if I should be relieved or not. I guess Europe and the USA go by 2 different schools.
He also replied that Rd gives excellent results alone. I guess I'll just have to hope for the best and hope that we are in the daratumumab arm.
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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: Starting treatment with trial Rd + Daratumumab
Hello Maro:
I would like to try and answer your question, unfortunately, it's a level of detail that is too fine for my background, and I don't know, and don't want to guess. I do think that the dara arm would probably be the best option based on recent news, however, keep in mind that there is a difference between the "average" results (in terms of depth and duration of response) and what an individual might achieve. I would think, however, that your doctor myeloma specialist might be able to give you some guidance. Here are a couple of questions that come to mind:
Again, good luck. Rgds, JPC
I would like to try and answer your question, unfortunately, it's a level of detail that is too fine for my background, and I don't know, and don't want to guess. I do think that the dara arm would probably be the best option based on recent news, however, keep in mind that there is a difference between the "average" results (in terms of depth and duration of response) and what an individual might achieve. I would think, however, that your doctor myeloma specialist might be able to give you some guidance. Here are a couple of questions that come to mind:
- If on the Rd arm of the trial, what would be target response that the doctor would be looking for that he/she would be considered successful?
- If you did not reach that response in a reasonable amount of time, how would treatment be changed??
- I am not sure exactly what the insurance rules are where you are located. If on the Rd arm, at what point would it be possible to add Velcade, if needed?? It may be possible to add it post the first initial induction. If you track down and read the newsman Tom Brokaw's book, he started on Rd, and due to having a partial response, the Velcade was added, and he reported achieving a CR, with no ASCT.
Again, good luck. Rgds, JPC
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JPC - Name: JPC
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