My mum was offered to be part of a study that consists of taking ixazomib as maintenance therapy following an autologous stem cell transplant. Of course there will be 50% chance she won't be getting it.
I'm not sure if Norway has any standard regimen of maintenance therapy, so I don't think there is an option. But if ... maybe bortezomib is safer and just as good?
Any thoughts?
Thank you
Forums
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
Hello Kristine:
Briefly, just a couple of thoughts and some guides for research in making this decision. There is recent study updated this year called the CALGB study (I do not recall exact number) comparing maintenance to no maintenance for Revlimid. Revlimid may not be available in your country. This study had previously shown that Revlimid maintenance improves time to first progression. The data keeps coming in, and the update this year did actually show that Revlimid maintenance is actually statistically superior with respect to overall survival.
Velcade maintenance has been proven to be better for certain specific conditions. For example, the FISH result t(4,14). Overall, however, Revlimid and Velcade has not been compared in a study (that results have come out, anyway) for effectiveness. Actually, there was an ASCO study this year that showed that Velcade does improve outcomes over no maintenance.
Do your research, however, orally administered ixazomib, as a simplistic characterization, can be considered as a close approximation of Velcade, with similar (arguably slightly better) results. It has an overall better side effect profile, much better for peripheral neuropathy, but maybe slightly worse for gastro-intestinal issues. Side effects vary from patient to patient anyway, so it would be impossible to exactly predict them for an individual patient.
So bottom line, my non-medical opinion is that getting on an ixazomib trial for maintenance is potentially positive. It hopefully has relatively low side effects. It's orally administered, and recent data suggest that it has a good chance of improving outcomes, but that is the question that they would be studying.
Briefly, just a couple of thoughts and some guides for research in making this decision. There is recent study updated this year called the CALGB study (I do not recall exact number) comparing maintenance to no maintenance for Revlimid. Revlimid may not be available in your country. This study had previously shown that Revlimid maintenance improves time to first progression. The data keeps coming in, and the update this year did actually show that Revlimid maintenance is actually statistically superior with respect to overall survival.
Velcade maintenance has been proven to be better for certain specific conditions. For example, the FISH result t(4,14). Overall, however, Revlimid and Velcade has not been compared in a study (that results have come out, anyway) for effectiveness. Actually, there was an ASCO study this year that showed that Velcade does improve outcomes over no maintenance.
Do your research, however, orally administered ixazomib, as a simplistic characterization, can be considered as a close approximation of Velcade, with similar (arguably slightly better) results. It has an overall better side effect profile, much better for peripheral neuropathy, but maybe slightly worse for gastro-intestinal issues. Side effects vary from patient to patient anyway, so it would be impossible to exactly predict them for an individual patient.
So bottom line, my non-medical opinion is that getting on an ixazomib trial for maintenance is potentially positive. It hopefully has relatively low side effects. It's orally administered, and recent data suggest that it has a good chance of improving outcomes, but that is the question that they would be studying.
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JPC - Name: JPC
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
Dear JPC,
Thank you so much for your reply! It is greatly appreciated.
IF she joins the trial, then there is the 50% chance that she will be getting a placebo, so that makes everything difficult.
No, Revlimid is not approved yet here as maintenance therapy and, like you said, research shows that it improves progression-free survival. So I'm at a loss what to do here.
But as I see it, as the USA is a little bit more advanced than Norway, maintenance therapy is generally recommended?
Kristine
Thank you so much for your reply! It is greatly appreciated.
IF she joins the trial, then there is the 50% chance that she will be getting a placebo, so that makes everything difficult.
No, Revlimid is not approved yet here as maintenance therapy and, like you said, research shows that it improves progression-free survival. So I'm at a loss what to do here.
But as I see it, as the USA is a little bit more advanced than Norway, maintenance therapy is generally recommended?
Kristine
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
Good morning Kristine:
From my research most doctors do now prescribe maintenance for patients that can tolerate it. If you are otherwise healthy, the treatment is lower than initial induction, and it's generally tolerable, at least for a period of time.
It takes a long time to accumulate data on "overall survival", and you will see some people still skeptical, and a few doctors, too. Early indications form trials are leaning towards maintenance.
Good luck to your mom and yourself. Regards,
From my research most doctors do now prescribe maintenance for patients that can tolerate it. If you are otherwise healthy, the treatment is lower than initial induction, and it's generally tolerable, at least for a period of time.
It takes a long time to accumulate data on "overall survival", and you will see some people still skeptical, and a few doctors, too. Early indications form trials are leaning towards maintenance.
Good luck to your mom and yourself. Regards,
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JPC - Name: JPC
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
Hi Kristine,
I guess that Denmark and Norway are having close to the same procedures. Maintenance is not offered as standard after an autologous stem cell transplant (ASCT), but very early, long time before my own ASCT, I understood that it was standard to be offered to join a trial.
I assume that I am in the same trial and am sure that I am not getting placebo. The symptoms are in my case neuropathy in toes/feet, but not untolerable ... I am actually glad to be confirmed that I am not in the placebo arm of the trial
I believe that the placebo arm is 40% and that 60% will get treatment.
I guess that Denmark and Norway are having close to the same procedures. Maintenance is not offered as standard after an autologous stem cell transplant (ASCT), but very early, long time before my own ASCT, I understood that it was standard to be offered to join a trial.
I assume that I am in the same trial and am sure that I am not getting placebo. The symptoms are in my case neuropathy in toes/feet, but not untolerable ... I am actually glad to be confirmed that I am not in the placebo arm of the trial
I believe that the placebo arm is 40% and that 60% will get treatment.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
Oh really!
So does that mean it is not possible for us to have maintenance then? Revlimid seems like the most promising drug for maintenance.
I'm glad you´re not getting the placebo! If my mum enters the trial, then I cross all fingers and toes for her to get the drug as well.
So does that mean it is not possible for us to have maintenance then? Revlimid seems like the most promising drug for maintenance.
I'm glad you´re not getting the placebo! If my mum enters the trial, then I cross all fingers and toes for her to get the drug as well.
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
727 - Ixazomib, an Investigational Oral Proteasome Inhibitor (PI), in Combination with Lenalidomide and Dexamethasone (IRd), Significantly Extends Progression-Free Survival (PFS) for Patients (Pts) with Relapsed and/or Refractory Multiple Myeloma (RRMM): The Phase 3 Tourmaline-MM1 Study (NCT01564537)
The abstracts from ASH (American Soc. of Hematology) are really interesting to read, and there are thousands of them! This abstract reports on the phase 3 Tourmaline study, and features researchers from France, Hungary, Canada, Poland, Czech Rep. N.Z., Denmark, Italy, and the U.S. The lead researcher is Dr. Phillippe Moreau, of Nantes, France.
As an oral proteasome inhibitor, ixazomib, would seem to be convenient and also extends progression-free survival for relapsed and refractory myeloma patients.
The abstracts from ASH (American Soc. of Hematology) are really interesting to read, and there are thousands of them! This abstract reports on the phase 3 Tourmaline study, and features researchers from France, Hungary, Canada, Poland, Czech Rep. N.Z., Denmark, Italy, and the U.S. The lead researcher is Dr. Phillippe Moreau, of Nantes, France.
As an oral proteasome inhibitor, ixazomib, would seem to be convenient and also extends progression-free survival for relapsed and refractory myeloma patients.
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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: Ixazomib (MLN9708) maintenance therapy - clinical trial
I have started the clinical trial for maintenance after stem cell transplant using ixazomib alternating with Revlimid:
https://clinicaltrials.gov/ct2/show/NCT02619682
So far I've had two doses of the ixazomib.
I'm interested in checking with others about any side effects they may have experienced.
https://clinicaltrials.gov/ct2/show/NCT02619682
So far I've had two doses of the ixazomib.
I'm interested in checking with others about any side effects they may have experienced.
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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
Re: Ixazomib (MLN9708) maintenance therapy - clinical trial
Hi heddleandhook,
That trial looks very interesting. Best wishes to you. I hope you tolerate the treatment well and that it keeps your myeloma at bay.
Please keep us posted on how things go.
Mike
That trial looks very interesting. Best wishes to you. I hope you tolerate the treatment well and that it keeps your myeloma at bay.
Please keep us posted 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: Ixazomib (MLN9708) maintenance therapy - clinical trial
Hi Kristine,
I am Norwegian myself, and will soon start treatment. As far as I know, there are limited options to use maintenance in Norway. The ixazomib trial is interesting, as some like to call ixazomib "Velcade in oral form," even though it has a different chemical structure and potentially has slightly different characteristics compared to Velcade (bortezomib).
There is no guarantee that ixazomib as a maintenance therapy gives improved survival, although I find that likely. The trial will also document side effects, which also is important, as quality of life must be balanced to prolonged survival (or PFS).
If possible I would like to join this trial, as I don't see any better alternatives at the moment.
I am Norwegian myself, and will soon start treatment. As far as I know, there are limited options to use maintenance in Norway. The ixazomib trial is interesting, as some like to call ixazomib "Velcade in oral form," even though it has a different chemical structure and potentially has slightly different characteristics compared to Velcade (bortezomib).
There is no guarantee that ixazomib as a maintenance therapy gives improved survival, although I find that likely. The trial will also document side effects, which also is important, as quality of life must be balanced to prolonged survival (or PFS).
If possible I would like to join this trial, as I don't see any better alternatives at the moment.
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JohnC - Name: JohnC
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 47
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