I think this is a really good discussion with some interesting questions and great answers.
I would say, Bob, that my non-medical opinion is that you should hop on one of the two clinical trials. The recent literature seems to be that you get a deeper and more durable response by hitting the multiple myeloma with a new agent that it has not seen before. There may some options off of clinical trial in Canada, I am not sure (e.g., Pomalyst), but the two options in the clinical trials probably have a greater potential to drive an optimal response than the presently approved group of drugs.
I think that Jonah made an outstanding point regarding timing, forecasting that Kyprolis would be widely available in Canada in a year or two, and coming up with a strategy to get both drugs along the way. I would just offer the slightly opposing opinion in that if you go on the Kyprolis trial, and you hit a home run, and get a remission that lasts as long as your first remission (based on what you said, it sounds like at least three years, or so), you could then look at selinexor being potentially approved at that time (that is I copied Jonah's idea, and slightly adjusted the timing).
I have read a lot about the various clinical trials potentially available, and I think that you are fortunate to have two that seem like a match for you. My only caution is to review the side effect profiles for both drugs. If you have been off of medication for two years and are "in the pink", you probably are OK with either one. I am not familiar with the selinexor side effect profile, but Kyprolis is potentially problematic for people with pre-existing heart and lung problems.
I give credit to your doctor and to your center. Good luck, and please let us know what you have decided. Regards,
Forums
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
I have recently (April) started the trial of Velcade, dex, and selinexor. My kappa free light chain level went from around 750 down to 153 in one month!
I am not experiencing any negative side effects, other than the usual dex stuff (20 mg / week). My clinical trial nurse has told me that they are expecting fantastic results from this.
I've got my fingers crossed! Best of luck to you, Gary
I am not experiencing any negative side effects, other than the usual dex stuff (20 mg / week). My clinical trial nurse has told me that they are expecting fantastic results from this.
I've got my fingers crossed! Best of luck to you, Gary
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
There is no guarantee selinexor will ever be approved for multiple myeloma in Canada. That doesn't mean that it isn't active against multiple myeloma. It almost certainly is (as GaryH's experience suggests). But Canada is a smaller market that requires Phase 3 trials for approval, and selinexor is not approved anywhere -- for anything -- yet, and its first approval could be for something other than multiple myeloma. And Canada is stricter than the U.S. when it comes to paying for off-label use of drugs.
So, if you're Canadian and where Bob is in the evolution of his disease, there is a lot of uncertainty as to whether he would have access to selinexor later if he doesn't choose to be treated with it now.
The selinexor treatment combination may only give Bob an extra 8 or 9 months until it's time for his next treatment decision. But by that time, Kyprolis may be reimbursed, and Darzalex probably will be approved, but not yet reimbursed, in Canada. Those 8 or 9 months might be time he can't get if he relies on being able to take selinexor sometime later.
So, if you're Canadian and where Bob is in the evolution of his disease, there is a lot of uncertainty as to whether he would have access to selinexor later if he doesn't choose to be treated with it now.
The selinexor treatment combination may only give Bob an extra 8 or 9 months until it's time for his next treatment decision. But by that time, Kyprolis may be reimbursed, and Darzalex probably will be approved, but not yet reimbursed, in Canada. Those 8 or 9 months might be time he can't get if he relies on being able to take selinexor sometime later.
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Jonah
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Thank you all very much. I knew I would get the best advice here and as usual you did not disappoint.
I am a candidate for the selinexor STOMP study or my name "Stomp the H out of Myeloma".
I did bundle all the questions and had them answered to my satisfaction. I thought adding my reasoning might help others faced with study and/or treatment offers.
The way selinexor works appealed to me. It blocks the export of anti-cancer proteins from the blood cells.
The early nature of the study was a concern but I am in reasonable health and have a history of high tolerance to all the poisons they pump into us. It might have something to do with a misspent youth!
The note to consider the early test first and leave the Kyprolis treatment as a future option seemed sensible.
The trial does not exclude a future stem cell transplant or limit treatment options.
I have outstanding doctors and trust their opinion. Dr. Bahlis and Neri are renowned myeloma doctors and scientists.
I have a young family and must work so the protocol suited that best.
I am a candidate for the selinexor STOMP study or my name "Stomp the H out of Myeloma".
I did bundle all the questions and had them answered to my satisfaction. I thought adding my reasoning might help others faced with study and/or treatment offers.
The way selinexor works appealed to me. It blocks the export of anti-cancer proteins from the blood cells.
The early nature of the study was a concern but I am in reasonable health and have a history of high tolerance to all the poisons they pump into us. It might have something to do with a misspent youth!
The note to consider the early test first and leave the Kyprolis treatment as a future option seemed sensible.
The trial does not exclude a future stem cell transplant or limit treatment options.
I have outstanding doctors and trust their opinion. Dr. Bahlis and Neri are renowned myeloma doctors and scientists.
I have a young family and must work so the protocol suited that best.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Quick follow up. I started the "STOMP" clinical trial on Wednesday. It involves the investigational drug selinexor and Velcade / dexamethasone. Please be patient, but I'll post a new thread with numbers to clarify effectiveness and dosages.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Congrats on getting on to the study! I am still on it and am just coming up to cycle 4. What has been happening with me is I am feeling quite nauseous at times and have some major diarrhea. My light chains continue to drop, though not as dramatically as the first month, but they are still heading in the right direction! I continue to have high hopes for this combination of drugs.
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Thanks Gary,
I've just started Cycle 2, but the numbers are very encouraging, I'll update after 4 or 5 cycles. Interestingly, I'm suffering from constipation, followed by constipation-medicine diarrhea, and nausea has been manageable. I also remember why I didn't like high dose dexamethasone!
My light chains showed decent first cycle drop and the M-spike not quite as dramatic. This time around, kappa numbers led the charge, unlike earlier M spikes.
I've just started Cycle 2, but the numbers are very encouraging, I'll update after 4 or 5 cycles. Interestingly, I'm suffering from constipation, followed by constipation-medicine diarrhea, and nausea has been manageable. I also remember why I didn't like high dose dexamethasone!
My light chains showed decent first cycle drop and the M-spike not quite as dramatic. This time around, kappa numbers led the charge, unlike earlier M spikes.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
So, how is it going for you Canuck Bob?
I had to take myself off of the study last week due to being nauseous (vomiting a lot) all the time. It just felt that I didn't have a life, due to having to either stay home because of the side effects, or to the hospital/lab for poking and prodding! After 1 week, I still have to go for platelet and red cell transfusions. My doctor says that my marrow is not up to par and may take a while before it is better (if ever). I guess 19 years of having this multiple myeloma, and all the chemo we could throw at it, has just worn it out!
I'm in a holding pattern for a month, with no drugs and then onto a different type of drug, which I don't know what yet.
Best of luck with your clinical trial and the best of the season to you.
Gary
I had to take myself off of the study last week due to being nauseous (vomiting a lot) all the time. It just felt that I didn't have a life, due to having to either stay home because of the side effects, or to the hospital/lab for poking and prodding! After 1 week, I still have to go for platelet and red cell transfusions. My doctor says that my marrow is not up to par and may take a while before it is better (if ever). I guess 19 years of having this multiple myeloma, and all the chemo we could throw at it, has just worn it out!
I'm in a holding pattern for a month, with no drugs and then onto a different type of drug, which I don't know what yet.
Best of luck with your clinical trial and the best of the season to you.
Gary
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Gary,
Sorry for my tardiness but treatment pressures have ramped up. I am having muscle weakness in my legs. They are related to multiple situations as most of the cancer treatment are. I suspect 7 years of treatment and a lack of focus on physical exercise are partly to blame. We are adjusting STOMP dosages but I am happy to be on the trial still. It is manageable, and the response in my numbers is outstanding. I am planning a separate thread to quantify results.
Over 7 years, a stem cell transplant, multiple drug protocols, relapse, and this trial have excited a response in me to hate treatment. I masked it under a veil of "I hate cancer" and am owning up this month. This in no way is a statement on your experience. Good for you to have the courage to drop out of an often coveted seat at the table. I can imagine the impact of this decision, again good for you.
Sorry for my tardiness but treatment pressures have ramped up. I am having muscle weakness in my legs. They are related to multiple situations as most of the cancer treatment are. I suspect 7 years of treatment and a lack of focus on physical exercise are partly to blame. We are adjusting STOMP dosages but I am happy to be on the trial still. It is manageable, and the response in my numbers is outstanding. I am planning a separate thread to quantify results.
Over 7 years, a stem cell transplant, multiple drug protocols, relapse, and this trial have excited a response in me to hate treatment. I masked it under a veil of "I hate cancer" and am owning up this month. This in no way is a statement on your experience. Good for you to have the courage to drop out of an often coveted seat at the table. I can imagine the impact of this decision, again good for you.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Well, I hope everything does go well for you! I have been off of selinexor since last December, and I still need to go every week for platelet transfusions. I think it is due to my bone marrow that is just too tired.
I know what you mean when you say too much emphasis on treatment and not enough on staying in shape! You can only do what you can and take it easy at the same time.
I have started on another new med. This time it's called Ninlaro (ixazomib). So far, there are no negative side effects! Yea! I am having issues with the dex as it has caused my breathing to get very laboured. I'm constantly out of breath and the doctors think that is unusual, but the same thing happened to me 2 years ago also. I'll just keep plugging along, one day at a time!
I know what you mean when you say too much emphasis on treatment and not enough on staying in shape! You can only do what you can and take it easy at the same time.
I have started on another new med. This time it's called Ninlaro (ixazomib). So far, there are no negative side effects! Yea! I am having issues with the dex as it has caused my breathing to get very laboured. I'm constantly out of breath and the doctors think that is unusual, but the same thing happened to me 2 years ago also. I'll just keep plugging along, one day at a time!
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
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