Hi everyone,
Well, I seem to be getting to the point in my treatment where I'm not having as long a response to new drugs as I used to (I was diagnosed at the end of 2010.) The doctor tracks my multiple myeloma by looking at my kappa light chains, and they had started to creep up again after I'd been on a Ninlaro, Revlimid, and dexamethasone regimen for almost a year. At that point she switched out the Revlimid for Pomalyst, and I had a very good response in the first cycle, but after that the numbers started to go up again. One thing I did wonder was that she suggested I take half the recommended dex dose (so 20 mg instead of 40) as I've been having ongoing issues with dry eyes /blurriness, and she thought that might help. Unfortunately, it didn't, and I don't know if being on the lower dose of dex would affect my response to this drug combo (the doctor doesn't think so.)
Now the doctor is recommending that I enroll in a clinical trial for a new drug known as CLR 131, which is a radioactive drug that destroys the myeloma cells but leaves the healthy ones alone. In earlier trials it's had some encouraging results. It's also kind of appealing because it's one infusion and then just blood work monitoring for three months to see if it's working. If it seems to be working at 3 months, participants can get a second infusion.
I was wondering if anyone here might have more information about what sort of side effects to expect with the drug, restrictions associated with being on it, and efficacy.
I have a big family trip planned to the UK at the beginning of November, and I'm trying to figure out if I can get started on this before I go.
Thanks!
Karen
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Re: CLR 131 for multiple myeloma: side effects, efficacy?
Hi Karen,
I don't have any experience with CLR 131, but this press release indicates that the patient being treated with CLR 131 would take 40 mg. of dex once a week for up to 12 weeks.
https://myelomabeacon.org/pr/2017/08/08/clr-131-overall-survival-multiple-myeloma/
Other than that, the press release did not report on side effects.
Best wishes with your holiday planning!
I don't have any experience with CLR 131, but this press release indicates that the patient being treated with CLR 131 would take 40 mg. of dex once a week for up to 12 weeks.
https://myelomabeacon.org/pr/2017/08/08/clr-131-overall-survival-multiple-myeloma/
Other than that, the press release did not report on side effects.
Best wishes with your holiday planning!
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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: CLR 131 for multiple myeloma: side effects, efficacy?
HI Karen,
Sorry to hear that you aren't responding well to your treatments. The file below is the best overview on CLR 131 phase 1 test results that I've seen so far. It includes comments on CLR 131's side effects and efficacy.
If I'm reading your post correctly, it doesn't sound like you've tried any of the new monoclonal antibody (MAB) treatments such as Darzalex or Empliciti. Do you know why your doctor is suggesting the CLR-131 approach over a cocktail that would include an already FDA-approved MAB? Don't get me wrong and think that I'm advocating an MAB over the CLR-131 approach. I'm just curious why he/she thinks that CLR-131 is the best approach for you.
Sorry to hear that you aren't responding well to your treatments. The file below is the best overview on CLR 131 phase 1 test results that I've seen so far. It includes comments on CLR 131's side effects and efficacy.
If I'm reading your post correctly, it doesn't sound like you've tried any of the new monoclonal antibody (MAB) treatments such as Darzalex or Empliciti. Do you know why your doctor is suggesting the CLR-131 approach over a cocktail that would include an already FDA-approved MAB? Don't get me wrong and think that I'm advocating an MAB over the CLR-131 approach. I'm just curious why he/she thinks that CLR-131 is the best approach for you.
CLRB-Corporate-Presentation-8.25.17-1v2.pdf- (1.83 MiB) Downloaded 125 times
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: CLR 131 for multiple myeloma: side effects, efficacy?
Multibilly, thanks for your comments and for the information, that's very helpful.
I actually was on Empliciti (elotuzumab) for a short time, but it was not effective. I think part of the problem is that it's taken with Revlimid and I am definitely not responding to that any longer. My doctor did mention that there were other drugs that we haven't tried yet, including one (name of which I can't recall) which requires two back-to-back infusions each week. Since I've been doing a lot of traveling, I'm hoping to avoid being tied down in that way.
I believe my doctor is advocating for this trial of CLR 131 because it's been showing longer survival rates for people with refractory myeloma who have received a lot of treatment. Also, the idea that you only need to get one shot and then just the dex once a week (I'm resigned to the fact that there will always be dex!) is appealing. Of course, being a trial there will be a lot of required blood work and other tests.
Karen
I actually was on Empliciti (elotuzumab) for a short time, but it was not effective. I think part of the problem is that it's taken with Revlimid and I am definitely not responding to that any longer. My doctor did mention that there were other drugs that we haven't tried yet, including one (name of which I can't recall) which requires two back-to-back infusions each week. Since I've been doing a lot of traveling, I'm hoping to avoid being tied down in that way.
I believe my doctor is advocating for this trial of CLR 131 because it's been showing longer survival rates for people with refractory myeloma who have received a lot of treatment. Also, the idea that you only need to get one shot and then just the dex once a week (I'm resigned to the fact that there will always be dex!) is appealing. Of course, being a trial there will be a lot of required blood work and other tests.
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: CLR 131 for multiple myeloma: side effects, efficacy?
Thanks for the follow-up Karen,
I've always been intrigued by the sort of approach used by CLR-131 (identifying cancer cells and then delivering radioactive isotopes exclusively into those targeted cells).
Good luck with your decision and please let us know what you decide to do.
I've always been intrigued by the sort of approach used by CLR-131 (identifying cancer cells and then delivering radioactive isotopes exclusively into those targeted cells).
Good luck with your decision and please let us know what you decide to do.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: CLR 131 for multiple myeloma: side effects, efficacy?
My myeloma specialist is at Loyola University near Chicago, and Loyola is one of the centers participating in the clinical trail for CLR 131. My specialist calls CLR 131 "liquid radiation" and has told me that the results are very promising and he is very enthusiastic when talking about the trial.
Other than that, I don't have any more info on it. I am on maintenance three years post autologous stem cell transplant and have not relapsed yet, so I don't qualify for the trial.
Good luck to you.
Other than that, I don't have any more info on it. I am on maintenance three years post autologous stem cell transplant and have not relapsed yet, so I don't qualify for the trial.
Good luck to you.
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Fino
6 posts
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