Hello everyone,
I hope everyone is enjoying the beginnings of summer. Let’s hope it’s a pleasant one this year.
Does anyone have any information about what to expect in terms of efficacy and side effects with the combination of Empliciti (elotuzumab) and Ninlaro (ixazomib), particularly in relapsed myeloma after a number of prior lines of therapy.
I was just started on it to treat my latest relapse. I have not seen this particular combination mentioned before. Rather, Empliciti is generally given in combination with lenalidomid (Revlimid) or pomalidomide (Pomalyst). Lenalidomide did not work for me, and I had a bad reaction to pomalidomide.
Thanks in advance for any information or thoughts.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Empliciti & Ninlaro for multiple myeloma
The doctors I've spoken with don’t seem very impressed with Empliciti, but my numbers are creeping up and I’m running out of options. Only drugs I haven’t tried are Krprolis, which is contraindicated for me, and Empliciti. I'm also considering taking part in a trial for melflufen, which is related to melphalan.
I follow your posts because, like you, I walk and waver the line between giving up or looking for new treatments and mustering up the hope and strength to soldier on.
I follow your posts because, like you, I walk and waver the line between giving up or looking for new treatments and mustering up the hope and strength to soldier on.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Empliciti & Ninlaro for multiple myeloma
Thank you, Melpen.
Yes, that’s the way I feel. Some days I do really feel like throwing in the towel, and on others I feel inclined to stay in the game, but it does get harder.
I actually was on Kyprolis for over a year, and it worked well, but it caused heart damage, and so I had to give it up.
I have not heard of melflufen. I hope that turns out to be a good option for you. I am on a waiting list for both CAR T-cell and BiTE clinical trials, but it’s probably a long shot for me to get into either.
I want to wish you the best of luck with your treatment!
Yes, that’s the way I feel. Some days I do really feel like throwing in the towel, and on others I feel inclined to stay in the game, but it does get harder.
I actually was on Kyprolis for over a year, and it worked well, but it caused heart damage, and so I had to give it up.
I have not heard of melflufen. I hope that turns out to be a good option for you. I am on a waiting list for both CAR T-cell and BiTE clinical trials, but it’s probably a long shot for me to get into either.
I want to wish you the best of luck with your treatment!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Empliciti & Ninlaro for multiple myeloma
It's my understanding that Empliciti by itself is not nearly as effective as in combination with either a proteasome inhibitor (PI) or immunomodulatory agent (Imid) plus dex. In some cases, a four-drug protocol, Empliciti plus both a PI and an Imid plus dex.
Ninlaro is an oral PI, but from what I have read, it has not been nearly as effective as the other two, Velcade and Kyprolis, which are not oral. The Imids include Revlimid, Pomalyst, and thalidomide, and are all oral.
There are a lot of new drugs in development (see the press release section of the Beacon), so a lot of alternatives through clinical trials may become available. I also note that Darzelex is now being joined in a quad treatment combined with a PI,Imid, and dex. These quad uses are new and may allow drugs that were not effective as single and double agents to find new life.
Ninlaro is an oral PI, but from what I have read, it has not been nearly as effective as the other two, Velcade and Kyprolis, which are not oral. The Imids include Revlimid, Pomalyst, and thalidomide, and are all oral.
There are a lot of new drugs in development (see the press release section of the Beacon), so a lot of alternatives through clinical trials may become available. I also note that Darzelex is now being joined in a quad treatment combined with a PI,Imid, and dex. These quad uses are new and may allow drugs that were not effective as single and double agents to find new life.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Empliciti & Ninlaro for multiple myeloma
Thank you, Ron.
If you know of an approved combination of Empliciti (elotuzumab), and any proteasome inhibitor, I’d like to hear about it. So far, the only FDA approved combinations of Empliciti I know of are with immunomodulatory drugs - either with Revlimid (lenalidomide) or Pomalyst (pomalidomide), plus dexamethasone.
The only reference to a combination of Empliciti and a proteasome inhibitor I have been able to find was a Phase 2 clinical trial with Velcade (bortezomib), in 2016.
You mention the source of my concern - Empliciti by itself does not seem to be effective as a single agent. So perhaps I am getting an experimental treatment with this Ninlaro (ixazomib) combo.
I was on Ninlaro as maintenance after my stem cell transplant until I relapsed. None of the immunomodulatory drugs have worked for me.
Of the proteasome inhibitors, Velcade didn’t work but Kyprolis (carfizomib) did, but it caused heart damage, and so I had to discontinue it.
The Ninlaro plus Empliciti is my current post-relapse treatment. But it’s a bit anxiety-producing not to be on an approved treatment.
If you know of an approved combination of Empliciti (elotuzumab), and any proteasome inhibitor, I’d like to hear about it. So far, the only FDA approved combinations of Empliciti I know of are with immunomodulatory drugs - either with Revlimid (lenalidomide) or Pomalyst (pomalidomide), plus dexamethasone.
The only reference to a combination of Empliciti and a proteasome inhibitor I have been able to find was a Phase 2 clinical trial with Velcade (bortezomib), in 2016.
You mention the source of my concern - Empliciti by itself does not seem to be effective as a single agent. So perhaps I am getting an experimental treatment with this Ninlaro (ixazomib) combo.
I was on Ninlaro as maintenance after my stem cell transplant until I relapsed. None of the immunomodulatory drugs have worked for me.
Of the proteasome inhibitors, Velcade didn’t work but Kyprolis (carfizomib) did, but it caused heart damage, and so I had to discontinue it.
The Ninlaro plus Empliciti is my current post-relapse treatment. But it’s a bit anxiety-producing not to be on an approved treatment.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Empliciti & Ninlaro for multiple myeloma
Both Darzalex and Empliciti are monoclonal antibodies. Not sure I have ever read why Darzalex has been approved in combination with either an immunomodulatory agent (ImiD) or a proteasome inhibitor (PI) with dex (now both ImiD and PI) but Empliciti only with an ImiD and dex. Granted they operate differently, targeting different proteins (CD38 vs. SLAMF7). However, I suspect that the drug manufacturer of Darzalex is just further along in its testing and thus FDA approval. ImIDs and PIs have been combined for years with dex. The only issue is whether or not a PI in combination with Empliciti has had some adverse side effects. I am not aware of any such literature. I am sure your treating oncologist would not have prescribed a PI if he thought it was unsafe. On the other hand, I would have expected some push back from your insurance carrier.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Empliciti & Ninlaro for multiple myeloma
I am currently on Empliciti after an allogeneic stem cell transplant, which I had in February. I am high risk with 17p deletion and 21q gain. The Empliciti with dexamethasone has helped lower my M-spike post transplant. I have no side effects from it. At least in my case, it is working as a doublet treatment with the dexamethasone. (I just started taking Pomalyst again, once a week, to boost my immune system, but I doubt that qualifies as a triplet therapy.)
Prior to the transplant, I had taken Ninlaro with Pomalyst and dexamethasone and only had fatigue as a side effect. I also had some memory / attention issues, but we couldn't pin down the culprit. Ninlaro gave me longer results (1 year until the disease became refractory) than Velcade (2 cycles) or Kyprolis (5 cycles), so even with your heavily pretreated myeloma and high risk genetics, I would think it is certainly possible to get some benefit from the combination. At least, I hope you do!
Prior to the transplant, I had taken Ninlaro with Pomalyst and dexamethasone and only had fatigue as a side effect. I also had some memory / attention issues, but we couldn't pin down the culprit. Ninlaro gave me longer results (1 year until the disease became refractory) than Velcade (2 cycles) or Kyprolis (5 cycles), so even with your heavily pretreated myeloma and high risk genetics, I would think it is certainly possible to get some benefit from the combination. At least, I hope you do!
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stefania888 - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 30
Re: Empliciti & Ninlaro for multiple myeloma
Just to add to this thread about Empiciti, a monoclonal antibody, being used with a proteasome inhibitor, such as bortezomib, I found a study detailed in Blood Journal
Elotuzumab Plus Bortezomib and Dexamethasone Versus Bortezomib ...
http://www.bloodjournal.org/content/126/23/510
The study showed that adding Emipliciti to bortezomib and dex did improve the overall survival and progression free survival, compared to bortezomib plus dex .
Elotuzumab Plus Bortezomib and Dexamethasone Versus Bortezomib ...
http://www.bloodjournal.org/content/126/23/510
The study showed that adding Emipliciti to bortezomib and dex did improve the overall survival and progression free survival, compared to bortezomib plus dex .
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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: Empliciti & Ninlaro for multiple myeloma
Ron, thank you.
Good question based on the parallels with Darzalex.
I have found nothing with the exception of the one study I referenced about combining Empliciti with a proteasome inhibitor. That could help explain why there is no information about adverse effects.
I personally have had no adverse effects from combining Empliciti with Ninlaro over the three weeks I have been on it.
There was no pushback from my insurance, which is Medicare.
Stefania888,
Thank you for your post! It is really good news to hear about the effectiveness of Empliciti as a single agent in your case. I wish you continued luck with it!
It also is encouraging for me because I could at least get that benefit, even if the combination with Ninlaro is not synergetic.
Nancy, thank you.
The study you refer to is the same one I referenced. My reference source was a different publication dated a year later. The question is why there has been nothing further on combinations of Empliciti with proteasome inhibitors more recently. 2015 was quite a while ago in the world of myeloma treatments.
Good question based on the parallels with Darzalex.
I have found nothing with the exception of the one study I referenced about combining Empliciti with a proteasome inhibitor. That could help explain why there is no information about adverse effects.
I personally have had no adverse effects from combining Empliciti with Ninlaro over the three weeks I have been on it.
There was no pushback from my insurance, which is Medicare.
Stefania888,
Thank you for your post! It is really good news to hear about the effectiveness of Empliciti as a single agent in your case. I wish you continued luck with it!
It also is encouraging for me because I could at least get that benefit, even if the combination with Ninlaro is not synergetic.
Nancy, thank you.
The study you refer to is the same one I referenced. My reference source was a different publication dated a year later. The question is why there has been nothing further on combinations of Empliciti with proteasome inhibitors more recently. 2015 was quite a while ago in the world of myeloma treatments.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Empliciti & Ninlaro for multiple myeloma
Hi again, Mr. P.!
Your posts twigged my memory and I remembered that New Brunswick uses Darzalex along with bortezomib (Velcade) (see related forum post). As I understand it, it is not used with Revlimid! But when I looked at what the other provinces have funded in Canada (from the thread 'Canada and Multiple Myeloma'), I noticed that Darzalex could be used either with Revlimid or bortezomib. Bortezomib is the generic name for the active agent in Velcade, and is available in generic form in Canada, so it is more affordable.
There are stipulations around the use of these drugs here, but I would think that you could ask your doctors about this if you thought it would be of help to you.
Your posts twigged my memory and I remembered that New Brunswick uses Darzalex along with bortezomib (Velcade) (see related forum post). As I understand it, it is not used with Revlimid! But when I looked at what the other provinces have funded in Canada (from the thread 'Canada and Multiple Myeloma'), I noticed that Darzalex could be used either with Revlimid or bortezomib. Bortezomib is the generic name for the active agent in Velcade, and is available in generic form in Canada, so it is more affordable.
There are stipulations around the use of these drugs here, but I would think that you could ask your doctors about this if you thought it would be of help to you.
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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
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