I was diagnosed in early 2011. I have the dreaded 17p deletion. My induction was with Velcade, Revlimid, and dexamethasone (VRD), plus a round of VD-PACE. In July of 2012 I underwent a stem cell transplant, which gave me a remission that lasted a little over two years. Upon returning to therapy, I was refractory to the VRD and my lambda free light chain numbers started to rocket up.
I am now on Kyprolis, Cytoxan (cyclophosphamide), and dex, which has been very effective, but debilitating. I plan on dropping the Cytoxan to determine if Kyprolis-dex will work for now.
As with any of these drugs, they will likely only be effective for a period of time. As with any treatment, I'm always looking out for the next option.
My question is about the Ninlaro. Is it virtually the same as Velcade, or is it an additional treatment option for me?
Forums
Re: Ninlaro (ixazomib) vs. Velcade
Hello Lee:
You ask a very interesting question. From what I have heard, ixazomib (Ninlaro) is very close in formulation to Velcade, but not exactly the same. Interestingly, I recall that even though its very close to Velcade, it was found to be effective in some cases (albeit something like only 10%) where patients became Velcade refractory.
The most basic question that I have seen asked is whether or not ixazomib can be a substitute for Velcade, since its a much more convenient oral form. The answer from the experts at this point I take was that it was a reasonable assumption that it could be, but that has not yet been established in studies. Most particularly, Velcade has been established as effective for the t(4,14) abnormality. We do not know for sure yet will the effectiveness carry over to the oral formulation. I think it has been established, however, that Revlimid-ixazomib-dexamethasone is very very close to Revlimid-Velcade-dexamethasone for newly diagnosed and early relapse, when evaluated on overall larger populations under study.
So I think that there is a chance, probably small, that ixazomib could help your situation. In terms of options, however, I would like to respectfully point out the monoclonal antibodies (daratumumab and elotuzumab) would probably be next up. Early reports for both seem to indicate that each has good effectiveness on the various cytogenetic abnormalities (CA's). Simplistically, the monoclonal antibodies act on the surface of the multiple myeloma cells. The CA's are internal to the multiple myeloma cells, and they do not impede the action of the monoclonal antibodies.
Lastly, since carfilizimib is moving up into the front line, and if you actually use it first, and it works, and you become refractory to it, do you have a chance with Velcade (or ixazomib)? For that question, I think, its too early to tell, but we might start to hear some input on that issue from the more creative doctors in the near future. Good luck to you.
You ask a very interesting question. From what I have heard, ixazomib (Ninlaro) is very close in formulation to Velcade, but not exactly the same. Interestingly, I recall that even though its very close to Velcade, it was found to be effective in some cases (albeit something like only 10%) where patients became Velcade refractory.
The most basic question that I have seen asked is whether or not ixazomib can be a substitute for Velcade, since its a much more convenient oral form. The answer from the experts at this point I take was that it was a reasonable assumption that it could be, but that has not yet been established in studies. Most particularly, Velcade has been established as effective for the t(4,14) abnormality. We do not know for sure yet will the effectiveness carry over to the oral formulation. I think it has been established, however, that Revlimid-ixazomib-dexamethasone is very very close to Revlimid-Velcade-dexamethasone for newly diagnosed and early relapse, when evaluated on overall larger populations under study.
So I think that there is a chance, probably small, that ixazomib could help your situation. In terms of options, however, I would like to respectfully point out the monoclonal antibodies (daratumumab and elotuzumab) would probably be next up. Early reports for both seem to indicate that each has good effectiveness on the various cytogenetic abnormalities (CA's). Simplistically, the monoclonal antibodies act on the surface of the multiple myeloma cells. The CA's are internal to the multiple myeloma cells, and they do not impede the action of the monoclonal antibodies.
Lastly, since carfilizimib is moving up into the front line, and if you actually use it first, and it works, and you become refractory to it, do you have a chance with Velcade (or ixazomib)? For that question, I think, its too early to tell, but we might start to hear some input on that issue from the more creative doctors in the near future. Good luck to you.
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JPC - Name: JPC
Re: Ninlaro (ixazomib) vs. Velcade
JPC, thanks for the excellent summary.
David
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Ninlaro (ixazomib) vs. Velcade
I asked my oncologist about Ninlaro as a substitute fo Velcade since it is oral and I would not have to come in for my shot. He wants to see more data on it before prescribing it. You skip the shot, but do you have to still go in for labs before you take it? Everytime I get Velcade, they run CBC that they check before they give me the shot. For me this occurs once every two weeks, corresponding to my Velcade shot. I have never had issues with my blood counts to where they would not administer the shot. If Ninlaro is similar to Velcade, then would the labs still be required? If so, then that defeats the convenience of the oral medication.
The other thing is that since Ninlaro is oral, it will likely fall under the prescription drug and not clinical side of Medicare (Part D as opposed to A&B). Thus it will cost the patient more than Velcade.
Instead of one of the proteasome inhibitors, you may want to ask your oncologist about one of the newly approved monoclonal antibodies, Darzalex (daratumumab) or Empliciti (elotuzumab). Both of these drugs in combination with dexamethasone and Revlimid have been effective in the relapse environment for patients who have become refractory to RVD. I am especially excited by Darzalex, which in early tests proves to have worked very well with lasting results.
The other thing is that since Ninlaro is oral, it will likely fall under the prescription drug and not clinical side of Medicare (Part D as opposed to A&B). Thus it will cost the patient more than Velcade.
Instead of one of the proteasome inhibitors, you may want to ask your oncologist about one of the newly approved monoclonal antibodies, Darzalex (daratumumab) or Empliciti (elotuzumab). Both of these drugs in combination with dexamethasone and Revlimid have been effective in the relapse environment for patients who have become refractory to RVD. I am especially excited by Darzalex, which in early tests proves to have worked very well with lasting results.
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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: Ninlaro (ixazomib) vs. Velcade
The assumption that a drug may cost more because it comes under Medicare Part D instead of Part B may not be exactly correct. These drugs are often so expensive that, once you start them, you go into the catastrophic coverage almost immediately. Then part D pays 95% of the costs. Patient co-pay assistance programs are available for those who qualify and in my case covered the entire co-pay amount. Best to check out your individual situation before assuming one will be more cost effective than the other.
Charlie
Charlie
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Ninlaro (ixazomib) vs. Velcade
Charlie -
I agree with you about the cost of the oral drugs. Under Medicare, once you have gotten your first prescription of the year under your Part D insurance – in my case Revlimid is over $2000 for the first prescription – you then you only pay 5% of the cost of the drug. But, that can still be expensive. My prescription plan bills $550 a month for a 21-day supply of Revlimid 10 mg.
A lot depends on the Part D plan that you choose. I looked for the ones that had the lowest co-pay in my region, which varied from 25% to 50%. Then I looked at what drugs were covered in the formulary of the ones that I take on a regular basis and the ones that have been prescribed to me for acute illnesses. I learned to do this after I found that the first plan that I had chosen didn't cover prescription steroid eye drops that I use daily and didn't cover some pain prescriptions that I needed for a broken foot. It takes lots of research and asking questions of the insurance companies in your particular region.
Lee May -
Recently I read an article about the mode of action of Ninlaro compared to the other proteasome inhibitors. It stated that Ninlaro works on the proteasomes sooner in the cascade of events of its function so has a much better action on the proteasome. The scientists are also beginning to find that because of where it attacks the proteasome, it also has some other beneficial effects against myeloma over the long term. I think that I am stating what I read correctly.
I hope you get the information that will help you make a good decision for you.
Nancy in Phila
I agree with you about the cost of the oral drugs. Under Medicare, once you have gotten your first prescription of the year under your Part D insurance – in my case Revlimid is over $2000 for the first prescription – you then you only pay 5% of the cost of the drug. But, that can still be expensive. My prescription plan bills $550 a month for a 21-day supply of Revlimid 10 mg.
A lot depends on the Part D plan that you choose. I looked for the ones that had the lowest co-pay in my region, which varied from 25% to 50%. Then I looked at what drugs were covered in the formulary of the ones that I take on a regular basis and the ones that have been prescribed to me for acute illnesses. I learned to do this after I found that the first plan that I had chosen didn't cover prescription steroid eye drops that I use daily and didn't cover some pain prescriptions that I needed for a broken foot. It takes lots of research and asking questions of the insurance companies in your particular region.
Lee May -
Recently I read an article about the mode of action of Ninlaro compared to the other proteasome inhibitors. It stated that Ninlaro works on the proteasomes sooner in the cascade of events of its function so has a much better action on the proteasome. The scientists are also beginning to find that because of where it attacks the proteasome, it also has some other beneficial effects against myeloma over the long term. I think that I am stating what I read correctly.
I hope you get the information that will help you make a good decision for you.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Ninlaro (ixazomib) vs. Velcade
Hey Ron,
I've also wondered about the CBC testing issue and the suggested CBC testing frequency as well wrt Ninlaro.
Also, having never been on any multiple myeloma drugs, I've also wondered if every patient always gets a CBC prior to their Velcade injection or not? Or is that just the policy of some select doctors?
If a person has been on Velcade for a few weeks or months, getting re-tested every two weeks (or however frequently one's Velcade injections are) has always struck me as being excessive. However, it completely makes sense to me that one would get re-tested for the first few injections if one was just starting out on Velcade. After all, would one really unexpectedly and suddenly develop thrombocytopenia (low platelet level) in a matter of a couple of weeks if one's platelet levels had been relatively stable for awhile while on an proteasome inhibitor such as Velcade?
I've also wondered about the CBC testing issue and the suggested CBC testing frequency as well wrt Ninlaro.
Also, having never been on any multiple myeloma drugs, I've also wondered if every patient always gets a CBC prior to their Velcade injection or not? Or is that just the policy of some select doctors?
If a person has been on Velcade for a few weeks or months, getting re-tested every two weeks (or however frequently one's Velcade injections are) has always struck me as being excessive. However, it completely makes sense to me that one would get re-tested for the first few injections if one was just starting out on Velcade. After all, would one really unexpectedly and suddenly develop thrombocytopenia (low platelet level) in a matter of a couple of weeks if one's platelet levels had been relatively stable for awhile while on an proteasome inhibitor such as Velcade?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Ninlaro (ixazomib) vs. Velcade
Dear Lee May,
I also have the dreaded 17p deletion factor. I am currently on Velcade injections that I receive every 2 weeks. Yes, my oncologist runs a CBC each time I go in for my shot. The blood work is checked BEFORE the oncologist gives the OK to go ahead with that day's injection. I also receive Zometa once a month. I am not on any Dex at this time. My local oncologist has no plans to switch me to Ninlaro at this time. He said Velcade is working great and keeping my M-Spike to "non-detectable" so we are staying with this plan for now.
I'm approaching my one year anniversary of my auto SCT and will return to Mayo in the next 6 - 8 weeks to visit my Myeloma Specialist. I will undergo some of the various tests including a bone marrow biopsy and see where I stand at that point. I will ask the Mayo doc what his opinion is between Ninlaro and Velcade.
I also have the dreaded 17p deletion factor. I am currently on Velcade injections that I receive every 2 weeks. Yes, my oncologist runs a CBC each time I go in for my shot. The blood work is checked BEFORE the oncologist gives the OK to go ahead with that day's injection. I also receive Zometa once a month. I am not on any Dex at this time. My local oncologist has no plans to switch me to Ninlaro at this time. He said Velcade is working great and keeping my M-Spike to "non-detectable" so we are staying with this plan for now.
I'm approaching my one year anniversary of my auto SCT and will return to Mayo in the next 6 - 8 weeks to visit my Myeloma Specialist. I will undergo some of the various tests including a bone marrow biopsy and see where I stand at that point. I will ask the Mayo doc what his opinion is between Ninlaro and Velcade.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Ninlaro (ixazomib) vs. Velcade
Dear Multibilly,
I suspect the requirement for the CBC is caused by one of the following:
1. An insurance requirement
2. An internal policy to prevent malpractice claims
I suspect the requirement for the CBC is caused by one of the following:
1. An insurance requirement
2. An internal policy to prevent malpractice claims
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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: Ninlaro (ixazomib) vs. Velcade
The oral medications Revlimid and Pomylast do not require CBCs every time you take the drugs. Typically the CBC would be run once every 28 days corresponding with the protocol of 21 days on and 7 days off.
Could be that a subcutaneous shot falls under the same lab required guidelines as infusions. Therefore, it is possible, that when it comes to CBCs, Ninlaro will be treated more like Revlimid than Velcade or Kyprolis.
Could be that a subcutaneous shot falls under the same lab required guidelines as infusions. Therefore, it is possible, that when it comes to CBCs, Ninlaro will be treated more like Revlimid than Velcade or Kyprolis.
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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
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