Hello,
My husband took Ninlaro and Cytoxan for two cycles (please see my earlier posts explaining why he wasn't also taking Revlimid and dex.) He felt very good on Ninlaro and Cytoxan – better than he has in over a year. His shortness of breath lessened as well as fatigue. His neuropathy started lessening, too. Unfortunately, his M-protein increased both months he was on them.
We met with his hematologist today to discuss the disappointing results. My husband is now considering joining a clinical trial of atezolizumab (MPDL3280A), a monoclonal antibody. He's reviewing the 25-page document about the study while I'm googling it.
I'm hoping that Ninlaro works really well for everyone else that posted here.
Best wishes,
Chris M.
Forums
Re: Ninlaro (ixazomib) - what to expect?
Hi Melissa,
We're almost neighbors: I live in Mattapoisett, just west of Wareham and Marion, off of Route 195.
I was on 25 mg Revlimid + 20 mg dex for the past 3 years after a February 2009 autologous stem cell transplant (ASCT) began to gradually fail (after a good run of almost 3.5 yrs). In January I started a new drug regimen:
10 mg Revlimid + 20 mg dex (both daily for 3 weeks)+ 1 Ninlaro (once weekly / 3 weeks).
After 2 cycles, my lamda light chains have decreased by 33% to 571. My doc wanted to reduce the Revlimid because of increased neuropathy in my feet / legs, and doesn't like me on a drug for longer than 3 years. I was diagnosed in September 2008.
I've not seen a decrease in neuropathy yet, but have had no ill effects of the Ninlaro.
The only other drugs I've taken: Velcade for induction therapy at diagnosis and the pre-ASCT melphalan "bomb." I only had 4 rounds of Velcade as I had a terrible neuropathy response while on it.
I was initially resistant to trying Ninlaro as it had just been approved. My doc and my wife (a nurse) convinced me, and so far it has been the right decision for me.
Hope this perspective helps.
- Bev Baccelli
We're almost neighbors: I live in Mattapoisett, just west of Wareham and Marion, off of Route 195.
I was on 25 mg Revlimid + 20 mg dex for the past 3 years after a February 2009 autologous stem cell transplant (ASCT) began to gradually fail (after a good run of almost 3.5 yrs). In January I started a new drug regimen:
10 mg Revlimid + 20 mg dex (both daily for 3 weeks)+ 1 Ninlaro (once weekly / 3 weeks).
After 2 cycles, my lamda light chains have decreased by 33% to 571. My doc wanted to reduce the Revlimid because of increased neuropathy in my feet / legs, and doesn't like me on a drug for longer than 3 years. I was diagnosed in September 2008.
I've not seen a decrease in neuropathy yet, but have had no ill effects of the Ninlaro.
The only other drugs I've taken: Velcade for induction therapy at diagnosis and the pre-ASCT melphalan "bomb." I only had 4 rounds of Velcade as I had a terrible neuropathy response while on it.
I was initially resistant to trying Ninlaro as it had just been approved. My doc and my wife (a nurse) convinced me, and so far it has been the right decision for me.
Hope this perspective helps.
- Bev Baccelli
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BevBac - Name: Bev Baccelli
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 59
Re: Ninlaro (ixazomib) - what to expect?
Follow up on experience with Ninlaro.
Two months of treatment at 4 mg weekly, three weeks on, one week off.
Never developed any significant peripheral neuropathy. However did develop acute gastritis. Prilosec (omeprazole) helped, but bloating continued.
Heart palpitations developed during second month of Ninlaro. After many tests, it was determined that my heart is both mechanically and electrically fine. The theory is that Ninlaro may have contributed to autonomic nervous system problem. Oncologist was uncomfortable continuing treatment. There appears to be very little that can be done other than wait and hope.
Three months after discontinuation of Ninlaro, heart palpitations still occur, but less severe.
Ninlaro is taken on an empty stomach and no food for an hour after taking pill. It creates a strong acid that causes the gastritis.
Eating a high calorie-high fat snack is not recommended. Medical reports indicate that the peak serum concentration is reduced by 65% and the AUC (area under the curve) is reduced by 30%.
Best wishes all.
Two months of treatment at 4 mg weekly, three weeks on, one week off.
Never developed any significant peripheral neuropathy. However did develop acute gastritis. Prilosec (omeprazole) helped, but bloating continued.
Heart palpitations developed during second month of Ninlaro. After many tests, it was determined that my heart is both mechanically and electrically fine. The theory is that Ninlaro may have contributed to autonomic nervous system problem. Oncologist was uncomfortable continuing treatment. There appears to be very little that can be done other than wait and hope.
Three months after discontinuation of Ninlaro, heart palpitations still occur, but less severe.
Ninlaro is taken on an empty stomach and no food for an hour after taking pill. It creates a strong acid that causes the gastritis.
Eating a high calorie-high fat snack is not recommended. Medical reports indicate that the peak serum concentration is reduced by 65% and the AUC (area under the curve) is reduced by 30%.
Best wishes all.
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Ninlaro (ixazomib) - what to expect?
I'll also be following this thread and will post my experiences as I'm about to start Ninlaro along with 25 mg Revlimid and 40 mg dexamethasone. I had started on Revlimid / dex / Empliciti (elotuzumab) in February, but after a slight drop in my kappa light chains, they started to rise again, and the doctor feels I'm not getting any more benefit from it. He and the team at my hospital agreed that trying Ninlaro next would be sensible.
I'm a little concerned as I know Ninlaro is related to Velcade, and I had been on Velcade post-transplant, until it also stopped working. I asked my doctor about it and he said Ninlaro could still work, especially in combination with these other two drugs. So I guess I'll have to wait and see!
I'll be taking the Ninlaro and dex once a week and the Revlimid is a 21-days-on, 1 week off schedule. The Ninlaro is also once a week. I hope I can keep it all straight along with the other meds (Prilosec, acyclovir, aspirin, etc) I'm also taking.
The one thing I'm not looking forward to is that I'll be taking 40 mg of dex as opposed to the 20 mg I was taking before. But I want to give this the best shot at working and that's what the drug combination was tested at.
We're waiting for approval from my insurance company but I assume it will be fine since it's basically just substituting one expensive drug for another.
The nurse and pharmacist at the hospital suggested taking the Ninlaro when I first wake up in the morning, since I obviously will have been fasting while sleeping, and then can just wait the hour before having breakfast.
Wishing everyone much success on this new drug! I am grateful that I have so many options.
I'm a little concerned as I know Ninlaro is related to Velcade, and I had been on Velcade post-transplant, until it also stopped working. I asked my doctor about it and he said Ninlaro could still work, especially in combination with these other two drugs. So I guess I'll have to wait and see!
I'll be taking the Ninlaro and dex once a week and the Revlimid is a 21-days-on, 1 week off schedule. The Ninlaro is also once a week. I hope I can keep it all straight along with the other meds (Prilosec, acyclovir, aspirin, etc) I'm also taking.
The one thing I'm not looking forward to is that I'll be taking 40 mg of dex as opposed to the 20 mg I was taking before. But I want to give this the best shot at working and that's what the drug combination was tested at.
We're waiting for approval from my insurance company but I assume it will be fine since it's basically just substituting one expensive drug for another.
The nurse and pharmacist at the hospital suggested taking the Ninlaro when I first wake up in the morning, since I obviously will have been fasting while sleeping, and then can just wait the hour before having breakfast.
Wishing everyone much success on this new drug! I am grateful that I have so many options.
-
Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Ninlaro (ixazomib) - what to expect?
Hi all,
My husband is relapsing, and one of the drugs we have discussed adding to the mix is Ninlaro. I was wondering whether any previous posters here have any follow-up on the side effects and effectiveness of Ninlaro.
Thank you!
Laurie
My husband is relapsing, and one of the drugs we have discussed adding to the mix is Ninlaro. I was wondering whether any previous posters here have any follow-up on the side effects and effectiveness of Ninlaro.
Thank you!
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Ninlaro (ixazomib) - what to expect?
Hello Iwem,
I take Zofran (ondansetron) if I take Ninlaro during the day, but it may not be needed if you take Ninlaro at night when you can sleep off the nausea at the time you take the pill. The only side effect I have is a photosensitive face during the day and not at night (which feels like a sunburn), and I am especially sensitive to sunlight. I only have minor gastrointestinal affects and no peripheral neuropathy.
The time you take the Ninlaro pill is important. The max Ninlaro concentration in the blood stream is 1 hour after the pill, with best result if you avoid high-fat meals 1 hour before or 2 hours after taking Ninlaro. I read that the max peak concentration of dex in the blood stream is about 1 hour after the pill and 4 -6 hours later to feel the effects in the muscles tissue. So best efficacy for zapping myeloma cells in the blood is at the maximum dex and Ninlaro concentration, I take dex in the morning with a small low fat breakfast and then the Ninlaro and Zofran pills 2 hours later.
My myeloma type is lambda 4-14, so proteasome inhibitors like Velcade and Ninlaro brought me into remission without having a stem cell transplant after a 1 year regimen of a Velcade, cyclophosphamide, and dexamethasone (VCD) and then a 1 year regimen of 3 mg Ninlaro and 20 mg dexamethasone.
Kappa light chain, free - 7 mg/L (out of 3-19 mg/L)
Lambda light chain, free - 13 mg/L (out of 6-26 mg/L)
Kappa/lambda free ratio - 0.5 (out of 0.3-1.7)
M-spike = 0
Plasma cell count (PCC) less then 2% of blood per bone marrow biopsy
I tried taking a 2.3 mg Ninlaro for a few months, but when I accidentally missed 2 weeks of Ninlaro maintenance, my bone pain level shot up in areas of my body that had lesions (ribs, spine and hip), so I realized that I was at a marginal dose, and I went onto a new trial maintenance program of taking 3 mg Ninlaro and 4 mg of dex on alternating weeks (1 week on and then 1 week off since Ninlaro has a half life of 9.5 days).
I take Zofran (ondansetron) if I take Ninlaro during the day, but it may not be needed if you take Ninlaro at night when you can sleep off the nausea at the time you take the pill. The only side effect I have is a photosensitive face during the day and not at night (which feels like a sunburn), and I am especially sensitive to sunlight. I only have minor gastrointestinal affects and no peripheral neuropathy.
The time you take the Ninlaro pill is important. The max Ninlaro concentration in the blood stream is 1 hour after the pill, with best result if you avoid high-fat meals 1 hour before or 2 hours after taking Ninlaro. I read that the max peak concentration of dex in the blood stream is about 1 hour after the pill and 4 -6 hours later to feel the effects in the muscles tissue. So best efficacy for zapping myeloma cells in the blood is at the maximum dex and Ninlaro concentration, I take dex in the morning with a small low fat breakfast and then the Ninlaro and Zofran pills 2 hours later.
My myeloma type is lambda 4-14, so proteasome inhibitors like Velcade and Ninlaro brought me into remission without having a stem cell transplant after a 1 year regimen of a Velcade, cyclophosphamide, and dexamethasone (VCD) and then a 1 year regimen of 3 mg Ninlaro and 20 mg dexamethasone.
Kappa light chain, free - 7 mg/L (out of 3-19 mg/L)
Lambda light chain, free - 13 mg/L (out of 6-26 mg/L)
Kappa/lambda free ratio - 0.5 (out of 0.3-1.7)
M-spike = 0
Plasma cell count (PCC) less then 2% of blood per bone marrow biopsy
I tried taking a 2.3 mg Ninlaro for a few months, but when I accidentally missed 2 weeks of Ninlaro maintenance, my bone pain level shot up in areas of my body that had lesions (ribs, spine and hip), so I realized that I was at a marginal dose, and I went onto a new trial maintenance program of taking 3 mg Ninlaro and 4 mg of dex on alternating weeks (1 week on and then 1 week off since Ninlaro has a half life of 9.5 days).
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Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: Ninlaro (ixazomib) - what to expect?
Thank you for your reply Bob D. This is very informative and helpful and I will save this for future reference!
Laurie
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Ninlaro (ixazomib) - what to expect?
Worse myeloma treatment I had ever taken. Side effects were horrible. Doctor took me off of it after 1.5 months. Wasn't working anyways. Now on Kyprolis and dex.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Ninlaro (ixazomib) - what to expect?
Everyone has different reactions to any medicine and I have learned over the years not to generalize.
I have been taking Ninlaro 4 mg (alone – no dexamethasone or other multiple myeloma drugs) for almost a year now with absolutely no side effects.
I have been taking Ninlaro 4 mg (alone – no dexamethasone or other multiple myeloma drugs) for almost a year now with absolutely no side effects.
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Eddie - Name: Eddie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 42
Re: Ninlaro (ixazomib) - what to expect?
I too have been on Ninlaro for 5 cycles now without dex and Revlimid for maintenance. Had an autologous stem cell transplant (ASCT) in July of 2016 and reached a stringent complete response (sCR) in November (finally). So far so good, a little bit of nausea but otherwise fine. I hope it continues to work for me. LP
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
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