I’m six years post stem cell transplant. I was on a Revlimid and dexamethasone maintenance until two weeks ago. We started a new program that included Ninlaro (ixazomib). I’ve got the IgA form and my IgA went up above 2400, and my paraprotein went up in kind. I’m two doses into the Ninlaro and so far so good. No lab results yet.
I’ve read the material that comes with Ninlaro.
I’m wondering what to expect with this combination or medications.
Thanks in advance.
Forums
9 posts
• Page 1 of 1
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
Hi Chip,
Erik was four and a half years past transplant when he relapsed and went on Ninlaro, Revlimid, and dexamethasone. He did very well on it, with only the predictable side affects. Having said that, he did have to have his gallbladder removed, and had a torn retina that everyone assured us was not related to the treatment. But he did have to stop treatment several times. All in all he was on Ninlaro-Revlimid-dex for about 8 months until his M-spike plateaued at 0.2 g/dL. Since then he's been on Revlimid maintenance and his M-spike is 0 and his light chains are continuing to fall.
His biggest complaint with all of this has been the tiredness / lack of energy from the Revlimid. He's on a 3 week on / one week off schedule, and by the end of the third week he is dragging. He has also been getting leg cramps, but bananas seem to help keep them at bay.
Good luck!
Lyn
Erik was four and a half years past transplant when he relapsed and went on Ninlaro, Revlimid, and dexamethasone. He did very well on it, with only the predictable side affects. Having said that, he did have to have his gallbladder removed, and had a torn retina that everyone assured us was not related to the treatment. But he did have to stop treatment several times. All in all he was on Ninlaro-Revlimid-dex for about 8 months until his M-spike plateaued at 0.2 g/dL. Since then he's been on Revlimid maintenance and his M-spike is 0 and his light chains are continuing to fall.
His biggest complaint with all of this has been the tiredness / lack of energy from the Revlimid. He's on a 3 week on / one week off schedule, and by the end of the third week he is dragging. He has also been getting leg cramps, but bananas seem to help keep them at bay.
Good luck!
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
Lyn,
I found a great preventative for leg and foot cramps. At least it works for me, so it might do the job for others. About 3 nights a week I have a tall glass of tonic water over ice with a healthy shot of vodka and a big squeeze of lime. You probably wouldn't need the anything but the tonic water but the vodka doesn't seem to hurt anything and is not contraindicated with any of my medicines. It really amounts to a low dose of quinine.
Charlie
I found a great preventative for leg and foot cramps. At least it works for me, so it might do the job for others. About 3 nights a week I have a tall glass of tonic water over ice with a healthy shot of vodka and a big squeeze of lime. You probably wouldn't need the anything but the tonic water but the vodka doesn't seem to hurt anything and is not contraindicated with any of my medicines. It really amounts to a low dose of quinine.
Charlie
-
Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
Hi Charlie,
Thanks for the suggestion. We tried that and EJ is one of those people who get headaches from quinine! He was really disappointed because it was helping. Now, maybe if we tried it with the vodka ...
Lyn
Thanks for the suggestion. We tried that and EJ is one of those people who get headaches from quinine! He was really disappointed because it was helping. Now, maybe if we tried it with the vodka ...
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
I am in a Revlimid, Ninlaro (ixazomib), and dexamethasone trial for smoldering multiple myeloma, which I was diagnosed with in October 2017. I began the trial in December 2017. I did have a lot of side effects and had to go on disability for the time of the trial, but to me it is worth it. I started out with an M-spike of 4.26 g/dL (42.6 g/l) and after 9 cycles my test results come back as no M-spike detected.
I just went through my stem cell harvesting to bank cells in case I ever need them and at the end of September I will start Cycle 10.
I am interested to know more about the possible side effects of the Ninlaro, Revlimid, and dexamethasone treatment combination.
I just went through my stem cell harvesting to bank cells in case I ever need them and at the end of September I will start Cycle 10.
I am interested to know more about the possible side effects of the Ninlaro, Revlimid, and dexamethasone treatment combination.
-
3148mb - Name: Melissa
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 40
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
Hi Melissa,
What sort of side effects did you have while you were on Ninlaro, Revlimid, and dexamethasone that you had to go on disability?
As you probably know, Revlimid is a very common treatment for myeloma patients, both newly diagnosed and relapsed. Ninlaro is a newer drug that works similarly to Velcade and Kyprolis, which are two other "proteasome inhibitor" drugs.
Check out this post for links to forum threads about Revlimid, Ninlaro, and lots of other myeloma treatments. (The post always can be found at the top of the "Treatments & Side Effects" section of the forum.)
This link for Ninlaro (which is in the above post) pulls up almost 30 Ninlaro-related discussions. Some of them have important information you probably want to know about.
What sort of side effects did you have while you were on Ninlaro, Revlimid, and dexamethasone that you had to go on disability?
As you probably know, Revlimid is a very common treatment for myeloma patients, both newly diagnosed and relapsed. Ninlaro is a newer drug that works similarly to Velcade and Kyprolis, which are two other "proteasome inhibitor" drugs.
Check out this post for links to forum threads about Revlimid, Ninlaro, and lots of other myeloma treatments. (The post always can be found at the top of the "Treatments & Side Effects" section of the forum.)
This link for Ninlaro (which is in the above post) pulls up almost 30 Ninlaro-related discussions. Some of them have important information you probably want to know about.
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
I am currently in a clinical study comparing the response of Ninlaro + dexamethasone to Ninlaro + Revlimid + dexamethasone. I am in the Ninlaro + dex arm.
Previously, I have been in a trial of Kyrpolis + Revlimid + dexamethasone (2 years), maintenance with Revlimid + dexamethasone (3 years), and a trial of elotuzumab (Empliciti) + pomalidomide (Pomalyst) + dexamethasone (2 years).
Of all the treatments, I have found the side effects from the Ninlaro + dexamethasone to affect me the most. This is the first time I've had to deal with queasiness. In addition, the fatigue seems to be greater, my blood pressure is a bit erratic, my resting heart rate has increased, and the fourth day after treatment I feel wobbly (or perhaps I should attribute this to just getting old ??).
None of these are that severe, but they are things that I've not really had to deal with before and tend to wear a person down dealing with them week after week.
The good news (I suppose) is that it looks like I'm starting to relapse (after about 6 months), so I'll probably be moving on to something else in the next month or two and hopefully the side effects will be less.
Previously, I have been in a trial of Kyrpolis + Revlimid + dexamethasone (2 years), maintenance with Revlimid + dexamethasone (3 years), and a trial of elotuzumab (Empliciti) + pomalidomide (Pomalyst) + dexamethasone (2 years).
Of all the treatments, I have found the side effects from the Ninlaro + dexamethasone to affect me the most. This is the first time I've had to deal with queasiness. In addition, the fatigue seems to be greater, my blood pressure is a bit erratic, my resting heart rate has increased, and the fourth day after treatment I feel wobbly (or perhaps I should attribute this to just getting old ??).
None of these are that severe, but they are things that I've not really had to deal with before and tend to wear a person down dealing with them week after week.
The good news (I suppose) is that it looks like I'm starting to relapse (after about 6 months), so I'll probably be moving on to something else in the next month or two and hopefully the side effects will be less.
-
Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
I have been on this combination for five cycles, so here is my experience.
I am taking Revlimid 25 mg daily for 21 days out of 28, dexamethasone 40 mg weekly, and Ninlaro once a week for three weeks. I had a stem cell transplant about a year ago but relapsed pretty quickly so was put on this treatment in May 2018. So far, no real side effects to report and generally feeling very good to excellent.
I am cycling around 150 miles a week and about to recommence general training. I do lose a night’s sleep once a week, there are days I can be a little tired but not enough to stop me ‘living’, and my haemoglobin is stuck at 115 to 120. This low haemoglobin is the only adverse reading from my blood test (paraprotein apart!), but in fairness this has been the case for a couple of years. At the start of this phase my paraprotein was 1.5 g/dL (15 g/L) and is currently 0.2 g/dL (2.0 g/L).
I am encouraged that some people have been taking this treatment successfully for many cycles and pray I am going to be so lucky. My oncologist is planning to review the doses once the paraprotein has bottomed and stabilised, especially the dexamethasone.
I am taking Revlimid 25 mg daily for 21 days out of 28, dexamethasone 40 mg weekly, and Ninlaro once a week for three weeks. I had a stem cell transplant about a year ago but relapsed pretty quickly so was put on this treatment in May 2018. So far, no real side effects to report and generally feeling very good to excellent.
I am cycling around 150 miles a week and about to recommence general training. I do lose a night’s sleep once a week, there are days I can be a little tired but not enough to stop me ‘living’, and my haemoglobin is stuck at 115 to 120. This low haemoglobin is the only adverse reading from my blood test (paraprotein apart!), but in fairness this has been the case for a couple of years. At the start of this phase my paraprotein was 1.5 g/dL (15 g/L) and is currently 0.2 g/dL (2.0 g/L).
I am encouraged that some people have been taking this treatment successfully for many cycles and pray I am going to be so lucky. My oncologist is planning to review the doses once the paraprotein has bottomed and stabilised, especially the dexamethasone.
-
Rory - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Dec2015
- Age at diagnosis: 65
Re: Ninlaro, Revlimid & dexamethasone: what to expect?
I have been on Ninlaro as single-agent maintenance for one and one-half months.
I have suffered a lot of side effects - constipation, diarrhea, crushing fatigue, abdominal pain, chills, loss of appetite, weight loss, low platelet counts. Some of these were so bad that my oncologist reduced my dosage from 4 to 3 mgs. But that didn’t help and it looks like I’ll need to discontinue it.
I hope you have better luck with it.
I have suffered a lot of side effects - constipation, diarrhea, crushing fatigue, abdominal pain, chills, loss of appetite, weight loss, low platelet counts. Some of these were so bad that my oncologist reduced my dosage from 4 to 3 mgs. But that didn’t help and it looks like I’ll need to discontinue it.
I hope you have better luck with it.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
9 posts
• Page 1 of 1
Return to Treatments & Side Effects