I was diagnosed February 2013 with multiple myeloma at 49 years old. I took Velcade and dex but it did not result in the decrease that my doctor wanted, so I went on 2 cycles of Revlimid and dex. I had a stem cell transplant July 2013 and have been "cancer free" until June 2015.
We watched the numbers and I started Revlimid in February 2016. It is not bringing my numbers down fast enough, so starting Monday I will start Revlimid, Ninlaro, and dex.
What sort of side effects can I expect from the Ninlaro?
Forums
Re: Ninlaro side effects?
Hi Juliep,
EJ just started on Ninlaro, Revlimid and dex in February. It's his first relapse since his transplant in 2011. He's had two rounds of treatments and has been experiencing some troubles, but none of it has been from the Ninlaro! He had an allergic reaction from the Bactrim (antibiotic), and a high-fever/possibly pneumonia from being run down. As a result he's not been able to get through the full three-weeks of treatment in each round.
The 25 mg of Revlimid is making him tired and fuzzy brained. He starts his third round of treatment next Monday, and if it's still as bad he's going to ask the doctor to lower his Revlimid dose.
Hope that helps. Good luck!
Lyn
EJ just started on Ninlaro, Revlimid and dex in February. It's his first relapse since his transplant in 2011. He's had two rounds of treatments and has been experiencing some troubles, but none of it has been from the Ninlaro! He had an allergic reaction from the Bactrim (antibiotic), and a high-fever/possibly pneumonia from being run down. As a result he's not been able to get through the full three-weeks of treatment in each round.
The 25 mg of Revlimid is making him tired and fuzzy brained. He starts his third round of treatment next Monday, and if it's still as bad he's going to ask the doctor to lower his Revlimid dose.
Hope that helps. Good luck!
Lyn
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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 side effects?
Thanks for the info. I just had my pre-chemo consult with the drug company this morning. Ninlaro is 3 pills, day 1, 8 and 15. It is $3000 per pill. I am so glad I have good insurance.
Wow, if I get any of the listed side effects from Ninlaro, I do not want it. I am really dreading Monday. I do not look forward to the chemo cocktail (Revlimid and Ninlaro) and the dex. Hate the dex! I will pre-apologize to my family for what I might say and how I might act under the influence of dex.
Wow, if I get any of the listed side effects from Ninlaro, I do not want it. I am really dreading Monday. I do not look forward to the chemo cocktail (Revlimid and Ninlaro) and the dex. Hate the dex! I will pre-apologize to my family for what I might say and how I might act under the influence of dex.
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Juliep
Re: Ninlaro side effects?
I have just finished my first month of Ninlaro, dex, and Revlimid.
Has anyone experienced depression while on this? The last week I have been ready to cry at anything.
Has anyone experienced depression while on this? The last week I have been ready to cry at anything.
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Bullheadjudith - Name: Bullheadjudith
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 73
Re: Ninlaro side effects?
Dex can have some pretty significant effects on moods. Some people here have noted that they can get extremely grouchy when "crashing" after the dex high, so maybe your depression is related to that?
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Ninlaro side effects?
Just finished my first month of Ninlaro, Rev, and dex. The first 2 weeks not too bad, but the 3rd week was quite a challenge. All said, the side effects for me were diarrhea, rash, watering eyes, fatigue, thrush. UTI and dizziness. Maybe a lower dose of Ninlaro would help. Hope this medication helps.
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brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Ninlaro side effects?
EJ has been having a lot of trouble since he started Ninlaro-Revlimid-dex. Most of it has not been due to these drugs, but from other complications!
As I stated above, during his first round he had an allergic reaction to the antibiotic they had given him that resulted in discontinuation of his treatment.
During the second round of treatment, he developed a high fever that had him in the hospital for a few days, which again resulted in discontinuation of his treatment. They couldn't find anything wrong with him, so they diagnosed him with pneumonia. I don't think this was correct given what happened next.
One week in to his third round of treatment, he had to have his gallbladder removed! I think the high fever was actually the start of this, but they had pumped him so full of fluids and antibiotics, it masked the problem. Anyway, he had surgery to remove his gallbladder and they discontinued treatment for six weeks to give him time to heal.
Now he is almost through his "fourth" round of treatment, and he developed a rash. No hives, just splotchy red on his upper arms, chest and neck. He took some Benadryl and it cleared up immediately.
My question is this - if you get a rash from a drug, do you have to lower the dose, or is it okay to stay where he is if the Benadryl controls it? EJ's had so much trouble staying on his treatment schedule, that he really doesn't want to alter it.
Thanks, your input would be appreciated.
Lyn
As I stated above, during his first round he had an allergic reaction to the antibiotic they had given him that resulted in discontinuation of his treatment.
During the second round of treatment, he developed a high fever that had him in the hospital for a few days, which again resulted in discontinuation of his treatment. They couldn't find anything wrong with him, so they diagnosed him with pneumonia. I don't think this was correct given what happened next.
One week in to his third round of treatment, he had to have his gallbladder removed! I think the high fever was actually the start of this, but they had pumped him so full of fluids and antibiotics, it masked the problem. Anyway, he had surgery to remove his gallbladder and they discontinued treatment for six weeks to give him time to heal.
Now he is almost through his "fourth" round of treatment, and he developed a rash. No hives, just splotchy red on his upper arms, chest and neck. He took some Benadryl and it cleared up immediately.
My question is this - if you get a rash from a drug, do you have to lower the dose, or is it okay to stay where he is if the Benadryl controls it? EJ's had so much trouble staying on his treatment schedule, that he really doesn't want to alter it.
Thanks, your input would be appreciated.
Lyn
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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 side effects?
I mentioned in a previous post my side effects, but just one round of Ninlaro, Revlimid, and dex brought my free light chains into normal range, my IgG lambda into normal range, and M-spike down to 0.38 g/dL (it was 0.56). So I will see if my initial high dose will be reduced.
Evidently, this Ninlaro is helping me.
Evidently, this Ninlaro is helping me.
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brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Ninlaro side effects?
This has been great to find and read.
Diagnosed 2009. Started this round of treatment March 2015. To me, it quickly became obvious that I had become or was becoming Revlimid refractory. I was on low-dose dex at the time. In January 2016, I went on high-dose dex and we saw a brief dip in the numbers followed by a continuous slow rise. I am one of the rare ones who enjoys the "up" of the steroids without any "down". It relieves my pain for a day or two giving me the chance to do more than I normally feel like doing.
This is day 8 on my first cycle with Ninlaro. I started last week after a very busy "rest" week. Day one, on the steroids was not a problem. Having been pre-treated with the steroid, I finished the activities of the busy week without a break. On day 2, the diarrhea set in and totally wiped me out. I had some Gatorade around along with some gluten-free soup.
I found out in 2015, that while taking Revlimid, I was sensitive to wheat and dairy with them causing rashes and facial swelling. I could eat them during my rest week but not while on Revlimid. I used Benadryl (diphenhydramine) and Zyrtec (cetirizine) to treat the rash and reactions and was able to remain on Revlimid 25 mg. I agree that we want to use the highest doses as long as possible.
I intend to do the same with the Ninlaro side effects. If I get rashy, I'll avoid wheat and dairy and take some antihistamines. When I have the diarrhea, I'll go for Gatorade and Lomotil (diphenoxylate and atropine). I've been reading about Metamucil and Citrucel to thicken the stools as well. It's all "symptomatic treatment" to get us through and let us stay on the highest dose.
Good luck y'all.
Diagnosed 2009. Started this round of treatment March 2015. To me, it quickly became obvious that I had become or was becoming Revlimid refractory. I was on low-dose dex at the time. In January 2016, I went on high-dose dex and we saw a brief dip in the numbers followed by a continuous slow rise. I am one of the rare ones who enjoys the "up" of the steroids without any "down". It relieves my pain for a day or two giving me the chance to do more than I normally feel like doing.
This is day 8 on my first cycle with Ninlaro. I started last week after a very busy "rest" week. Day one, on the steroids was not a problem. Having been pre-treated with the steroid, I finished the activities of the busy week without a break. On day 2, the diarrhea set in and totally wiped me out. I had some Gatorade around along with some gluten-free soup.
I found out in 2015, that while taking Revlimid, I was sensitive to wheat and dairy with them causing rashes and facial swelling. I could eat them during my rest week but not while on Revlimid. I used Benadryl (diphenhydramine) and Zyrtec (cetirizine) to treat the rash and reactions and was able to remain on Revlimid 25 mg. I agree that we want to use the highest doses as long as possible.
I intend to do the same with the Ninlaro side effects. If I get rashy, I'll avoid wheat and dairy and take some antihistamines. When I have the diarrhea, I'll go for Gatorade and Lomotil (diphenoxylate and atropine). I've been reading about Metamucil and Citrucel to thicken the stools as well. It's all "symptomatic treatment" to get us through and let us stay on the highest dose.
Good luck y'all.
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GrannyLucy - Who do you know with myeloma?: myself
- When were you/they diagnosed?: spring 2009
- Age at diagnosis: 54
Re: Ninlaro side effects?
Hi everyone:
I was wondering how common it is to experience eye changes while taking Ninlaro (ixazomib).
I've been on Ninlaro (with Revlimid and dexamethasone) since last summer, and it's working pretty well for me, but over this last cycle I've noticed some blurriness of vision and dry eyes. I can deal with the dryness, but the blurriness is of concern. I'm seeing my doctor on Tuesday and will probably see the eye doctor as well, but I wondered if this is a common side effect and, if so, if it's necessary to stop taking Ninlaro as a result? Or does the condition get better?
I was also thinking that the eye issues could be stemming from the dexamethasone I'm also taking.
I know sometimes these side effects come and go so I don't want to panic, but I also don't want to mess around with my eyesight.
Thanks!
I was wondering how common it is to experience eye changes while taking Ninlaro (ixazomib).
I've been on Ninlaro (with Revlimid and dexamethasone) since last summer, and it's working pretty well for me, but over this last cycle I've noticed some blurriness of vision and dry eyes. I can deal with the dryness, but the blurriness is of concern. I'm seeing my doctor on Tuesday and will probably see the eye doctor as well, but I wondered if this is a common side effect and, if so, if it's necessary to stop taking Ninlaro as a result? Or does the condition get better?
I was also thinking that the eye issues could be stemming from the dexamethasone I'm also taking.
I know sometimes these side effects come and go so I don't want to panic, but I also don't want to mess around with my eyesight.
Thanks!
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
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