Forums
Ninlaro (ixazomib) - what to expect?
I may need to start treatment with Ninlaro (ixazomib) with Revlimid or Pomalyst and dexamethasone. So I'm curious what to expect in terms of efficacy and side effects.
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Ninlaro (ixazomib) - what to expect?
Hi,
I would also be interested to know if anyone else is taking Ninlaro and how you are doing?
My husband will be taking Ninlaro and Cytoxan, if Blue Cross will prior auth the Ninlaro. The pharmacy and oncologist are working on that, because it's supposed to be given with Revlimid and dex.
My husband was on 24 cycles of Kyprolis / Revlimid / dex from 2011-2013, then maintenance Revlimid and dex. His M-spike has steadily climbed over this past year, going from undetectable (was in stringent complete response) to 0.6 g/dl. Less than a month ago, he had several pulmonary embolisms in both lungs, in addition to a deep vein thrombosis (DVT). His fatigue from the Revlimid / dex and low hemoglobin had turned into exhaustion nearly all week – except for one dex "up" day each week. He has worsening neuropathy in both legs and now starting in his hands. So, taking Revlimid and dex with Ninlaro was not something he wanted to do. Kyprolis worked well before, but it contributed to his now long-term shortness of breath during exertion, so he was reluctant to use it again, at least for now.
I'm assuming that Blue Cross will prior auth this use for Ninlaro once they know all the details. If anyone else has used it yet, we'd love to hear your experience so far.
Best wishes,
Chris M.
I would also be interested to know if anyone else is taking Ninlaro and how you are doing?
My husband will be taking Ninlaro and Cytoxan, if Blue Cross will prior auth the Ninlaro. The pharmacy and oncologist are working on that, because it's supposed to be given with Revlimid and dex.
My husband was on 24 cycles of Kyprolis / Revlimid / dex from 2011-2013, then maintenance Revlimid and dex. His M-spike has steadily climbed over this past year, going from undetectable (was in stringent complete response) to 0.6 g/dl. Less than a month ago, he had several pulmonary embolisms in both lungs, in addition to a deep vein thrombosis (DVT). His fatigue from the Revlimid / dex and low hemoglobin had turned into exhaustion nearly all week – except for one dex "up" day each week. He has worsening neuropathy in both legs and now starting in his hands. So, taking Revlimid and dex with Ninlaro was not something he wanted to do. Kyprolis worked well before, but it contributed to his now long-term shortness of breath during exertion, so he was reluctant to use it again, at least for now.
I'm assuming that Blue Cross will prior auth this use for Ninlaro once they know all the details. If anyone else has used it yet, we'd love to hear your experience so far.
Best wishes,
Chris M.
-
Chris M
Re: Ninlaro (ixazomib) - what to expect?
Hi Melpen,
How are you doing on Ninlaro? It took a few days for our insurance, BCBS, to authorize it, but they finally did. My husband will start taking his Ninlaro and Cytoxan on Monday.
Best wishes,
Chris M.
How are you doing on Ninlaro? It took a few days for our insurance, BCBS, to authorize it, but they finally did. My husband will start taking his Ninlaro and Cytoxan on Monday.
Best wishes,
Chris M.
-
Chris M
Re: Ninlaro (ixazomib) - what to expect?
I'd like to follow this discussion.
I've taken two doses so far. This is in a clinical trial for maintenance after a stem cell transplant.
I will take one pill once a week for 3 weeks with one week off. Then repeat the second month.
The third and fourth month will be Revlimid 10 mg daily.
Then continue alternating ixazomib and Revlimid.
So far I don't think I've had any side effects, Maybe very slight nausea upon waking up after taking it the evening before.
It is a bit of a pain to take it on an empty stomach – waiting 2 hours after eating and waiting another hour after.
I've taken two doses so far. This is in a clinical trial for maintenance after a stem cell transplant.
I will take one pill once a week for 3 weeks with one week off. Then repeat the second month.
The third and fourth month will be Revlimid 10 mg daily.
Then continue alternating ixazomib and Revlimid.
So far I don't think I've had any side effects, Maybe very slight nausea upon waking up after taking it the evening before.
It is a bit of a pain to take it on an empty stomach – waiting 2 hours after eating and waiting another hour after.
-
heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
Re: Ninlaro (ixazomib) - what to expect?
I started treatment with Ninlaro (3 mg weekly) in January of 2016. Happy to report no major side effects and much nicer than twice weekly Velcade shots. Over the next week tests should show whether the new drug has been as effective as expected.
-
Brian R Strickler - Name: Brian R Strickler
- Who do you know with myeloma?: Self
- Age at diagnosis: 52
Re: Ninlaro (ixazomib) - what to expect?
EJ just started his first round of Ninlaro / Revlimid / dex a week ago. He took his second pill yesterday. He's feeling a lot of tingling in his arms and feet, and he's had a little bit of trouble with exhaustion. I think a lot of this is due to the fact that this is his first relapse and he hasn't been on any treatment for 4-1/2 years (he didn't do maintenance after his stem cell transplant).
I'm hoping that some of this – especially the tingling – goes away after his body gets acclimated to it. The doctor assured him that the tingling is probably not peripheral neuropathy. I keep trying to convince him it's all the bad cancer cells dying!
Lyn
I'm hoping that some of this – especially the tingling – goes away after his body gets acclimated to it. The doctor assured him that the tingling is probably not peripheral neuropathy. I keep trying to convince him it's all the bad cancer cells dying!
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 (ixazomib) - what to expect?
I do not have direct experience with Ninlaro. However, I've been told by a myeloma specialist that it can cause peripheral neuropathy, just like Velcade does. He explained that they work in a very similar way. Kyprolis, while it is also a proteasome inhibitor, works in a slightly different way, which reduces the likelihood of peripheral neuropathy.
So, Christa's Mom, please make sure EJ lets his doctor know quickly if the tingling gets worse or if he starts to feel any numbness.
Mike
So, Christa's Mom, please make sure EJ lets his doctor know quickly if the tingling gets worse or if he starts to feel any numbness.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Ninlaro (ixazomib) - what to expect?
Hi Mike,
Thanks for your input! We are aware that Ninlaro can cause peripheral neuropathy. However, the tingling came on very fast (within 2 hours) of his taking his first pill, and in somewhat atypical places - balls of the feet, forearms, and face. Since the first week it has subsided.
But we/he is very concerned about peripheral neuropathy and keeping a close eye out for it!
Lyn
Thanks for your input! We are aware that Ninlaro can cause peripheral neuropathy. However, the tingling came on very fast (within 2 hours) of his taking his first pill, and in somewhat atypical places - balls of the feet, forearms, and face. Since the first week it has subsided.
But we/he is very concerned about peripheral neuropathy and keeping a close eye out for it!
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 (ixazomib) - what to expect?
I'm in the middle of the second round of Ninlaro following unsuccessful stem cell transplant in October.
Side effects:
About the feeling in the bottom of the feet, that is called palmar-plantar syndrome (there is a long medical name for it, but way too long). It feels like you're walking on smooth river rocks, but it can be painful. I developed a minor case of this during 3 rounds of CyBorD (cyclophosphamide, Velcade, dex) and 3 rounds of VRD (Velcade, Revlimid, dex). After VRD-PACE (NASTY), the pain was so intense that I could not stand on hardwood floor. The pain subsided after the transplant but plateaued. Now on Ninlaro, the discomfort has decreased. Go figure.
Hope this info helps.
Faith over Fear.
Side effects:
- Very minor loss of sensation in finger tips, but no pain at all.
- Chest heaviness, slight dizziness; went to ER last week for it.
- Indigestion but no feeling of nausea.
About the feeling in the bottom of the feet, that is called palmar-plantar syndrome (there is a long medical name for it, but way too long). It feels like you're walking on smooth river rocks, but it can be painful. I developed a minor case of this during 3 rounds of CyBorD (cyclophosphamide, Velcade, dex) and 3 rounds of VRD (Velcade, Revlimid, dex). After VRD-PACE (NASTY), the pain was so intense that I could not stand on hardwood floor. The pain subsided after the transplant but plateaued. Now on Ninlaro, the discomfort has decreased. Go figure.
Hope this info helps.
Faith over Fear.
-
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?
Thanks FaithoverFear!
A few days after my last post, EJ broke out in a rash that eventually encompassed his whole body! We think he had a reaction to Bactrim - the antibiotic he was on. The rash cleared up fairly quickly, and he hasn't had too many problems with tingling or odd sensations since then. We think he might have been feeling the allergic reaction coming on.
I did read up on palmar-plantar syndrome. Thanks for the info.
Lyn
A few days after my last post, EJ broke out in a rash that eventually encompassed his whole body! We think he had a reaction to Bactrim - the antibiotic he was on. The rash cleared up fairly quickly, and he hasn't had too many problems with tingling or odd sensations since then. We think he might have been feeling the allergic reaction coming on.
I did read up on palmar-plantar syndrome. Thanks for the info.
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
29 posts
• Page 1 of 3 • 1, 2, 3
Return to Treatments & Side Effects