I started to get rapid heart beats and flutter-like symptoms during the second cycle of Ninlaro. I'm off Ninlaro now for the next two cycles and hoping those symptoms go away. These symptoms wake me up five times a night, hard to get a good night sleep this way.
Can anyone further along with Ninlaro provide any perspective?
Does it go away?
Does it get better or is it permanent?
Anything makes it less?
Other than that, Ninlaro is very well tolerated; very minimal peripheral neuropathy, a bit of fatigue, WBC down a bit.
I'd be very happy if I could just sleep well at night (not on dex, just Ninlaro).
Let yourself be happy.
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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) and heart issues
I'm starting month number 4 of treatment with Ninlaro. So far, there have been very few if any side effects. During the last 2 or 3 weeks I have noticed a bit of neuropathy, very mild when compared to Velcade.
I've not felt anything like the rapid heart beat that you described.
I've not felt anything like the rapid heart beat that you described.
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Brian R Strickler - Name: Brian R Strickler
- Who do you know with myeloma?: Self
- Age at diagnosis: 52
Re: Ninlaro (ixazomib) and heart issues
Hi Faithoverfear,
You mention that you're having a little trouble with fatigue on Ninlaro. Have you been drinking more coffee to counteract it? If so, that could be the cause of your heart palpitations. I recently had to give up coffee due to heart palpitations. I can handle one cup every once and a while, but more than that, and my heart starts to flutter.
Lyn
You mention that you're having a little trouble with fatigue on Ninlaro. Have you been drinking more coffee to counteract it? If so, that could be the cause of your heart palpitations. I recently had to give up coffee due to heart palpitations. I can handle one cup every once and a while, but more than that, and my heart starts to flutter.
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 (ixazomib) and heart issues
Crista's Mom,
Thanks for asking. No caffeinated beverages for probably four years. That's not it. I do take Bactrim (sulfamethoxazole and trimethoprim) and acyclovir. I've noticed that they contribute to fatigue. My diet is super healthy; lots of fruit and veggies, lean meat, minimal starches.
I'm getting testosterone testing in a few days; I might learn something there. Also testing ferritin level. I will post results.
Thanks for asking. No caffeinated beverages for probably four years. That's not it. I do take Bactrim (sulfamethoxazole and trimethoprim) and acyclovir. I've noticed that they contribute to fatigue. My diet is super healthy; lots of fruit and veggies, lean meat, minimal starches.
I'm getting testosterone testing in a few days; I might learn something there. Also testing ferritin level. I will post results.
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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) and heart issues
Lyn,
You're having fatigue with Ninlaro. Even with really healthy eating habits. Same here. Also started to get racing heart and palpitations at night.
A friend suggested a ferritin test, which the doctor readily agreed to. Ferritin levels were half of the minimum reference level. Oncologist put me on ferrous sulfate 325 mg twice per day. Energy level shot up dramatically in about four days.
I've read that iron supplements can increase cancer cell division and affect proteasome inhibitors like Velcade and Ninlaro.
As always, please check with your oncologist before making any changes.
Hope this helps. Please let us know.
Hope over Fear
You're having fatigue with Ninlaro. Even with really healthy eating habits. Same here. Also started to get racing heart and palpitations at night.
A friend suggested a ferritin test, which the doctor readily agreed to. Ferritin levels were half of the minimum reference level. Oncologist put me on ferrous sulfate 325 mg twice per day. Energy level shot up dramatically in about four days.
I've read that iron supplements can increase cancer cell division and affect proteasome inhibitors like Velcade and Ninlaro.
As always, please check with your oncologist before making any changes.
Hope this helps. Please let us know.
Hope over Fear
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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) and heart issues
Follow-up : Heart discomfort was NOT related to Ninlaro.
GI doc found SIBO : small intestine bacteria overgrowth.
After transplant, my autonomic nervous system was (for lack of a better word) bent out of shape. One part of the ANS controls the action of the small intestine. When the small intestine is "slow", excessive bacteria can build up. It feels like bloating, heart discomfort, and shortness of breath.
DEEP belching provides short term relief. Swallow air and belch repeatedly to get the deep belch. Boys learn how to do this in grade school along with making armpit noise.
Normal protocol for heartburn is something to reduce acid production. But stomach acid is needed to control bacteria. Acid reducers make the condition worse ... not better. GI doc prescribed rifaximin, an antibiotic, to eliminate bacterial overgrowth. Additionally, will see dietitian to change diet following FODMAP principles.
Other symptoms of SIBO include malnutrition, low iron, low B12, ...
Once the serum IgA recovers, the problem should go away. IgA is the part of the immune system that protects the mucus membranes.
What a relief it is!
GI doc found SIBO : small intestine bacteria overgrowth.
After transplant, my autonomic nervous system was (for lack of a better word) bent out of shape. One part of the ANS controls the action of the small intestine. When the small intestine is "slow", excessive bacteria can build up. It feels like bloating, heart discomfort, and shortness of breath.
DEEP belching provides short term relief. Swallow air and belch repeatedly to get the deep belch. Boys learn how to do this in grade school along with making armpit noise.
Normal protocol for heartburn is something to reduce acid production. But stomach acid is needed to control bacteria. Acid reducers make the condition worse ... not better. GI doc prescribed rifaximin, an antibiotic, to eliminate bacterial overgrowth. Additionally, will see dietitian to change diet following FODMAP principles.
Other symptoms of SIBO include malnutrition, low iron, low B12, ...
Once the serum IgA recovers, the problem should go away. IgA is the part of the immune system that protects the mucus membranes.
What a relief it is!
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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) and heart issues
Hi Faith:
Just a brief editorial comment. This reads like an article in one of the "official" scientific publications. Very, very informative on the specific topic / issue on the side effect of Ninlaro. Thank you very much for this very informative posting. Regards,
Just a brief editorial comment. This reads like an article in one of the "official" scientific publications. Very, very informative on the specific topic / issue on the side effect of Ninlaro. Thank you very much for this very informative posting. Regards,
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JPC - Name: JPC
7 posts
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