Are You Or Were In Ninlaro Or Ixazomib? | MyMyelomaTeam

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Are You Or Were In Ninlaro Or Ixazomib?
A MyMyelomaTeam Member asked a question 💭

I would like to learn: who has or had been treated with “Ninlaro or Ixazomib”, Proteasome inhibitor. Symptoms, side effects, did you improve? How long? How are you feeling? (before, during after?

posted October 23, 2023
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A MyMyelomaTeam Member

Proteasome inhibitor. Ninlaro (ixazomib) better on you.
And with this Proteasome inhibitor Kyprolis (carfilzomib) proteasome inhibitor got little worse. Thanks for your sharing.

posted October 23, 2023
A MyMyelomaTeam Member

I’ve been on Ninlaro since last July. I originally started on Velcade in 2018, with horrible neuropathy, hands, feet, and around my body mid section. My oncologist switched me to Kyprolis. The neuropathy around my mid section and hands disappeared. I still had neuropathy in feet, which got a little worse with the Kyprolis. On the Ninlaro my side effects seem to be a bit better. Less diarrhea, and fatigue. I noticed, if I stay active, I get over the side effects faster.

posted October 23, 2023
A MyMyelomaTeam Member

How are you feeling? How many sessions? And your numbers or criteria to follow up if improving or getting worse? What type of myeloma you are? When did you start the prescription?

posted October 23, 2023
A MyMyelomaTeam Member

I was on Ninlaro at the beginning of my Maintenace treatment (out of pocket max had been met). I switched to Velcade injections Jan2023 due to cost- $150 vs. $3000 per four week treatment cycle. I preferred Ninlaro due to freedom to travel & no itchy rash at injection site.

posted October 23, 2023
A MyMyelomaTeam Member

I took Ninlaro for a little while instead of Velcade. It was only because it is a pill, and I wouldn't have to be out and about during COVID. It made me nauseous the day I took it, so I eventually went back to the Velcade injection. I had picked Saturdays as the day to take it on, which was probably a mistake. If I had weekend company staying with us, it was hard on me.

posted October 23, 2023

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