[Rick B]

Length of remission with Ninlaro (ixazomib) maintenance?

by Rick B on Thu Aug 01, 2019 9:59 pm

Hi,

I've been on Ninlaro (2.3 mg) 3 weeks on, 1 week off, for 2 years and 3 months after an allogeneic (donor) stem cell transplant. Usually I experience 1 crappy day and then it's back to my normal. Maybe the second and third weeks are a little worse.

I'm in complete remission, so no real complaints, I've been making the most of my second chance. I have graft-versus-host-disease (GVHD) manifesting itself in my skin, eyes, and gut, for which I take medications.

My transplant doctor suggests that I keep up with the Ninlaro as long as it's working. I'm just wondering how long should I expect this will last. What sort of time to relapse should I expect while on the Ninlaro maintenance therapy?

Thanks for any insights,
Rick B.

[Kebo]

Re: Length of remission with Ninlaro (ixazomib) maintenance?

by Kebo on Thu Aug 08, 2019 3:32 pm

I've been on Ninlaro for about 4 months. It worked great with my IgA and free light chain results. My M-spike has maintained at 0.2 for past 3 months, but I'm seeing some creeping up in free light chain results and IgA, nothing major, but looks like the downturn has slightly reversed.

[stefania888]

Re: Length of remission with Ninlaro (ixazomib) maintenance?

by stefania888 on Sun Sep 08, 2019 11:12 pm

I was on Ninlaro, Pomalyst, and dex a couple of years ago. I got about a year out of that cocktail until my disease came back rather aggressively. It's a shame because the all-oral method was so convenient, and I had probably the best quality of life on it.

Wishing you the best!

Stephanie

[Grizlump]

Re: Length of remission with Ninlaro (ixazomib) maintenance?

by Grizlump on Mon Sep 09, 2019 11:50 am

Stephanie,

I did the same regimen for 6 cycles and then took a few months off. It did knock the numbers down, but the side effects were getting to me. Sore mouth and dead taste buds.

Now I am starting Pomalyst, dex, and Darzalex in a couple of weeks. I am not looking forward to the infusion since I got by taking pills for 5 years. I am apprehensive about the side effects of Darzalex too. Time will tell.

Charlie