[Castaway]

Ninlaro, Pomalyst, and dexamethasone

by Castaway on Sat Oct 22, 2016 8:34 am

Good early morning,

Yesterday was my dex day so I wake up early morning on the following day. Up at 2:00 am this morning so I started thinking about my new treatment. So here are a couple questions that I hope someone can answer.

One question is anyone has any insights into, or experience with, the three-drug regimen Ninlaro (ixazomib) in combination with Pomalyst and dex. I also read where a 3 combination which includes Ninlaro shows Revlimid and dex, not Pomalyst and dex.

My oncologist is suggesting Ninlaro along with my current Pomalyst and dex. I was getting weekly Velcade subQ. This sounds great as I won't have to go in weekly for the Velcade injections. All treatments will be in pill form at home. I will still be doing labs twice per month, along with my monthly oncologist visit which includes going over my lab results. Of course if any issues come up, I am able to get into his office at any time asap.

Last question is for anyone who has taken the Ninlaro, Pomalyst, and dex combination. How are you taking it? I did read in an article here on the Beacon from last year so I am not sure if this is still correct as in one year things can change. It said that Ninlaro should be taken on the same day as dex, and the week off from Pomalyst (or Revlimid) should be on the same week with Ninlaro. Is this still the same? Of course the dex will still be taken during that week off.

Thank you for any feedback,
Castaway

[Grizlump]

Re: Ninlaro, Pomalyst, and dexamethasone

by Grizlump on Sun Oct 23, 2016 10:00 am

I am just now finishing up my 4th cycle of Ninlaro, Pomalyst, and dexamethasone. I have been taking the dex on the same day as the Ninlaro. It has been the usual 3 weeks on and 1 week off schedule. Taking the pills instead of going in for treatment has been great for me since it is a 100 mile round trip for treatment. I see the doc and get blood work at the end of each cycle.

My kidney function is now the best it has been in over 2 years and my M-spike is down to 0.3 g/dL (3 g/l) from 1.9 g/dL four months ago when I started this series of treatments. Side effects have been minimal with a bit of stomach and gut upset, but nothing I can't handle and surely not as debilitating as I experienced when on Revlimid a couple of years back. Worst thing so far is sore mouth and numbing of my taste buds. I expect that to go away when I start on my break next week.

Doctor says we will take a couple months off and then go with a low maintenance dose for a while as long as the m-spike stays down. Of course, that will require regular blood work to keep an eye on things.

I am 70 years old and I am playing the quality of life vs. longer life game, so I am less inclined to take as much treatment as others may desire.

I just hope the little myeloma monsters have not gotten too smart and that this easy, pills only treatment works as well for me as the old Revlimid-Velcade-dex combo did in the past. If necessary, I can put up with this for ever.

I hope you have the same or better results.

Charlie (grouchy German)

[Castaway]

Re: Ninlaro, Pomalyst, and dexamethasone

by Castaway on Tue Oct 25, 2016 9:54 pm

Charlie,

Sorry I didn't reply sooner. My wife has several health issues herself and we were kept busy with that. Thank you for your experience with the Ninlaro. I printed out the calendar from the Ninlaro website. I think that will help a lot keeping track of the three drugs.

From what I have read, we can take the dex and Ninlaro on the same day, but not together. Also take the Pomalyst on the same day.

I am going to take the dex in the Morning with a little food as I always have. And was thinking of taking both the Pomalyst and Ninlaro 2 hours after dinner. I still have to run that by my oncologist.

Taking these drugs at home sounds great.

I am sure that it makes life a lot easier for you with that distance you have to go for doctor visits.

Best of luck to you,
Castaway