NALIRI(FOX): What side effects are you experiencing?

I only lasted 3 cycles on Naliri before I gave up and got into a trial, but I didn't experience any of those. I also didn't experience diarrhea as so many do.

However, I did experience substantially worse reflux, vomiting, and fatigue with Naliri than I did on either Folfirinox or Gem+Abrax+Cis. We now know that tumor tissue clogging up my gastric outlet stent was a huge factor in that.

I hope you get your side effects under control soon!

--mm

I'm tagging fellow members like @lvtexas @starr500 @joannc63 @margaretpaluch @shivany @rosebella, who I believe have experience with NALIRI or NALIRIFOX and who can share the side effects they experienced and tips for managing them.

@gamaryanne, how are you doing? How often are your treatments?

My husband had 4 cycles of Nalirifox. He had unrelenting diarrhea and was in a continuous cycle of imodium alternating with lomotil. This was very challenging. We added regular twice weekly hydration outside of infusion day (in addition to infusion days). He never lost his appetite & had some fatigue, but not too bad. He had an infusion reaction to Irinotecan in the 4th cycle. They had to stop that regimen.

He then had a 'wash-out period ' of a couple weeks & started Gemcitabine & Abraxane. He did ok, however his BP bottomed out (emergency situation while we were at the hospital for labwork - 78/56) after the first infusion of the new regimen. He was admitted to ICU & did well. Then he was on Gemcitabine without Abraxane for 2 cycles. Yesterday they added Abraxane back. During all these Cycles & complications his CT scans have showed no spread and some decreased tumor size in pancreas. He has more fatigue on this regimen, but less diarrhea. His appetite is great. I suspect he may have a hit to his WBCs, Platelets etc which may delay next chemo.

@colleenyoung
I am still on it. They coupled the last infusion with a Neulasta shot-i felt awful the nezt 24 hours. Then revounded by day 6.
For those having nausea and vomiting, pls ask for better pre-meds. Ateopine is one that i get and i have never experienced vomiting. The diarrhea is real; i try to counteract it with a bit of cheese and solid food. On day 7 now-mouth sweats are gone but still have dry mouth . I counteract that vy swishing with orange juice or chick fil a lemonade! Tastes good and wakes up my mouth!
The combo of SBRT and Naliri have brought my ca19-9 down to 123 this week. Still some pain in my side occasionally. I am now taking a month of Naliri to have my umbilical hernia repaired. Hoping this is not a poor decision.

Doing it because i had an ER run due to pain. They said time to fix before anymore travel. Trip to Montaerrat planned foe end of January so i am taking their advice praying it doesnt cause my body to grow yet another tumor.

Hey @gamaryanne .
My father started in Nalirifox as first line of treatment ( he was diagnosed with tumor in the body of pancreas, which made him impossible candidate for surgery, anyhow). He had 5 rounds of Nalirifox at 15 days gap.
1st chemo ( his diahhrea started after 5 days - continued for 4-5days ) then stabalised.
2nd chemo with 10% reduced dozed because of diahhrea ( his diahhrea started 3 days after- continued intensely for 4-5 days )
3rd chemo - reduced more 10% ( his diahhrea started 6 days after - his pain was increasing but since he was taking morphine now each 6 hours along with dolo and meftalspasm- he was still ablet o get through it )
4th chemo - delayed by a 4-5 days because his diahhrea was there till the date of chemo and weakness was prominent and there was festival in India, lack of medical staff etc ) - Diahhrea was better, had 3-4 days but not too much, the main problem that started after 4th chemo was his continuous pain, heaviness in stomach, bloated, in pain. Nausea had increased , this was happening post 3rd chemos only so we had started giving him anti nausea before every meal.
We waited in the next gen sequencing report because we were anxious, there were no physical signs of improvement like decrease in pain or anything but dad being dad was always like, yes I am fine. Ah !
Then came the 5th chemo - he was getting weak and was almost high on morphine and the pain patch. ( More nausea and pain. Diahrea started after 5-6 days but was on and off. It was if diahhrea is there, he will be intensely weak, take medicines to control it and then start feeling constipated and heavy and not willing to eat ) In the entire duration his diet was good. The chemo drugs did take a toll on his health, but his weight dropped from 63-64 to 60kg. Post 5th chemo we did pet ct and found that the cancer has progressed and the GGT was disrupted. We decided we will not go ahead with chemo anymore. At the same time, we found in the next gen sequencing report that the main driver of his tumor was a generic fusion called capza2met. And the other genes were chemo resistant ( like the chemo drug might be effective for some time but after a point they would become resistant to the chemo drugs ). So as of now we have opted out of chemo entirely. My dad got a procedure done called celiac neurolysis ( nerve block ) to block the pain he felt because of tumor, ERCP ( bile duct stent) and they had also found a cyst in his pancreas which was pressing the nerves intensifying the pain , that was drained. Post all this he started having fever spike after 4 days. At present he is hospitalized because of the infection that has been caused due to the procedure . Doctor says it's treatable and he will recover but it ll be slow recovery as his body is already weak. Once he is out of all this. The plan ahead is to start the Crizotinib ( oral target medicine ) which is for the capza2met fusion that has found in his NEXT GEN SEQUENCING REPORT. Fingers crossed this seems to be one of the positive things we can look forward to in my dad's case. And I am positive so far that it will work by stoping the growth and best case scenario it might also help shrink the tumors if the body is able to take it well.
I guess what I have learnt is that every individual reacts differently to the same drug. Nalirifox was something we were very positive with but it kind of backfired, because the main driver of his tumor was this capza2met probably. Hoping this will work out best for him . Sending you all the strength and prayers to get through it and come out strong ❤️

@shivany thank you for your reply. Yes indeed, we all react differently!
Can you pls tell me the name of the NexGen test your doctor ordered? I have not heard of the mutation you are speaking of.

I think it's called next gen sequencing (NGS) test only.
This is an entire cancer panel test that helps detect broader range of genomic mutation. I think they might also call it genome sequencing test. which is different than BRCA1 And 2.