Anyone had Abrax removed from the Gem/Abrax combo?

I do have neuropathy from that combo and they have offered to reduce dose or remove the abraxane. I told them no to keep going full speed ahead. My neuropathy eases by the end of week 2, but then it’s more intense when I get another treatment. Neuropathy is different for everyone, for me it’s not bad. It could become permanent, but for me I want kill as much cancer as possible, so I will live with it. I just have numbness & tingling- no pain, though. Sending positive thoughts your way!

Thank you, warrior! That's just the way I feel; if I have to use a walker rather than cut down the chemo and die, it's a no-brainer. I just need to stand up for the treatment I prefer. I know neuropathy can be very serious, so I'm not making light of it. It's just a choice for me right now. Carrie

@carrie40
I had abraxanxe removed in late December of 2024 as I was considered cancer free after a radiation treatment on my liver that lasted about 5-6 months. In December 2023 following my USERCP dr said it looked like I had peritoneal nodules but they were too small to confirm it was cancer. My UCLA dr said we assume it is and treat as such with gem/abraxane/cis (cisplatin only until sept 2024). My city of Hope dr said peritoneal nodules were not cancer since they hadn't grown (I had been on abraxanxe). Be careful with the drs you choose - most conservative thinking are the best. City of Hope dr had me only in gem from Jan 2025 - April 2025 and that's when the peritoneal growth (no man's land exploded) with my aggressive cancer my ca19-9 jumped up to almost 14,000 from April - June. I asked for abraxane to be added back in but my city of Hope Dr refused; wanted me to go on a trial. So I left City of Hope snd went back to Hoag in Orange County. After a disastrous trial of the Naliri chemo my Hoag oncologist allowed me to retry abraxane and now my ca19-9 is at 150. I have ATM, KRAS12-D, TP53 and a peritoneal related mutation now. I wear the iced booties and mittens during my abraxane chemo. It helps decrease chance of neuropathy but by all means it will not prevent it100%. This is just my experience; it may not be yours.

@mnewland99
First of all, I'm so glad to hear from you as I have so appreciated your posts in the past; I hadn't seen any lately-- also hope your class reunion trip went well.
Second, this was so enlightening. I'm going to push for the return of Abrax--and like you, I have the iced booties. According to Guardant from what I can tell is that I don't have any major mutations which I think has helped me sustain life. There is no doubt we have to be our own advocates...Carrie

@carrie40 , I was on Gem + Abraxane + Cisplatin. When I first started, Abraxane hadn't yet been approved by insurance, so I got only Gem and Cis the first treatment. CA19-9 was still increasing 2 weeks later. By then, Abraxane was approved and included in my regimen, and CA19-9 started to decrease.

After about a year, we reduced the Abraxane dose by about 20% for two consecutive treatments to minimize neuropathy and then I missed a treatment due to Covid. There was an immediate (but small) increase in my CA19-9, and slight growth of my tumors noted on MRI. I immediately restored the full dose of Abraxane after that; CA19-9 dropped back to previous levels and there was slight shrinkage of the tumors on MRI 8 weeks later, and identified as "stable disease."

Based on the above data, we concluded at the time it was the Abraxane that had been doing the majority of the work, and I kept going with the full dose of everything, neuropathy be damned. "I'd rather have neuropathy than cancer."

About 3-4 months later, one of my "consulting" (2nd-opinion) oncologists encouraged me to drop the Abraxane AND Cisplatin to give my bone marrow, kidneys, and neuropathy a break, using only the Gem as a maintenance monotherapy, but I refused. Fortunately, I was able to get into a clinical trial shortly after that. Within about 4 months, my neuropathy had disappeared, but my cancer progressed, so I got back on the full dose of Gem+Abrax+Cis again. That slowed the tumor growth and brought my CA19-9 back down again and seemed to work for about 6 more months before I started developing resistance to the whole cocktail, with exploding CA19-9 and new tumor growth.

Once again, I was able to get off the G+A+C; first for a brief foray of 3 treatments with 5FU + Naliri, which was ineffective and intolerable, then for another clinical trial (KRAS inhibitor).

It has now been about 3.5 months since my last Abraxane. Neuropathy is slowly receding and hair is slowly growing back. CA19-9 came down about 70% on the KRAS inhibitor (still above normal), but leveled off on the last reading.

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With all that said, if your current cocktail is keeping the cancer at bay, I would not stop or reduce it for anything, unless the neuropathy or other side effects are truly debilitating and life-limiting, or you develop obvious drug resistance and are clearly getting no benefit from the drugs. Make sure to proactively research your clinical trial options so you have something you can jump on quickly with minimal time "off treatment" between them.

The neuropathy I got from my 6 months of pre-Whipple Folfirinox also resolved a couple months after stopping. I have no medical training, so I don't know how far you can take it before suffering permanent damage, but I avoided it on both regimens.

I can't tell if the ice booties and compression socks kept my neuropathy from getting worse or not, but I would stick with them on the assumption they help. One forum member here got good results from acupuncture treating neuropathy, but I didn't see any noticeable benefit.

For the record, I have a germline ATM mutation and a somatic KRAS G12D mutation. Everyone is different, but those may have contributed to my Abraxane response. Your mileage may vary. Best wishes!