Any successful experiences with GemAbrax after awful side effects?

Regarding surgery, you could inquire with Dr. Christopher Wolfgang at NYU/Langone (Perlmutter Cancer Center) about treating the liver met with histotripsy. He was an early adopter and there are several articles about it on the internet. I've heard Mayo Jax was getting trained on histotripsy, but don't know their status. Mayo Rochester might be ahead of the curve there, but I have no info at all to confirm it. You could also ask about radiation on the liver met.

Some people have really bad reactions to Folfirinox, and others have really bad reactions to GemAbrax. Some have good results with one or the other, but it's usually more in terms of controlling or shrinking a few tumors, or possibly preventing more mets, than actually killing all the cancer cells.

Folfirinox was harder on me than GemAbrax (with Cisplatin), but never requiring hospitalization. Other members here have been hospitalized due to one or the other. Cardiac arrythmia and pneumonitis are two causes I remember for their hospitalization, with digestive issues possibly being a third cause.

You should ask if they can test your dad for allergy/sensitivity to any of the ingredients in his chemo and in his anti-nausea pre-meds as well.

As markymarkfl said, reactions to chemo vary. GemAbrax (no Cisplatin) has been good for me. I get Decadron with Aloxi 30 minutes before the Abraxane then clear the line & get the gemcitabine. His idea to check for allergy/sensitivity to the ingredients make a lot of sense. Mayo gave me 11 months with chemo 33 months ago.

Sorry to hear about your father's difficulty with GemAbrax. My response has been better, and it wasn't as if it was difficult at first and then improved.

I've been on the GemAbrax for the past 14 months; every other week. It's been effective in shrinking the lung nodules and I've been able to tolerate reasonably well. Usually a couple of days of illness followed by eleven days of feeling fine. Key long term side effects are neuropathy and hair loss. Short term side effects (couple of days) are fatigue, nausea, and constipation. I'm being treated at Mayo Rochester.

Your doctor might be able to modify the dosage to make it more tolerable. But in any event, your father is in the right place for treatment but clearly some changes need to be made.

So, you've been on Gem/Abrax for 33 months?

I had 44 treatments and stopped Jan 2024 through April 2024. My CA19-9 started going up and went back on May of 2024. So, I had a 4-month break during this 33-month journey 🙂 Hoping for another break but have not gotten back to the normal limits of the CA 19-9 yet.

I'm finishing my 26th month of GemAbrax (most of it all with Cisplatin as well.)

I had 12 rounds of Folfirinox before my Whipple.

I had 31 rounds of G+A+C after my post-Whipple recurrence, then a 4-month break for a clinical trial.

(3 rounds of lymphodepleting chemo with Cytoxan and Fludarabine during the trial).

Since the trial failed, I've had 16 rounds of G+A (6 of them also with Cisplatin).

So: 12 + 31 + 3 + 16 = 62 rounds of chemo in the last 3.5 years. The G+A has not been too bad. 🙂

Gives me a little hope there 199 and mark. I had 12 rounds of Folfirinox from late '23 until spring of '24 which did a very good job on my acinar cell type of pancreatic cancer. Long story and not going into it, but the short version is the Folfirinox works very well if you've got acinar cell pancreatic cancer and the BRCA 2 mutation which I had, at least it did on me. But one of the 3 small tumors on my liver was what the surgeon and oncologist called a "rogue" or "escape" lesion as the Folfirinox had no effect on it and it continued to grow. After the VA oncologist, who takes care of me now, had another DNA test done on the biopsy tissue he found out that rogue lesion had had a "reverse mutation" and the BRCA 2 mutation was gone. Told me it's rare butd it happens. Hence, he put me on Gem/Abrax which he said does a better job on cancer without the BRCA 2 mutation. I've had 8 rounds of the Gem/Abrax now and the PET scan from last week did show some shrinkage on the tumor on my pancreas and the remaining rogue guy on my liver. And the info from you two gives me some hope as I imagine I'll have to be on the Gem/Abrax for quite a while. If you don't mind, what are your ages 199 and Mark? I'm 76, which I expect will affect how long I can tolerate the Gem/Abrax.

I just turned 62; was diagnosed and started the Folfirinox at 58 1/2; started the GAC on my 60th birthday.

Aside from hair loss, the biggest side effect has been fatigue related mostly to low hemoglobin, and some decline in kidney function (due mostly to the cisplatin). Keep an eye on your EGFR and creatinine numbers, and get extra hydration after each chemo session, whether you get cisplatin or not, to help keep the kidneys clean.

For hemoglobin, you can get blood transfusions depending on your levels and your healthcare provider's threshold/criteria. Transfusions help but only for a while, and docs can sometimes be very slow to offer them. Procrit (Aranesp) is a drug that helps stimulate RBC and Hgb production, but increases your stroke and blood clot risk if RBC levels get too high. My primary oncologist never offered it, but my secondary did. I've had 4 shots in 4 weeks, but my Hgb is still hanging around 8.0. It's hard to say if I'll ever get a benefit from it. My NP said sometimes the chemo beats up your bone marrow so bad that it just can't produce Hgb like it used to. I don't know if there are other safe supplements that help, but it's worth looking into.

My husband was on gem/abrax for about 5 months after a year on folfironox.

Long story short, he ended up in the hospital this past week with extreme lung inflammation that they are saying probably was from the gem. Doctor is saying no more chemo. His oxygen levels were in the 40s when we went in (should be in 90s). Huge quantities of oxygen forced in with steroids, and he came out of it ok and is home. But, I don't think common to have this happen from chemo, but it was nearly the end of the road for him.

The 3 major problems I've had with Gem/Abrax. is neuropathy especially on the soles of my feet. It started on the Folfirinox but the GA has made it much worse. Like I've got 3 inches of foam rubber strapped to the bottom of my feet and causes instability. #2 is the low RBC which causes shortness of breath but daily exercise helps some with that. #3 is low WBC and I've had covid and then the flu over the last 2 1/2 months. Such a drop in my immunity. An NP that works with my oncologist has started me yesterday on Gabapentin to hopefully help with the neuropathy. Just have to see how that goes. As it is now, I walk like a duck and it's embarassing. But just thankful to the Almighty I'm still here. Thank you all for taking the time to give your input.