Anyone on Gemcitabine with Abraxane? How long? Effective?

What a great ray of hope your post is Your journey is somewhat similar to what I am experiencing! So hard to find others like me @ 73 with similar side effects, except it has gone to my fingertips. The bone marrow pain is bad at times and is coming closer to the treatments than before. I was given a sentence of 11 months and am still here 🙂 but I am not considered a candidate for any surgeries. Mine is also tail, some of the body then out to the adrenal gland and lungs. My CA 19-9 started at 450 and is now 16.9. It did go as low as 8 but I think my "arthritis" issues have driven it up those few points.
I am a retired Army Nurse so I loved your statement that "we only have this moment and this day to make peace with it all, and soldier on". Better to be on this journey than the alternative.

Hi Helena, I started being treated with gemzar & abraxane in June, every 2 weeks & now every 3 weeks because my bloodwork usually came back low. My first chemo was in October 2022 with Leucovorin, Fluorouracil, Oxaliplatin & Irinotecan, which I had 12 or 14 courses. I'm only on my 5th or 6th treatment of g-a. I haven't had many side effects especially if I remember to keep drinking! I had one episode with side effects: achy joints, muscles, low grade fever up to 101 & physically wiped out. I found Tyenol helped relieve & reduce the side effects. I feel so fortunate I rarely have had nausea or diarrhea but I suffer with constipation a lot, so fiber is my friend! Another side effect is feeling tired out or lack of strength & stamina. Some days are better than others but I'm learning to take a nap when I feel so tired. Since I've been on g-a my cancer marker numbers have been going up. After my last CT, the tumor in the tail has only grown 4mm & the lesions on my liver have stayed almost the same. It is interesting how differently the chemo affects everyone, but that's what makes us all unique. I'm getting chemo tommorrow, so I keep hoping the drugs will affect my cancer. Take care.

Hello Colleen, I am doing okay… chemo was pretty much as per usual… 2 hours at the cancer centre… I was a bit more tired this time perhaps… and then the steroid bump kicked in. I did go home and rest. A Small dose of dexamethasone is parsed out for two days after… a softer landing, I suppose. Then soon enough Friday comes around… and so it goes… until the 13 day break. Affects and effects are subtle… and difficult to register., and there are no measures other than 'feeling' and with an ever shifting reality or awareness comparisons are confounded. I am living the Now much better than before my diagnosis, but it’s a heck of a price to pay. But I have heard that disease can be a 'teacher.' and well perhaps my lessons are not quite completed yet. And my goodness how many kinds of hope are there? Why is it essential to lighting the mind, and creating even just a bit of a future? Can I live with unbuttressed hope, unsupported by much definitively.? Do I trust the current declaration of a 'stable tumour' and will that hold true at the next CT scan in September? Minimal science to be practiced at my end… scant data to call upon. There is just the next moment, day or week… and a path of careful steps, literally and figuratively.

Best wishes to you as you make your way along. Stay strong. RK

Hi @richardkotowich, how are you doing? How has this latest chemo treatment been after the brief hiatus?

Good to hear you are doing well, and have a great attitude toward this! Glad to hear there's hope my hair might come back as well.

Just wondering if you had genetic testing, and if so, if it identified any specific mutations. My curiosity is whether G/A works better than Folfirinox in certain people, and if so, why.

In my case (with ATM mutation), I'm getting a much better response to G/A (with Cisplatin added) every 14 days.

Regarding the neuropathy:

Mine got pretty bad while on Folfirinox, but resolved about 6 months after I stopped. There were actually two odd aspects to it:

1) I was experiencing a severe shock in my calves, going from my feet upward through calf muscles, whenever I leaned my head forward (neck flexion) abruptly. It was similar to L'Hermitte's sign, but with different (than typical) limbs affected.

2) I also had a severe foot drop on the left side and inability to dorsiflex (lift toes off the ground), which may have been related to the chemo. It turns out that I had a habit of sitting in my office chair in a half cross-legged position: Outside of my left calf resting on my right femur at the kneecap. Electromyogram revealed reduced signal common to both feet, as expected from the neuropathy. It also revealed additional damage to my left peroneal nerve.

The latter damage was a surprise, because there had been no trauma to the area. But apparently the nerve was fragile and susceptible because of all the Folfirinox, and fell victim to the cumulative time spent sitting that way. It took a few months of conscious effort break that habit, but I was rewarded with that aspect of the neuropathy and foot drop disappearing.

I have no idea if something like that is related to your foot drop, but since it took a little out-of-the-box thinking (and a neurology exam) to resolve, I hope passing it along might be helpful to you or to someone out there.

Hello from Canada.
I am on G/A regimen… since late Feb./23. 3 Fridays treated the skip a Friday… around fifteen treatments to date. Diagnosed in July I had been of Folfirinox since October but it 'wasn't doing its job' (increase to the tumour in head of pancreas) so the switch to G/A. After the last CT scan about 2 months ago I was told there was a slight decrease in size… with moe imaging diagnostics to come in late September. (no liver tissue in my case and no apparent spread). Here's hoping. I return to the chemo wheel tomorrow after a bit of a hiatus from treatment to an urology procedure to remove a stone from my ureter. Pardon the detail. Anyway, I am feeling quite well actually 'within the frame of chemo'… except for the neuropathy in finger tips and my toes and soles, variable appetite and energy levels, diminished eyesight, some leg swelling… and most difficult presently a left foot drop step. Hampers everything. Oh, hairless came immediately after starting G/A but to my surprise it is growing back this summer.
But I am active, and able ~ have even travelled some and generally 'I am making do' with the love and support of others'. It's on with chemo and patiently living with uncertainty… but life, and I will take it.
Last summer I was given 12 months to live with chemo (i was cast into a living grief fo a short life. I am 73) and only in mid-Sept. I was told I was borderline candidate for resection, if I took the harsher treatments of Folfirinox… A year later I still get to be with family and friends, and serve on committees, etc.
yes, we only have this moment and this day to make peace with it all, and soldier on… now there's a mixed metaphor. Best wishes to you on this journey. I hope this offers others a small ray of hope. R.

I am doing 2 weeks on and 1 week off cycle since 22 July 2022. Platelets are still okay. Did not have any surgeries though.

I am doing this every two weeks and wonder about the efficacy since not in day 1,8,15 regimen. Can’t find literature on this type of cycling.
Did 14 rounds of folfurinox then pancreadectomy and spleen removed. Thinking that missing spleen affects my body’s ability to build platelets this not being able to do this 3 weeks in a row.
Does anyone have positive results from doing a regime other than day 1,8,15 as prescribed?

My husband continues to progress on this. He did 3 times a month for 13 months-39 treatments - and is now doing twice a month due to platelet issues - 8 so far and CA 19-9 still in normal range- down from 4500.
He will get Fulforinox when this stops working.
Not a candidate for surgery.

Wow @199 , 33 treatments! Three months since my reply above, and going for Gem/Abrax/Cis #15 this Friday (6.5 months of biweekly infusions so). Still finding it more effective and tolerable than Folfirinox. My CA19-9 started around 700 after discovering the recurrence, but has leveled off at 49 the last two treatments. Scans show a tiny amount of shrinkage -- labeled as "stable disease" -- but I hope this is not the beginning of the end of its effectiveness.

Everyone definitely responds in a different way. FWIW, I have the ATM mutation, and I wonder if that accounts for a better response to GAC than to Folfirinox.