My dad (76) was diagnosed with stage iv pancreatic cancer

Posted by ro0891 @ro0891, Apr 21, 2023

My dad (76) was diagnosed with stage iv pancreatic cancer with several liver mets. Did 5 cycles of FOLFIRINOX 5-FU. Progression scan this week showed mix results. Seems the pancreatic tumor was demonstrating some dying cells, some liver Mets grew while some decreased. Our Dr. Recommended switching to abraxane/gemcitabine given his cancer symptoms were not really improving. He got his first round this week- he has been experiencing the worst pain he has yet after this treatment. I am worried that we may have not made the best decision and he is reluctant to get a second opinion. Can anyone share their experience of switching chemo regimens? How long does it usually take to notice a difference? Any advice is appreciated- at such a loss right now. There is so much information to read and each case is so different- but hearing other stage iv stories give me a clearer picture. Thank you all in advance.

Update: 3 cycles of abraxane/gemcitabine are taking a toll on him. Needed a blood infusion and 5 iron infusions. Any advice will help. I am happy with his team but am starting feel discouraged. Has anyone gotten radiation at this point?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I was also stage IV. Did 5fu fulfurinox. No pain but did have neuropathy issues. When my platelets continued to drop and neuropathy got worse, they took off the ox. Encourage me to get protein any way I could. Also the pre-meds seemed to really help. I never switched treatments. 14 rounds

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Hi my cousin started the Abrax/gem first and really did not have any bade side effects. What exactly is your dad experiencing with this chemo
Medication ? My cousin had more side effects with the 5 FU. She vomits right after taking the FU. I hope your dad will be better able to tolerate the Abraxane Gemcitabine. Prayers for him and your family. I know it's difficult. It's a long process and the oncologist does switch treatments when needed.
Sincerely Susan

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2nd opinion and consideration for a short break in treatment to recover

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Yes a break in treatment does help body, but unclear if it messes with treatments to remove cancer

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It does seem like 5 treatments should be enough to show progress if the meds are working. But a lot may depend on the patient's biology, specifically genetic mutations.

In my case, I did 12 rounds of FOLFIRINOX over six months, without any significant change in CA19-9 levels.

MRIs showed the mass remaining about the same size over those six months, but the surgeon said it was hard to determine if the whole tumor was still alive, or if part of what showed on the MRI was just necrotic tissue killed by the chemo.

Post-operative pathology graded my chemo treatment as a "2" ("Partial Response") on a scale of 1 to 3, with some of the tumor tissue indeed being necrotic.

My cancer recurred 4 months after the Whipple, and I started on Gemcitabine + Abraxane + Cisplatin shortly after. So it wasn't technically a switch mid-stream, but a different therapy that has had a bigger impact on CA19-9 after 3 months than FOLFIRINOX did after 6 months.

In my case, I have the ATM mutation, which may make the cancer more susceptible to platinum-based treatments, but both my current and previous regimens had platinum elements, so we don't know why the latter has produced a better response for me.

Aside from total hair loss, the latter has been easier on me at age 60 than the former was at age 58. (I had more nausea and fatigue with the FOLFIRINOX, plus sleep deprivation from two nights with the take-home pump.) I've been dealing with neuropathy from both.

In another thread, member @stageivsurvivor described how he took periodic time off from the platinum agents to minimize the neuropathy, so that's kind of a switch-up, but not wholesale.

Any way you shake it, it's worth exploring your next steps (clinical trials with newer therapies and travel to access them) long before you actually need them. That sounds like your dad's next consideration.

I can't say much about radiation, other than learning it was not an option for me due to the multiple tumor locations and nearby organs that would be damaged by radiation.

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You may also be interested in this related discussion:
- Anyone on Gemcitabine with Abraxane? How long? Effective? https://connect.mayoclinic.org/discussion/gemcitabine-and-abraxane/

@ro0891, how is your dad doing? Did he take a treatment pause?

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We spoke to our dr last night to review my husband's scan. He is stage 4. There is a lesion that has grown around abdomen area and dr is concerned. He is switching my husband to the Abarx/Gem from the Folfirinox, which doesn't seem to be working after 7 treatments. The tumor itself on pancreas did not grow, but didn't shrink either, but two lesions have increased in size in other areas. ( His CA 19 markers went down for all the first 5 treatments, but rose a bit on the 6th treatment.) He begins Gem/Ax this Friday (Dana Farber). I'll update on side effects. He didn't have too many bad effects from the FOlrinox, (some cold sensation in fingers, fatigue, and occasional diarrhea after the 6 and 7 treatments. ) so we will see how this goes. The dr claims side effects aren't that bad.
There is no pump, so he can sleep in a bed instead of the recliner he used for two nights, as he was afraid he'd sleep on the pump and disconnect. I believe the dr said it is weekly treatment for 3 weeks, then a week off. We have a call scheduled w nurse to go over details. I hope this new treatment works. Dr said he could have considered radiation, but he wants to try this treatment first. And he said there are no clinical trial meds he can use right now that are appropriate. Any thoughts on the chemo vs. radiation treatments? It's so difficult to know what is best to do. I hear radiation can damage other organs. I will ask dr. for more details-- We have an in person appointment on Friday.

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Regarding Abraxane: If you run into an insurance issue with it, the manufacturer (Bristol Meyers Squibb) has a charitable / compassionate use discount, based on income level. Your doctor "should" be able to justify it as "medically necessary" and have insurance cover it, but sometimes they give up too soon and send patients directly to that program. BMS just sent out a letter saying several insurers are abusing this process, and they will be looking a lot more closely at insurance policies when those applications come it. As a result, there might be some delay before BMS and your insurer finish fighting it out, affecting how long it takes you to actually start receiving the drug. 🙁

@k13 and others trying to sleep with the take-home FOLFIRINOX pump:
I toss and turn from side to side as well as sleeping on my back, so the recliner was no help for me. What I did was got a skin-tight lycra shirt (1 or 2 sizes smaller than a "comfy" shirt) to sleep in. I would put that on over the pump, and tuck the hoses into the neck strap of the pump before bed. It was light enough and cool enough to sleep in, didn't catch on the sheets when I rolled, and would hold the hoses and pump against my chest regardless of sleep position (except stomach). I suppose you could rig up something similar with a small backpack worn backward, a sports bra, Ace bandages, or some other patentable invention of your own design. 🙂 Good luck!

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@k13

We spoke to our dr last night to review my husband's scan. He is stage 4. There is a lesion that has grown around abdomen area and dr is concerned. He is switching my husband to the Abarx/Gem from the Folfirinox, which doesn't seem to be working after 7 treatments. The tumor itself on pancreas did not grow, but didn't shrink either, but two lesions have increased in size in other areas. ( His CA 19 markers went down for all the first 5 treatments, but rose a bit on the 6th treatment.) He begins Gem/Ax this Friday (Dana Farber). I'll update on side effects. He didn't have too many bad effects from the FOlrinox, (some cold sensation in fingers, fatigue, and occasional diarrhea after the 6 and 7 treatments. ) so we will see how this goes. The dr claims side effects aren't that bad.
There is no pump, so he can sleep in a bed instead of the recliner he used for two nights, as he was afraid he'd sleep on the pump and disconnect. I believe the dr said it is weekly treatment for 3 weeks, then a week off. We have a call scheduled w nurse to go over details. I hope this new treatment works. Dr said he could have considered radiation, but he wants to try this treatment first. And he said there are no clinical trial meds he can use right now that are appropriate. Any thoughts on the chemo vs. radiation treatments? It's so difficult to know what is best to do. I hear radiation can damage other organs. I will ask dr. for more details-- We have an in person appointment on Friday.

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Ask about the MRI guided radiation treatment. This is the latest type of radiation. My understanding is that radiation can be targeted optimally with this technique

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Thank you . I will ask. I have read about that SBRT on this site as well as in a Dana Farber publication that I read recently.

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