What to expect from Gemcitibine chemo/radiation?

Posted by krfinlayson @krfinlayson, Jun 18, 2023

I was diagnosed with stage III pancreatic cancer in Jan 2021. Whipple surgery was performed the following month, followed by 12 treatments of Folfirinox. All was well, until Ca19-9 marker started climbing. CT scans were showing nothing, PET scan confirmed “localized relapse” at the same location ,close to the liver and a nearby lymph node. Surgery is not an option. Treatment plan calls for 3 months of Gemcitibine (weekly for 3 weeks then a week off, repeated for 3 months) followed by 5 weeks of daily radiation and chemo. Scans/bloodwork to monitor results.
What has been your experience with either treatment? I live 4 hrs away from treatment centre. My hope is this will buy me more bonus time with family. Thanks for any input!

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My husband did gem/abrax after fulfirinox. He seemed more tired on the Gem, although it could possibly be the fact that it was the cumulative effect because he had had about 7 prior fulfirinox treatments. Unfortunately, neither was shrinking the tumors. He is scheduled to start radiation later this week. We are praying that will work. He had some neuropathy/tingling but nothing too excessive, and continued to experience the "metallic" taste when eating most foods.

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I am stage III locally advanced and have done 5 weeks radiation and 6 rounds gem/abraxane. I found this chemo far more tolerable than Folfirinox. Daily radiation caused a lot of fatigue and some reflux. But otherwise, not bad. Gem/abraxane infusion takes an hour, compared to 3-4 hours Folfirinox. I did lose all my hair rather quickly on this regimen. My last PET showed no uptake and my CA19 is down to 13, so it has been effective thus far. My surgery is scheduled for next month.

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Thank you for sharing your experience. They are planning just gem, as far as I know. I handled the folfirinox for 12 rounds. My hair thinned a lot, but I didn’t lose it all (which I had expected). I have neuropathy in my hands, lower legs and feet from Folfirinox. Dr said to expect neuropathy, but will monitor. If I can’t handle the Gem or it doesn’t seem to be working they plan to go straight to radiation, otherwise I will do 9 treatments before starting the combination of gem and radiation for 5 weeks. I have a high tolerance and am stubborn - hoping that will help! All the best to you!

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@k13

My husband did gem/abrax after fulfirinox. He seemed more tired on the Gem, although it could possibly be the fact that it was the cumulative effect because he had had about 7 prior fulfirinox treatments. Unfortunately, neither was shrinking the tumors. He is scheduled to start radiation later this week. We are praying that will work. He had some neuropathy/tingling but nothing too excessive, and continued to experience the "metallic" taste when eating most foods.

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Thank you. Wishing your husband well with his treatment. I handled 12 Folfirinox treatments - I hope this new course will work. I tend to view the long term side effects as a small price to pay for life!

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After 12 rounds of Folfirinox, a Whipple, and now 11 rounds of GAC (Gem + Abraxane + Cisplatin), I still consider GAC the easiest.

Abraxane has been the worst so far (for me) in terms of hair loss. Abraxane and cisplatin (like the oxaliplatin in Folfironox) both contribute to neuropathy.

I have no experience with radiation, but if you survived 12 rounds of Folfirinox, the Gemcitabine piece should be comparatively easy to handle. Wishing you the best!

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Thank you. As far as I know so far, it is only Gemcitibine that I will be getting. Hoping for the best!

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I was stage 1 and had 12 rounds of Folferinox after distal pancreatectomy, hope was that the chemo would chase down any cancer cells, but it still spread to my liver, so on Gemzar and Abraxane for 2.5 months so far. My experience with Folferinox was that I was feeling lousy for about 5 days, then much better until next round. The Gemzar/Abraxane is less predictable and more cumulative as far as side effects. I think the fatigue is more intense than with Folferinox (still have neuropathy from the Oxaliplatin four months since ending that treatment). Hair fell out from Abraxane, but cumulative fatigue is the biggest side effect from Gem/Abraxane. I am 67 years old and that is my experience, and the doctors were always open to skipping rounds if I felt too weak. I hope this is helpful. Best wishes.

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Thank you. It helps to know what others have experienced. It gives me an idea of what I may expect. All the best with your fight!

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@ken240

I was stage 1 and had 12 rounds of Folferinox after distal pancreatectomy, hope was that the chemo would chase down any cancer cells, but it still spread to my liver, so on Gemzar and Abraxane for 2.5 months so far. My experience with Folferinox was that I was feeling lousy for about 5 days, then much better until next round. The Gemzar/Abraxane is less predictable and more cumulative as far as side effects. I think the fatigue is more intense than with Folferinox (still have neuropathy from the Oxaliplatin four months since ending that treatment). Hair fell out from Abraxane, but cumulative fatigue is the biggest side effect from Gem/Abraxane. I am 67 years old and that is my experience, and the doctors were always open to skipping rounds if I felt too weak. I hope this is helpful. Best wishes.

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Hi, ken240. Sorry to ask you a q? that should be addressed to my onc., but so far I get very little time with him.

My cancer (diagnosis in Feb. 2023; chemo began 4-4-23) hasn't been staged bc there's still some ambiguity about the nodules on my lungs (i.e., are they metastatic?). I've finished six rounds of Folfirinox, will have at least another two, and will learn, probably next week, what comes next (radiation, or surgery, or radiation plus surgery).

I too have five bad days from Fol., with days 1 and 2 the worst and days 3, 4, and 5 gradually becoming tolerable. Do you know why there's a lag between infusion day and the really bad days? For me, the lag is always four days -- chemo on Tuesday, feel lousy on Sat. and Sun.

Thanks for taking the time to read this, and best wishes to you.

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@k13

My husband did gem/abrax after fulfirinox. He seemed more tired on the Gem, although it could possibly be the fact that it was the cumulative effect because he had had about 7 prior fulfirinox treatments. Unfortunately, neither was shrinking the tumors. He is scheduled to start radiation later this week. We are praying that will work. He had some neuropathy/tingling but nothing too excessive, and continued to experience the "metallic" taste when eating most foods.

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Hi, k13. Another commenter elsewhere suggested using plastic cutlery -- says it eliminated the metallic taste.

If you're concerned about plastic waste, pls know that such cutlery can be reused after being washed in dishwasher or by hand. (Bc I lack a dishwasher, I wash by hand with dishsoap and then soak in a 50/50 vinegar + water solution).

Best wishes.

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