Unclear on whether to use GemCap or GemCis only for chemo

Posted by maryamumar @maryamumar, Aug 15, 2023

Hi everyone!

My father is 70 years old and he was diagnosed with stage IIB pancreatic cancer 2 months ago. He has had whipple surgery and we are now making a decision on the route for chemo.

Is there anyone here with stage IIB, who can share their treatment plan?

Thanks for all the support!

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Were the surgical margins and lymph nodes all clean, making this just a normal "adjuvant" treatment? Or was there any leftover cancer detected that needed aggressive treatment?

In my case, I was diagnosed at age 58 w/ resectable Stage-II PDAC, had 6 months of Folfirinox, clean Whipple, NO adjuvant treatment (all clean DNA tests and MRIs), then recurrence at surgical site w/ metastasis 4 months later, and began more chemo shortly after that.

The Folfirinox was only partially effective at shrinking the tumor (pancreas head) or reducing CA19-9. The new regimen (Gemcitabine + Abraxane + Cisplatin) has been slightly more effective on tumor size and much more effective reducing CA19-9. More tumors appeared early, but they are not growing now.

I was told my ATM mutation was sensitive to platinum-based agents, so I thought the Oxaliplatin in Folfirinox would do a bang-up job, but no... So I wasn't sure, but am pleasantly surprised that the Cisplatin in my cocktail seems to be helping, at least for now.

Tolerability: I found the Folfirinox to be a little more miserable than the GemAbraxCis, especially the 46-hour pump you take home with Folfirinox. Got peripheral neuropathy from both. Minor hair loss and graying with Folfirinox, total loss on GemAbraxCis.

Summary: You might ask the medical oncologists how often they'll test your response to treatment and with which methods (imaging, CA19-9, Signatera/ctDNA). My emphasis would be on how quickly they can determine which (if either) works better so you can switch (if necessary) w/o wasting a whole lot of time or risking spread of the disease. You may have mutations that guide treatment in a totally different direction.

Please post if they give you a good rationale for their decision, and good luck!

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@markymarkfl

Were the surgical margins and lymph nodes all clean, making this just a normal "adjuvant" treatment? Or was there any leftover cancer detected that needed aggressive treatment?

In my case, I was diagnosed at age 58 w/ resectable Stage-II PDAC, had 6 months of Folfirinox, clean Whipple, NO adjuvant treatment (all clean DNA tests and MRIs), then recurrence at surgical site w/ metastasis 4 months later, and began more chemo shortly after that.

The Folfirinox was only partially effective at shrinking the tumor (pancreas head) or reducing CA19-9. The new regimen (Gemcitabine + Abraxane + Cisplatin) has been slightly more effective on tumor size and much more effective reducing CA19-9. More tumors appeared early, but they are not growing now.

I was told my ATM mutation was sensitive to platinum-based agents, so I thought the Oxaliplatin in Folfirinox would do a bang-up job, but no... So I wasn't sure, but am pleasantly surprised that the Cisplatin in my cocktail seems to be helping, at least for now.

Tolerability: I found the Folfirinox to be a little more miserable than the GemAbraxCis, especially the 46-hour pump you take home with Folfirinox. Got peripheral neuropathy from both. Minor hair loss and graying with Folfirinox, total loss on GemAbraxCis.

Summary: You might ask the medical oncologists how often they'll test your response to treatment and with which methods (imaging, CA19-9, Signatera/ctDNA). My emphasis would be on how quickly they can determine which (if either) works better so you can switch (if necessary) w/o wasting a whole lot of time or risking spread of the disease. You may have mutations that guide treatment in a totally different direction.

Please post if they give you a good rationale for their decision, and good luck!

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There was spread in 2 lymph nodes and one of the margins was less than 0.1 cm.

Folfirinox is out of the question because of his age mostly. I will ask the questions tomorrow about response to treatment. Thank you so much!

Hope you are feeling better.

REPLY
@maryamumar

There was spread in 2 lymph nodes and one of the margins was less than 0.1 cm.

Folfirinox is out of the question because of his age mostly. I will ask the questions tomorrow about response to treatment. Thank you so much!

Hope you are feeling better.

Jump to this post

I'll be 71 next month, stage 4, inoperable adenocarcinoma in the body and some abdominal lesions, but no lymph node involvement. I currently receive modified Folfirinox chemo. I assume your dad's oncologist doesn't want to provide the full, 100% dose to your dad because of age. Mine didn't either. As he pointed out, the dosage level was tested on people much younger than me; it also tends to result in a 10% hospitalization rate overall. So he reduced the dosage. Cycle 1 was at 80% of full dose, and it was arduous--lots of nausea and diarrhea that were difficult to control with meds. Beginning with cycle 2, the dose was reduced to 60% of full dose, and I've tolerated that much better. So far, it appears to be effective: My CA 19-9 has fallen dramatically, and my oncologist is suggesting that, depending on future test results, I might be a candidate for maintenance therapy. I have never tried the regimens that were suggested to your dad, but as you ask questions about treatment, ask the oncologist whether the Folfirinox dose can be reduced and still provide effective treatment. It might give you another good option to consider. (I see that @markymarkfl mentioned that Folfirinox causes little hair loss. In my case, my hair was coming out by the handful, so I buzzed it off. It has never come back, and I've even had a 6-week chemo layoff recently. C'est la vie...)

REPLY
@ncteacher

I'll be 71 next month, stage 4, inoperable adenocarcinoma in the body and some abdominal lesions, but no lymph node involvement. I currently receive modified Folfirinox chemo. I assume your dad's oncologist doesn't want to provide the full, 100% dose to your dad because of age. Mine didn't either. As he pointed out, the dosage level was tested on people much younger than me; it also tends to result in a 10% hospitalization rate overall. So he reduced the dosage. Cycle 1 was at 80% of full dose, and it was arduous--lots of nausea and diarrhea that were difficult to control with meds. Beginning with cycle 2, the dose was reduced to 60% of full dose, and I've tolerated that much better. So far, it appears to be effective: My CA 19-9 has fallen dramatically, and my oncologist is suggesting that, depending on future test results, I might be a candidate for maintenance therapy. I have never tried the regimens that were suggested to your dad, but as you ask questions about treatment, ask the oncologist whether the Folfirinox dose can be reduced and still provide effective treatment. It might give you another good option to consider. (I see that @markymarkfl mentioned that Folfirinox causes little hair loss. In my case, my hair was coming out by the handful, so I buzzed it off. It has never come back, and I've even had a 6-week chemo layoff recently. C'est la vie...)

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@ncteacher ,
You made me smile about hair! Maybe we just have more to lose😊
Fulfurinox definitely took my hair but it did begin growing back and in 6 months I had enough curls to wear a headband! Alas, that was brief as I began Gem Abraxane and my hair fell out the first week. Oh well, I’ve figured out my best wig color and now know where to buy them at great prices!
I continue to work full time and am quite active except day 2 and 3 of my treatment

Have to get over the hair concern. There are hats for every season and most sports!

REPLY
@gamaryanne

@ncteacher ,
You made me smile about hair! Maybe we just have more to lose😊
Fulfurinox definitely took my hair but it did begin growing back and in 6 months I had enough curls to wear a headband! Alas, that was brief as I began Gem Abraxane and my hair fell out the first week. Oh well, I’ve figured out my best wig color and now know where to buy them at great prices!
I continue to work full time and am quite active except day 2 and 3 of my treatment

Have to get over the hair concern. There are hats for every season and most sports!

Jump to this post

I'm sure you both started out with a lot more hair than I did! I did lose fair amounts of hair on my scalp with Folirinox whenever I ran a comb through it. A lot turned gray, but after 6 months there was still just enough shade to prevent a sunburn, and it did return during my brief 1.5 years off chemo.

By comparison, on the GemAbraxCis, it ALL fell out within 6 weeks: scalp, eyebrows, upper & lower eyelashes, mustache, beard, etc! When I drink Gatorade out of a bottle, the bottle constantly gets stuck to my face because there's such a perfect vacuum seal on my upper lip.

On the bright side, I'm saving time & money on shampoo and razor blades. My oncology PA said it was a good sign the treatment was killing fast-growing cells of the bad kind as well as the good kind. As much as I'd rather have neuropathy than cancer, I'd also rather be bald than have cancer. C'est la vie indeed!

My sincere best wishes and hugs to all who are going through this.

REPLY

I am 62 year old recently diagnosed with stage IIB adenocarcinoma on the tail of my pancreas. Had distal pancreatectomy splenectomy procedure in April and am now on mFolfirinox (7 down, 5 to go). I am tolerating chemo well. Most difficult challenge is fatigue. Nausea is well controlled with meds, especially Olanzapine of which I take 10mg. Also helps with appetite. Seems odd that a few years difference would impact your dads chemo choice as mFolfirinox is the “standard of care”. Maybe it is dependent on you dads physical health. Hope this helps.

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