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CA19 increase, gaining weight and feeling better - Confused

Posted by maxmom @maxmom, May 25, 2024

Diagnosed in Dec. 2023 - Stage 3 borderline resectable - CA19 217. Did 6 rounds of 5FU and CA19 went down to a low of 133. Scans showed no improvement but no spread. Switched to Gem/Abrax. After 4 rounds, I've gained back 15 lbs, have more energy, generally feeling better with some pain off and on but my latest CA19 was 176. After first round of GEm/Abrax it went down to 123 then up to 133 now 176. New scans in June but am I in for a letdown?

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stageivsurvivor | @stageivsurvivor | May 11, 2025
In reply to @carrie40 "Thank you for this posting; I plan to start the Gem/Abrax and would LOVE to gain..." + (show)
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Thank you for this posting; I plan to start the Gem/Abrax and would LOVE to gain 15 pounds! I lost 25 (from 120, not overweight) after a brief Foflorinax treatment and the Whipple--almost 2 years ago. I am getting even skinnier now--so need to do something while waiting for a clinical trial. Your posting helps ameliorate my fears....Carrie

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Regarding weight loss, was a fecal elastase-1 test ever ordered to measure the output of digestive enzymes from your pancreas? If not, that is a starting point in determining if the weight loss is due to Exocrine Pancreas Insufficiency (EPI), a common sequela of having a tumor in the pancreas and also in those having the Whipple procedure. If the value of elastase is 200 micrograms/gram stool or less, it indicates impairment and treated with Pancreatic Enzymes Replacement Therapy (PERT). If you are on PERT pancrealipase product, it may need to be optimized. This on-line dosing calculator will make the process easier-
https://digestthis.ca
If the weight loss is due to cancer Cachexia, that is a metabolic-based cause requiring a clinical trial drug now undergoing registration with the FDA. It is called Ponsegromab.
https://www.pfizer.com/news/press-release/press-release-detail/pfizer-presents-positive-data-phase-2-study-ponsegromab

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carrie40 | @carrie40 | May 11, 2025
In reply to @stageivsurvivor "Regarding weight loss, was a fecal elastase-1 test ever ordered to measure the output of digestive..." + (show)
Profile picture for stageivsurvivor @stageivsurvivor

Regarding weight loss, was a fecal elastase-1 test ever ordered to measure the output of digestive enzymes from your pancreas? If not, that is a starting point in determining if the weight loss is due to Exocrine Pancreas Insufficiency (EPI), a common sequela of having a tumor in the pancreas and also in those having the Whipple procedure. If the value of elastase is 200 micrograms/gram stool or less, it indicates impairment and treated with Pancreatic Enzymes Replacement Therapy (PERT). If you are on PERT pancrealipase product, it may need to be optimized. This on-line dosing calculator will make the process easier-
https://digestthis.ca
If the weight loss is due to cancer Cachexia, that is a metabolic-based cause requiring a clinical trial drug now undergoing registration with the FDA. It is called Ponsegromab.
https://www.pfizer.com/news/press-release/press-release-detail/pfizer-presents-positive-data-phase-2-study-ponsegromab

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Thank you--I have made notes and will check with my oncologist about a fecal elastase test. After 2 years of struggling to gain weight, I think it's time to know why I stay so emaciated. Carrie

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