Pancreatic Cancer Group: Introduce yourself and connect with others

@cjcurtis
My husband just finished 5 rounds of the same chemo.
It's been rough. No nausea but extreme fatigue, general overall pain and terrible mouth sores. Hey was hospitalized twice with neutropenia.
PET scan schedule in 9 days to see how successful it's been.

Is your husband for 3 infusions/month for 3 months?

@tomrennie
He's had 5 rounds of abraxane & Gemzar & has been experiencing joint pain, fatigue and the worst part are his terrible mouth sores. He's in a lot of pain & has lost almost 20 pounds, These past few days, he sleeps all day & won't eat saying it's too difficult.
He's scheduled for Whipple 5/21 & I'm concerned because I don't think he's emotionally or physically ready for this.
We will see his surgeon tomorrow to reevaluate and ask more questions.
If anyone can suggest questions we should bring up, I'd appreciate the input.

@tomrennie I forgot to answer that his chemo “cocktail “ is Gemcitabine and Abraxane. Anyone else had success with this combination, or any comments on what we can expect? My husband has experienced extreme fatigue and nausea thus far, and after infusion no. 3, we are seeing hair loss.

@jimcaskowski https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071
That link leads to something called "Magic Mouthwash" and it was the only thing that gave me any relief from bad mouth sores. It'll have to come from a compounding pharmacy. There's a good chance the Abraxane will give him increasingly bad neuropathy in his feet, lower legs and fingertips. Look up cold therapy booties and mittens that can be used before his next infusion to help prevent the neuropathy. I tolerated Folfirinox pretty well, but Gemcitabine/Abraxance was rough as a cob to tolerate in my case. Good luck.

@cjcurtis I was diagnosed with stage 4 non-operable due to mets to lungs. That was in 2022 @ 72. I was given 11 months with treatment. I am still here thanks to gemcitabine & Abraxane. Started with 2 weeks on 1 off and then changed to every other week. I had a 4-month break at the beginning of 2024 and am now on another. In total I have had 85 chemo treatments with Gemczar/Abraxane. Lost my hair after the second treatment; gained 35 pounds (now down 20 while on "break"). For nausea I followed the directions for the first 2 or 3 treatments which was generic Zofran alternating with generic Compazine. Now I use a Zofran maybe once a month 🙂 My most challenging difficulties have been the neuropathy, swelling of legs especially, then last fall blood clots. October thru December were brutal with extreme fatigue, heightened emotions and felt like I went through "chemo withdrawal" from January 2026 til about mid-February, then I had an energy boost & am back to "normal" except for pancreatic cancer & my CA19-9 is doubling the last 2 months hitting 1529.8 in April. Will get PET scan this week to see what is happening. Hair is growing back 🙂 (did not need it to start on my legs! 🙂 first)!

@tomrennie My husband was diagnosed in March 2026 (after months of tests and scopes,etc. that were inconclusive) with pancreatic adenocarcinoma with spread to adjacent lymph nodes. He also has an obstructing mass in his duodenum which required placement of a stent. He began chemo in the hospital a month ago, and has just completed his third infusion. We are hoping the tumors can be shrunk enough to allow surgery, but at this point it’s doubtful. We are anxious for results of the first scan to check progress. But that’s still a ways off.

@tomrennie
He's had 5 rounds of abraxane & Gemzar & has been experiencing joint pain, fatigue and the worst part are his terrible mouth sores. He's in a lot of pain & has lost almost 20 pounds, These past few days, he sleeps all day & won't eat saying it's too difficult.
He's scheduled for Whipple 5/21 & I'm concerned because I don't think he's emotionally or physically ready for this.
We will see his surgeon tomorrow to reevaluate and ask more questions.
If anyone can suggest questions we should bring up, I'd appreciate the input.

@cjcurtis I was diagnosed with stage 4 non-operable due to mets to lungs. That was in 2022 @ 72. I was given 11 months with treatment. I am still here thanks to gemcitabine & Abraxane. Started with 2 weeks on 1 off and then changed to every other week. I had a 4-month break at the beginning of 2024 and am now on another. In total I have had 85 chemo treatments with Gemczar/Abraxane. Lost my hair after the second treatment; gained 35 pounds (now down 20 while on "break"). For nausea I followed the directions for the first 2 or 3 treatments which was generic Zofran alternating with generic Compazine. Now I use a Zofran maybe once a month 🙂 My most challenging difficulties have been the neuropathy, swelling of legs especially, then last fall blood clots. October thru December were brutal with extreme fatigue, heightened emotions and felt like I went through "chemo withdrawal" from January 2026 til about mid-February, then I had an energy boost & am back to "normal" except for pancreatic cancer & my CA19-9 is doubling the last 2 months hitting 1529.8 in April. Will get PET scan this week to see what is happening. Hair is growing back 🙂 (did not need it to start on my legs! 🙂 first)!

@199 Good luck with your PET scan this week. I had a hospital testing day yesterday. Nothing too alarming, but need to do another tour of ologist appointments. At times, I feel like a quarterback directing all of the moving players of the care team. But, they are keeping me alive as comfortably as possible. Anyone else ever feel this way?

@199 I am very encouraged to read about your success with Gemcitabine and Abraxane. I am trying to calculate how long it took for you to receive 85 treatments with your schedule. Certainly a few years. But you have most certainly defied your doctor's initial predictions and have hung in there through many ups and downs. My husband is having his 4th infusion tomorrow, but has already lost a great deal of weight. I'm concerned that this may slow his progress in chemotherapy or halt it altogether, since he looks almost skeletal to me. He is eating as much as he can stomach, but nothing seems to "stick." Did you ever face that challenge with weight loss? Perhaps it is not as huge an issue as I fear. I will be asking his oncologist what she thinks.