Pancreatic Cancer Group: Introduce yourself and connect with others

@jimcaskowski Please let us know how the visit with the surgeon goes?

@cjcurtis @jimcaskowski It can be really difficult plugging along with challenging treatment, when you don't know if it is working. We all wish there was a magic pill to make the cancer go away without any pain. Unfortunately, I don't know of one. Personally, I a very thankful for the folks here. Some have been at this a shockingly long period of time. I am amazed at how they continue to fight though so many challenges. You will hear little tricks of the trade that they have learned from their treatment experiences that hopefully help. How are things for you folks today?

@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?

@56pan Thanks for the Magic Mouthwash suggestion. I forgot about it. My mouth sores can be a problem.

@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)!

@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.

@jimcaskowski My husband is receiving infusions 2 weeks on/1week off. It was initially to be 3 weeks in a row, but he had such a terrible time recovering from the first dose that his oncologist relaxed the schedule a bit. I’m not sure how long (how many cycles) are planned. I seem to recall a 12-week time frame being mentioned early on. Of course the treatment plan is always subject to change. I’m sorry your husband has had to be hospitalized. Sometimes it seems the cure is worse than the disease! My husband also has mouth sores—actually an area of bone poking through the gums. Dentist couldn’t explain it and thinks it could be related to the cancer. This happened before chemo began. This cancer causes so much damage. I wish you and your husband the best. Thanks for sharing your experience with me.

@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.

@cjcurtis My had had a Distal Pancreatectomy. They removed the Body & tail of the Pancreas as well as his Spleen. They also removed 20 lymph nodes around the pancreas. Cancer was in 14 of the lymph nodes that they removed. My husband ended up too weak for Chemo so he never had treatment at all. He was stage 4 at Diagnosis because they also found Cancer in his lungs. I honestly believe that not getting any treatment is why we had a good year where he felt
halfway normal. My husband was 70 when he was diagnosed.

My husband went through 6 months of testing to see what was wrong with him. He had lost his appetite and lost quite a bit of weight. We kept being told he had pancreatitis but he never had pain. He had so much inflammation in and around the pancreas that they could not see any tumors. We finally went to see a well know Surgery and he felt that doing surgery was the
best way to see what was going on with the Pancreas. He went in and found the tumor which was in the body and the tail.

After Surgery, we certainly debated if we should have just said no to the surgery. We both just wanted to know what was going on at the time and I did not do enough research. We were both so thrilled that the Surgeon was taking us seriously. The oncologist that we were dealing with just kept telling us it was not cancer. They had been doing the CA19-9 and the Levels just kept rising. When it hit 8700 , our Primary Doctor told us to go see the Surgeon.