Pancreatic Cancer Group: Introduce yourself and connect with others

Good Morning All! I was diagnosed with pancreatic adenocarcinoma in September 2022 - Stage 2b with some apparent involvement of a couple of lymph nodes. The condition was discovered while being diagnosed for blood in my urine. A CT scan indicated a "spot" on the tail of my pancreas and I was immediately given the enzyme test which came back at just over 3000. The size and location of the lesion was confirmed by MRI. The size of the lesion was described as 3 x 5cm. I was referred to Emory University and Dr. Sarmiento who invented an endoscopic procedure for biopsy and eventual removal of the offending portion of the organ. The plan of action was to enter chemotherapy with the goal of reducing the lesion size for eventual removal. In November, I had 8 rounds of intense chemo with PALONOSETRON HCL, FLUOROURACIL, IRINOTECAN, and OXALIPLATIN. The results were not optimal...no reduction in lesion size but there was a small decrease in the enzyme assay. I've been moved to "palliative" care and have entered a second (6) infusion round of chemo with a completely different set of drugs - the names of which escape me at the moment!. I had new MRI imaging done in January and it's results indicated some small liver involvement. The small liver spot adjacent to the lesion became a problem when my surgeon indicated that I was no longer a candidate for the surgical procedure. As of today, I remain pain free and have never had any of the dire side effects of the chemo drugs. We are continuing treatments aided with lots of prayer that hopefully will further decrease my enzyme count.

I do consider the quality of life vs treatment issues very seriously. I feel 100% now and my labs agree except my CA19-9 is creeping near 200 and recent PET shows suspicion behind liver tumors that were embolized in Y90. The tumor board reviewed my case and feel I have a window now that recision of the liver tumors is advisable. And if a tumor is beginning behind, they will extract it as well. I am considering this rather than chemo as I know eventually my body will say no to it. But life is good right now and if I do my part, eat right, exercise, etc maybe can join you in through the keyhole of survival. The number is 12% now, could move even increase more this year! Don’t give up unless you can no longer laugh and ❤️

Good Morning All! I was diagnosed with pancreatic adenocarcinoma in September 2022 - Stage 2b with some apparent involvement of a couple of lymph nodes. The condition was discovered while being diagnosed for blood in my urine. A CT scan indicated a "spot" on the tail of my pancreas and I was immediately given the enzyme test which came back at just over 3000. The size and location of the lesion was confirmed by MRI. The size of the lesion was described as 3 x 5cm. I was referred to Emory University and Dr. Sarmiento who invented an endoscopic procedure for biopsy and eventual removal of the offending portion of the organ. The plan of action was to enter chemotherapy with the goal of reducing the lesion size for eventual removal. In November, I had 8 rounds of intense chemo with PALONOSETRON HCL, FLUOROURACIL, IRINOTECAN, and OXALIPLATIN. The results were not optimal...no reduction in lesion size but there was a small decrease in the enzyme assay. I've been moved to "palliative" care and have entered a second (6) infusion round of chemo with a completely different set of drugs - the names of which escape me at the moment!. I had new MRI imaging done in January and it's results indicated some small liver involvement. The small liver spot adjacent to the lesion became a problem when my surgeon indicated that I was no longer a candidate for the surgical procedure. As of today, I remain pain free and have never had any of the dire side effects of the chemo drugs. We are continuing treatments aided with lots of prayer that hopefully will further decrease my enzyme count.

Hello Breki,
I am a 65 year old retired psychologist and I can relate to a great deal of what you are saying. I am new to this group so this is also an introduction. I was diagnosed in April 2021 due too odd symptoms with dark urine and light floating stools, followed by developing jaundice. I had a speedy diagnosis, all in one day, from taking to my PA, who noticed bilirubin in my urine, blood tests and a CT scan revealing a 2 cm tumor on the head of my pancreas all on April 21, 2021. Quite a shock. The University of Colorado Health System sprang into action and in 5 weeks I had a Whipple. I researched alternatives thoroughly before making the decision to go forward with the surgery and felt it was my best option. I was diagnosed at Stage IIB, 3 of 28 lymph nodes involved, no metastasis. R0 margins after surgery.

After recovering from surgery I did 12 sessions of Folfirinox which I tolerated better than most do. Chemo was from Aug 3, 2021 to January 25th, 2022. I just passed the 1 year mark of ending chemotherapy. There was a residual diffuse area of concern for potential early recurrence that I had SBRT radiation for in April 2022, after completing chemo. Fortunately no side effects. It was 10 sessions total. No therapy since that time. Labs have been normal and I've had two ctDNA tests (at my specific request since it is not standard in approved protocols). Both were negative and scan has shown no change. My last follow-up was Oct 27th, 2022. I recovered completely from surgery, chemo and radiation and have felt 105%, felt normal energy, and living life fully and happily. However, my last test two weeks ago showed increases in CT19-9 (30s to 171) and CEA (from 1.4 to 4.5, same as before surgery.)

Major concern for potential early recurrence. Scan is unchanged, which is good and I'm waiting on ctDNA results to get the complete picture. Where I resonate most with you is the quality of life issue. My doctors have been clear regarding my priority being quality of life and very respectful with respect to outlining my options. If all else is stable, we will watch and wait, but if ctDNA is positive this time I am considering an immunotherapy trial of ELIl-002 at UC Hospital Anschutz (Denver) where I have received most of my treatment.

I would be very reluctant to undergo any more chemo. It was very hard and depressing even though I bounced back between treatments and fared better than most. My biggest concern is that outcomes are generally very poor to dismal and my quality of life for the past year has been excellent, so I might choose to ride out the rest and just keep quality of life uncompromised for as long as possible with palliative care if needed (not needed at present). Or I might do the clinical immunotherapy trial, which is likely to be less intrusive and debilitating than chemo, though it is impossible to know for sure.

Right now I am doing research and may reach out to Mayo for a second opinion on my options if the ctDNA is positive or scan changes. I am living my life realizing I very likely might only have 6 months to a year to live, but that I might also be among those who make it through that small keyhole of survival. Like you, quality of life is a key concern, but treatment has given me a wonderful additional year of life fully lived, so I really don't know what I might choose to do. Your situation is more dire than mine, yours being inoperable and Stage 4. But our concerns are very similar. I would like to hear more from you or others with these considerations around further treatment vs. quality of life for a potentially shorter time.

Dear Breki, thanks for sharing more about your situation. I'm genuinely interested in what you have been through and your decision-making process. I am so sorry you got such a s***** genetic throw of the dice. I have no genetic markers but my mom and sister both died of lung cancer. They were both heavy smokers.

I have been unusually fortunate to have had such a high quality of life for the last year. But if it turns out that I am having a recurrence, I am really not sure what direction I go.

If I'm ct DNA positive, there is one clinical trial with ELI-002 immunotherapy taking place at our nearby hospital at the University of Colorado, Anschutz in Denver that I would consider participating in.
I would also have the option of using gemcitabine with or without Abraxane. From my research and descriptions from my doctor's I would refuse the Abraxane, and I'm not sure I would do either one given the poor ris-benefit outcome data.
Still thinking it through and waiting to get the results of the CTDNA. More later ,
Beth

Hello Beth. Thanks so much for responding to my post. A bit more about my experience.

First time around, I began treatment November 2019 to April 2020, through a global pandemic! I had to close my practice and basically had to quarantine the entire time. So much loss.
Chemo meds for PC , (which I could not tolerate and ultimately and did not complete) were Fluorouracil, Oxaliplatin, Irinotecan on chemo days and 48 hour pump with Fluorouracil. SBRT radiation for pancreas and the new lung cancer that showed up.

I did have genetic testing and results showed a defective ATM gene which is a marker for breast cancer (which I've had twice), thyroid, lung and PC. All of which I have had. It's also a marker for liver cancer, which I've managed to avoid so far. The genetic testing was very helpful in understanding the why, but was equally devastating as I looked forward to the future.

I get it when people speak about quality of life. This has felt like a sucker punch.

The chemo meds now are Gemcitobine, and Abraxane. Although side affects are not as intense, they are nonetheless dibilitating.

I've decided to discontinue chemotherapy and will meet with my oncologist tomorrow to explore next steps.

The relief I feel is liberating. My husband supports me 100% and, at the same time, feels incredibly sad.

My next challenge will be sharing this decision with family and friends. We don't have children. I'll probably need some advice as to how to approach them with this.

Thanks for listening and I wish you all the best Beth. With gratitude, Breki.

Hello Beth. Thanks so much for responding to my post. A bit more about my experience.

First time around, I began treatment November 2019 to April 2020, through a global pandemic! I had to close my practice and basically had to quarantine the entire time. So much loss.
Chemo meds for PC , (which I could not tolerate and ultimately and did not complete) were Fluorouracil, Oxaliplatin, Irinotecan on chemo days and 48 hour pump with Fluorouracil. SBRT radiation for pancreas and the new lung cancer that showed up.

I did have genetic testing and results showed a defective ATM gene which is a marker for breast cancer (which I've had twice), thyroid, lung and PC. All of which I have had. It's also a marker for liver cancer, which I've managed to avoid so far. The genetic testing was very helpful in understanding the why, but was equally devastating as I looked forward to the future.

I get it when people speak about quality of life. This has felt like a sucker punch.

The chemo meds now are Gemcitobine, and Abraxane. Although side affects are not as intense, they are nonetheless dibilitating.

I've decided to discontinue chemotherapy and will meet with my oncologist tomorrow to explore next steps.

The relief I feel is liberating. My husband supports me 100% and, at the same time, feels incredibly sad.

My next challenge will be sharing this decision with family and friends. We don't have children. I'll probably need some advice as to how to approach them with this.

Thanks for listening and I wish you all the best Beth. With gratitude, Breki.

Thank you for adding me to the group. I'm a 66 year old retired Psychotherapist, and I was first diagnosed with stage 4 inoperable Pancreatic cancer in October 2019.

I went through chemo and radiation. A new lung cancer was discovered from a PET scan to determine the success of both prior treatments in March 2020. I received radiation for this. Post cancer, it took a long time to recover physically and emotionally.

I began to feel more like myself just this past September, 2022. In November, I had my 6 month CT scan.

They discovered a nodule on my left lung which turned out to be metastatic Pancreatic cancer.

My world came to a complete halt...again. The first round of chemo has been completed. I have 2 more to go.

I will keep getting this cancer. It's just a matter of time. There's a big part of me that wishes I hadn't agreed to treatment. Although the chemo meds are "less toxic", their affect has been debilitating...again.

Next time, I will carefully consider quality of life over treatment. I'm wondering if anyone in this group can relate. Thanks, Breki.

Hello Breki,
I am a 65 year old retired psychologist and I can relate to a great deal of what you are saying. I am new to this group so this is also an introduction. I was diagnosed in April 2021 due too odd symptoms with dark urine and light floating stools, followed by developing jaundice. I had a speedy diagnosis, all in one day, from taking to my PA, who noticed bilirubin in my urine, blood tests and a CT scan revealing a 2 cm tumor on the head of my pancreas all on April 21, 2021. Quite a shock. The University of Colorado Health System sprang into action and in 5 weeks I had a Whipple. I researched alternatives thoroughly before making the decision to go forward with the surgery and felt it was my best option. I was diagnosed at Stage IIB, 3 of 28 lymph nodes involved, no metastasis. R0 margins after surgery.

After recovering from surgery I did 12 sessions of Folfirinox which I tolerated better than most do. Chemo was from Aug 3, 2021 to January 25th, 2022. I just passed the 1 year mark of ending chemotherapy. There was a residual diffuse area of concern for potential early recurrence that I had SBRT radiation for in April 2022, after completing chemo. Fortunately no side effects. It was 10 sessions total. No therapy since that time. Labs have been normal and I've had two ctDNA tests (at my specific request since it is not standard in approved protocols). Both were negative and scan has shown no change. My last follow-up was Oct 27th, 2022. I recovered completely from surgery, chemo and radiation and have felt 105%, felt normal energy, and living life fully and happily. However, my last test two weeks ago showed increases in CT19-9 (30s to 171) and CEA (from 1.4 to 4.5, same as before surgery.)

Major concern for potential early recurrence. Scan is unchanged, which is good and I'm waiting on ctDNA results to get the complete picture. Where I resonate most with you is the quality of life issue. My doctors have been clear regarding my priority being quality of life and very respectful with respect to outlining my options. If all else is stable, we will watch and wait, but if ctDNA is positive this time I am considering an immunotherapy trial of ELIl-002 at UC Hospital Anschutz (Denver) where I have received most of my treatment.

I would be very reluctant to undergo any more chemo. It was very hard and depressing even though I bounced back between treatments and fared better than most. My biggest concern is that outcomes are generally very poor to dismal and my quality of life for the past year has been excellent, so I might choose to ride out the rest and just keep quality of life uncompromised for as long as possible with palliative care if needed (not needed at present). Or I might do the clinical immunotherapy trial, which is likely to be less intrusive and debilitating than chemo, though it is impossible to know for sure.

Right now I am doing research and may reach out to Mayo for a second opinion on my options if the ctDNA is positive or scan changes. I am living my life realizing I very likely might only have 6 months to a year to live, but that I might also be among those who make it through that small keyhole of survival. Like you, quality of life is a key concern, but treatment has given me a wonderful additional year of life fully lived, so I really don't know what I might choose to do. Your situation is more dire than mine, yours being inoperable and Stage 4. But our concerns are very similar. I would like to hear more from you or others with these considerations around further treatment vs. quality of life for a potentially shorter time.