Pancreatic Cancer Group: Introduce yourself and connect with others

@mamarina as I sit in the waiting room for the results of my recent PET scan, I know how you feel!
I had Folfurinox 12 rounds, then while waiting for approval of Y90, two more.
I am on no other meds now except I do take creon since the pancreadectomy. It has helped normalize my GI system if you know what I mean!
I am intentional about my diet although my appetite has returned and I have eaten more dark chocolate😊. I am very cautious when eating high fat. If I do, I am sure to take creon in advance. And of course, alcohol has all but dropped from my palate. Would be happy to talk directly if you would like.

My information is that only 20% are suitable for surgery as initial therapy. In my case, I have been given a diagnosis of borderline surgery, meaning that the neoadjuvant (before surgery) could make it possible for surgery to be performed. It would be nice to not need the chemo before, knowing that after surgery, I would still need to have more chemo. So being able to have surgery initially would seem to me like it would be likely that less chemo is needed overall. A blessing indeed.

Gamaryane
I have state 3 dx april/22. I have done gemcetibine/ abrazane stopped in Aug and proton radiation last week of Sept
Which brought my ca9-19 to normal
Surgery not an option.
May I ask what treatments youve done
I also have dueodenal stent and biliary stent and having some issues with digestion etc. and discomfort
any info or advice would be helpful. Im nervous … Im due for more scans in 2 weeks.
Thank you

Do you think the symptoms are from the treatment or from the illness? How is your overall quality of life right now on a 0-10 scale?

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.

Thank you so much gamaryanne for your detailed reply.
I have stumbled on some of these strategies to some degree, but it is very helpful to know that they have worked for you, and to have specific recommendations.
Last night, for instance, I sent a list of 8 questions to my oncologist who has so far shown herself to be practicing her specialty strictly according to "standard of care," leaving me to discover a lot the hard way - no mention of "chemo brain" or "chemo hand-foot syndrome" for example.
I've found that the nurses who care for us are excellent resources as repositories of what patients say has worked or not worked for them!

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.

Your last line resonates with me, thank you.

Stay BUSY, enjoy life to fullest extent possible.

I was diagnosed stage IV Adenocarcinoma 11/2020. Shocked and stunned as I was very healthy, working full time and moving a mile a minute! After the shock and sadness, I remembered that God did not say we would not have pain in this world. But He does give us tools to manage it. Would I choose fight or flight? What would my children and friends learn from this? I chose fight. With a second opinion we mapped out a plan. I jumped in it and kept my life going forward. My tools to fight:
1). 4 extremely deep long breaths several times a day
2) never sit longer than two hours from 8-7(except during chemo!)
3) do something every day that is about someone else(write notes, say hi, offer help)
4) get your affairs in order
5) eat your protein, listen to a dietician to fortify yourself
6)Be still with God each morning and give thanks
Be sure to get a second opinion. My attitude to be one of the 12% has led my team of doctors to think “out of the box” for me and I am so grateful. I am still working, volunteering and managing my treatments and RESTING. Don’t give up!

ajh,

My sister is at month 12 from diagnosis. She was borderline resectable, but even with neoadjuvant chemo and radiation managed by Mayo Rochester (constant folfirinox chemo therapy followed by radiation to shrink tumor) the cancer spread before a Whipple could occur.

First decision is - chemotherapy or not?

She did not do things she wanted to do, mainly because there was a chance of life extending surgery. If she had not believed there was a chance of life extending surgery, she likely would have integrated some chemo approach with travel, relatives, whatever made her happy.

A decision could be made to forgo chemo and enjoy life as much as possible.

I'm trying not sound defeatist, but after spending months organizing my unmarried 65 yo sister's estate and financials as she declined, I think I would advise in depth, careful estate planning, simplification of financials including automatic payments and deposits, investment changes to better provide for children, etc. Trust, Will, DNR, Healthcare Surrogate, Durable Power of Attorney, specific instructions, user name and password listing ... coordinate everything.

Stay BUSY, enjoy life to fullest extent possible.