1. < Pancreatic Cancer

New Cancer Patient Managing Pain Issues

Posted by julie23 @julie23, Mar 22, 2023

I am 61 and diagnosed with pancreatic cancer in mid-January. I have had a long history with gallstones and kidney stones and was having what I interpreted as kidney stone pain through the past year. The new feature to my pain was that I experienced chest pain, which I told the doctors I saw reminded me of the pain that I had when my bile duct was blocked. The first time the bile duct pain concern I complained of showed in my chart was April 2022. It's nice that they checked my heart, but I'm still confused about why they didn't look at the bile duct until they did a CT for the kidney stones in December and noticed excessive bile duct dilation.

At any rate, they did a CA19-9 blood test at the end of December and it was really high. In early January, they did an MRI which showed a pancreatic head mass. They were going to wait to do an EUS/ERCP at the end of January but I pushed to have it done sooner so I was able to get it done in mid-January. The endoscopist could tell it was cancer at that time, but it took an additional eight biopsies to get confirmation. The mass is around 2 x 3 cm (I think since I'm American and on pain meds not sure of the metric conversion) but it has not spread. Two lymph nodes are working overtime.

When I was 54, I left my home state of Iowa to join the Peace Corps in Moldova for a brief time and then moved to Louisiana to attend graduate school. Call me crazy, but I wanted to see different parts of the world and I'm glad to have had the experiences and to have helped some people. I expected to work until I was 70 in order to pay for my adventures. However, I ended up with this disease far from my grown children and much of my family. I don't think it will work out asking them to come to support me for as long as needed. So far, they have been really generous with their time, but it will inevitably get more difficult for them.

I have had a lot of pain issues already despite the cancer being caught early. I had a sudden jump in pain severity after the first chemo but since it is cancer pain and not nausea/diarrhea it is not related to chemo. This week, after going through several weeks of severe pain accompanied by inability to really eat, I have been started on the patch pain relief. My main question for this post is really about the pain. It seems like it's unusual to have pain so early and I wondered

* does this bode poorly for my chances?
* my doctors have said that when the chemo has a chance to shrink the tumor, the pain should get better. Anybody have that happen?
* how do you know when you can get off the patch?

Thank you.
Julie

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krfinlayson | @krfinlayson | May 2, 2023

I had lost about 40 lbs prior to diagnosis of stage 3 pancreatic cancer. I had Whipple surgery with msv reconstruction followed by 12 folfirinox treatments. From surgery on I continued to lose almost another 60 lbs- I was skeletal. Over the two years since diagnosis I have been able to regain almost 18 lbs.
surgery is not fun, neither is chemo, or having to take digestive enzymes and insulin for the rest of my life, but at least I am here with my loved ones! Everything is a small price to pay for being alive! You can do this - wishing you all the best!

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mayoconnectuser1 | @mayoconnectuser1 | May 2, 2023

Re the starvation of cancer cells - while not a scientist, nor medical professional, it seems reasonable that both of these categories of highly educated, trained and experienced professionals would understand every possible method to defeat cancer. Something as simple as diet and caloric intake would be ... simple.
https://en.wikipedia.org/wiki/List_of_unproven_and_disproven_cancer_treatments

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 2, 2023
In reply to @julie23 "How It's Going I thought about making a new post with news but wanted to keep..." + (show)
@julie23

How It's Going

I thought about making a new post with news but wanted to keep this together in a "how it started" ... "how its going" way. I have completed 4 rounds of chemotherapy for which I was awarded a new CT! (think of Bob Barker on Price is Right if you want the humor part of that statement). I think it's a great result - no spread with a small bit of improvement. Unfortunately, I have lost 35 pounds over the course of treatment and am still struggling with dizziness and nausea. I still take a Percocet or two each day to manage breakthrough pain. I'm pretty weak.

The HemOnc suggested today after the CT review that we might be better off to do WIPPL surgery instead of the next four cycles of chemo, then move back to chemo after the WIPPL. Of course, this sounds like a good idea to me. I know the surgery will be hard, but I want so badly to get this cancer thing out of me. I will be meeting with the surgeon on Wednesday to hear what he thinks. I'm feeling somewhat celebratory.

Jump to this post

@julie23, I appreciate the update and keeping it all together in this discussion thread. I'd like to share in your somewhat celebratory mood.

As you prepare for Whipple surgery, you might appreciate this related discussion:
- Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

Good luck with your appointment with the surgeon tomorrow.

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gardenlady1116 | @gardenlady1116 | May 3, 2023
In reply to @krfinlayson "I had lost about 40 lbs prior to diagnosis of stage 3 pancreatic cancer. I had..." + (show)
@krfinlayson

I had lost about 40 lbs prior to diagnosis of stage 3 pancreatic cancer. I had Whipple surgery with msv reconstruction followed by 12 folfirinox treatments. From surgery on I continued to lose almost another 60 lbs- I was skeletal. Over the two years since diagnosis I have been able to regain almost 18 lbs.
surgery is not fun, neither is chemo, or having to take digestive enzymes and insulin for the rest of my life, but at least I am here with my loved ones! Everything is a small price to pay for being alive! You can do this - wishing you all the best!

Jump to this post

Thank you for sharing your story. Your courage is admirable.

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vlpr | @vlpr | May 4, 2023

I have Small Cell Lung Cancer. The pain is what helped to identify my cancer. If your doctors are saying that the treatments will reduce the tumor and thus the pain, I'd agree with them. One thing I found helpful is to use a palliative care doctor during my treatments. They were able to address my pain and provide solutions. The oncologists are focused on treating the cancer. The palliative care helped with any side effects.
I'd highly recommend getting a palliative care doctor. My oncologists put in the referral for me.
Please ask about it.
Hoping you can get some relief.
Vickie

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