New Cancer Patient Managing Pain Issues

No answers on pain, but thank you for sharing your story and I am impressed with your self advocacy, pushing for answers and moving your treatment along.

I have pancreatic cancer. Been through 8 rounds of chemo. The tumor has shrunk and the pain is less. I walk a lot and that might be helping.

I was diagnosed about the same time as you and before I started chemo I ended up with bile duct problems. A stent was put in to get the bile flowing and soon I was able to start chemo. I had a lot of pain issues early on and ended up in ER several times. I had 8 chemo treatments and then 15 radiation treatments then surgery was scheduled. Had to have the biliary stent replaced then had a CT to ensure I was ready for surgery. Had biopsy on bone and lungs and found metastasis in a few spots. Surgery was canceled. I still had pain issues and now I am working with a pain management specialist. She has helped me a great deal. Please stay on top of your treatments. Get ahead of the delays that can pop up. I am now on chemo to keep me going. Surgery is no longer an option. My wife and I are praying for a miracle and trusting God to do what we cannot. I’m praying for you and trusting God in your case also. Keep your family close. Mine has been a life saver.
May God bless you and see how you through this journey.

@julie23, I wanted to check in and see how you are doing and if your pain has improved. Have you had further chemo? Has that helped to shrink the tumor and reduce the pain as it did for @marciak9?

Sorry it has been so long since I posted this reply. I have been a little depressed about being sick for so long. One thing that is hard to describe to people is how expectations of life as healthy folks can interfere with feeling sick for months on end. I keep waiting for those "good days" and I guess I have them. But they fall far short of my expectations of what a "good day" should be. I have had two more rounds of chemo and am looking at the fourth round on Monday (4/24/23). After the fourth round, they will do a CT and I should have more information.

Pain has improved now that they have prescribed a long-term fentanyl patch. It was amazing to be pain free for periods of time. Made a huge difference in how desperate I felt. Still dealing with nausea, but it is easier to battle when you aren't deciding between feeling like a claw hammer is stuck in my back versus vomiting. Sometimes I just have to choose vomiting.

I've begun making plans with my family to move my treatment to Iowa and it is a lot. Over the past month it has become extremely clear that having a deep bench of support is really important. Thank you all for your posts - your replies here as well as on other posts. I appreciate you!

I am so sorry to read about how things have gone for you. How are you doing now?

I hope you and your wife are continuing to pray for a miracle and trusting God. I am adding my prayers to yours, hoping that even my little contribution will add up.

Thank you very much for your prayers. We continue to trust God for the final outcome. My oncologist placed me on a different chemotherapy that I am genetically qualified for. He said that less than one percent of pancreatic cancer patients have the required genetic markers. The new chemo is normally used on breast cancer patients but it has shown promise for patients like myself. The side effects seem to be worse than the other three chemo treatments that I had earlier in my treatment but we are thankful that I am able to try something that targets this cancer. We have hope in the Lord for complete healing and full recovery. Your prayers are more than little contributions. Thanks again.

Julie, I'm encouraged that the long-term fentanyl patch is working to get you pain free periods of time.

As for managing symptoms, mixed with exhaustion and depression, I'd like to tag @gingerw and @IndianaScott on this discussion too. They know first hand what it is like to need a deep bench of support and even with that support "how expectations of life as healthy folks can interfere with feeling sick for months on end. " Your choice of words really resonate with me.

I pray that you are surrounded by the presence of the Holy Spirit to give you peace. Keep trusting in the Lord. My husband was diagnosed in early Feb. with PAC. He is going through Folfironox but will have to have a reduced dosage as it put him in the hospital after only 4 treatments. We are also trying Metabolic Oncology - using High Dose IV VC and a handful of off-label Meds that show promise at helping to starve the cancer and weaken it so the chemo. can be even more effective at killing it. I would encourage you to read the Jane McClennan book "How to Starve Cancer". It can give you additional weapons against this disease and more hope.

Beth

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.