Question about CT scan

Not logical at all! In my first round with PDAC and 6 months of chemo, the tumor never changed size much on MRI, but the meds were having some impact on it. After removal, pathology confirmed some of the tumor tissue was killed by the chemo. (So the "living" part of it shrunk a little bit.) But my CA19-9 numbers never really improved.

Since the recurrence and 4 months' treatment with a different chemo, the CA19-9 numbers are improving rapidly, but last week's MRI showed no reductions in size plus a possible new tumor. I had no symptoms when it was caught (still don't) and am tolerating the chemo very well.

Sometimes chemo before the surgery is used not only to treat the disease, but also to determine which patients may benefit from surgery. Even if a single, resectable tumor is not shrinking on MRI/CT, as long as it doesn't spread, they'll know it's treatable and responds to meds. Very often, pancreatic tumors have spread microscopically beyond what imaging can detect. Surgeons know this, and don't want to put you through surgery if it won't help in the big picture, especially since it would delay your resumption of chemo/immunotherapy after surgery. Distant metastasis will probably rule you (your Mom) out as a candidate for surgery, but stable or slight increase in tumor size at one site may not.

Wishing you and her the best!

Just curious: Do you have details on exactly what type of cancer it is, what the driving mutation/fusion is, and what drugs are part of the trial?

Thank you for sharing your story. I always learn from the stories people tell. It has helped me to understand better the wide range of experiences people have with pancreatic cancer

Hello @gardenlady1116

I noticed that when you first posted, you mentioned having a lot of weight loss and that you were trying to build up your strength. How is that going? Are you feeling stronger now?

I seem to be stabilizing my weight with higher doses of Creon. I lost a lot of muscle. I am able to do things like mow my lawn. I have to slow down on the heavy duty gardening work, one bag of mulch only at a time. I have to make myself stop, rest, hydrate and have a snack. When I started to become more physically active, I dropped some weight. Have had to learn to eat more with the increased physical activity. I also find that my strength is less right after a cycle of chemo. This season is usually my season, getting out in the spring and getting the gardening going so it's disappointing to not be able to do as much as I would like, but grateful I can still manage to enjoy the garden work that I love so much

As a stage 4 survivor I emphasize with all who have this challenge and especially those who are close to the patients. Everyone in my immediate family died from various cancers, and I have experienced five types thus far, and there is suspicious activity in my lungs. Some of the chemo meds have been cardio toxic. But, I am here and living a good and active life at age 81. If I may offer my "secrets"..... I start every day by giving thanks for another day of opportunity. I am blessed with a great medical team. I pushed myself to get in good physical condition prior to Whipple (Feb 2022). I continue to exercise every day. I follow the optimum diet for pancreatic. I play an active role in my treatment. I'm on chemo for possibly the rest of my life. I stay hydrated (difficult to do!) Crazy perhaps, but I talk to my body. I refuse to give up. Because of all the advances in cancer treatment I know if I can "hang on" for another 4 years there will be an actual cure!

Your story is an inspiration!! Can you share some details about the diet you follow. I have been mainly focusing on the Creon dosing at the moment. This has greatly improved my quality of life. I have gone from 145 lb to 108, finally stabilizing my weight. Surgery scheduled for June 21st. Probably can't gain much weight by then but hope to be able to get myself in better shape nutritionally now that my Creon dose seems to be high enough to relieve my miserable symptoms of gas, frequent bowel movements which have made it it difficult for me to get out and enjoy life more.

Yes, please share the diet you have been advised to keep for pancreatic cancer.
My Dietician’s primary advice is protein-from many different sources

In general terms we do a balanced diet low in processed foods, low fat and sugar, zero alcohol and high in protein. Eat breakfast every day: raisin bran with skim milk. I take multi-vitamins plus supplements of iron, B-12, B complex, C, D and folate. Some of those have consumption limits, and your dietician SHOULD be able to advise. If not, your doctor or pharmacist can. Exercise is critical for proper absorption. Another reason for exercise is cancer does not thrive in oxygen rich environs. Some supplements require some sun for best results. Suggest checking WebMd and JohnsHopkins sites for more pancreatic diet info. Hope it helps! If taking Creon or other enzyme I have learned to fine-tune the dosage and how to take it.. BIG help with some of the unwanted poor digestion side effects!