Liver transplant and CKD, now husband diagnosed with pancreatic cancer

Welcome, @smithpamelag. You and your husband are no strangers to complex health journeys. I'm sorry that you are now facing pancreatic cancer. Fellow members have talked about chemotherapy and kidney disease in these related discussions:

See these two related discussions:
- Chemotherapy and Dialysis: Looking for others who have had both https://connect.mayoclinic.org/discussion/chemotherapy-and-dialysis/
- Kidney function and medications https://connect.mayoclinic.org/discussion/kidney-function-and-medications/
- Chemo with bad kidneys? https://connect.mayoclinic.org/discussion/helo-chemo-with-bad-kidneys/

How did you appointment with the oncologist go? What chemotherapy will your husband be getting? How are YOU doing?

Thank you for your reply. The appointment with oncologist went well. He spent 50 minutes with us explaining treatments and answering our questions.

Since my husband has liver transplant in 2021 he gets quarterly scans and CA 19-9 labs. They started climbing last year but nothing was showing up on scans. His CA 19-9 was 10,200 on June 14 and is now 15,000+ 9 days later when they took again. So while imaging isn’t showing much some tissue samples taken when they did an endoscopy by pancreatic head came back cancerous. They are going to redo an MRI and PET scan to get proper staging. It’s obviously hiding somewhere.

Chemo will start 7/9 and they recommend the two drug combo of Gemcitabine and Abraxine. He’ll go weekly for three weeks and then have a week off. And repeat cycle twice more so total of three months.

He mentioned the option of a four drug combo but was concerned about it being hard on him and didn’t want him to end up in the hospital.

It is good to know we have a plan now and looking forward to updated scan image results.

@smithpamelag, I moved your message into a discussion of its own to help connect you with other members dealing with cancer as a transplant recipient like @malel17 @beracha @kim1965 as well as members who have CKD like @gingerw

You may also be interested in this discussion:
- Anyone on Gemcitabine with Abraxane? How long? Effective?https://connect.mayoclinic.org/discussion/gemcitabine-and-abraxane/

Sending you thoughts as you wait the next few days for the start of chemo. Is he eating well?

It took them a few biopsies to find the cancer. Dad did 5 months of immunotherapy trials. They just stopped in June, his cancer is now in pancreas and liver and started in the duodenum. Best wishes and big hugs. Our dad is 83.

Thanks Colleen, appreciate that additional exposure and will see if others comment. We had MRI last Friday and tomorrow is PET scan. As for his diet, he doesn't have much of an appetite and sometimes only takes a few bites and then is just done. With his complex medical background, and things hurt or ache its hard to know if related to the cancer or something else.
Chemo starts 7/9. Last CA 19-9 on 6/24 was 15,667.

Hi @smithpamelag
Our story (short version) :), is the wife was diagnosed with NETs April 2022, 9 cycles of CAP/TEM, Surgery to remove primary on pancreas, ablation on liver as much as they get, remove spleen, and gall blader. Moved to PRRT treatments to try to get the rest, and we are looking good, but NET's is still in the liver. Presented by Medical team an option for a Liver Transplant, to try to isolate and hopefully get all of the NET's out of body, with transplant. Although, we understand there is no guarantees. Had transplant in January 2025, and it has been very tough on her, with multiple returns to hospital, additional surgeries. The moral to our story is to keep fighting this cancer, have a good medical team that you trust, and we are here to talk to with any questions and we will try to share our experiences if that will help you and your husband. You both got this, and we all got you!

I am so glad you are getting the best help possible. Cleveland Clinic and Mayo are the two best in the world. Best of luck with the chemo (---: . Hang in there ! Prayers up to your husband and to you as a caregiver.

@smithpamelag I know it must be so difficult for you and your husband right now. As @craigcraig mentioned, being seen at Cleveland Clinic is a real plus!

One thing I can really and truthfully say, is to make sure your different specialists are conferring with each other. That's critical, as you make decisions in the near future, for treatments. You haven't mentioned the primary cause for your husband's CKD, so everything will need to be taken into consideration. What is his eGFR at this point? My oncologist and nephrologist are in regular communication to team with me and make the best choices for treatment. BTW, I am on daily dialysis for kidney failure, and under treatment for multiple myeloma [one is not connected to the other].

As for his poor/no appetite, small meals often may work. Protein-rich like a egg, or some Greek yogurt, or a protein smoothie might appeal to him? I make my own smoothies with mixed fruit, almond milk, Greek yogurt, and protein powder. At some point, it's going to be "whatever appeals to you right now", and that's okay too, dietary guidelines be darned!

Thanks for these comments! His current eGFR is 35. He’s a liver transplant patient as well and his liver team is very aware of what’s going on and any time he’s in hospital they are there checking on him. I don’t really know what caused his kidney episodes I do know that the anti-rejection med is hard on kidneys too. He has regular appointments with the kidney team too. In fact we have a video visit Thursday morning.

He had his PET scan today. Looking forward to what the team says once they review the new imaging. With the holiday weekend creeping up on us we might not hear until next week.

Thanks for sharing your story @kim1965 - I'm not familiar with acronym NET. The medical field is full of them isn't it. My husband had cholangiocarcenoma (bile duct cancer) in 2020, his liver transplant was Feb 2021. It hasn't been an easy road that's for sure. He also had shingles Jan 2024 and is left with the nerve pain since then so the constant pain definitely wears on him. I'm concerned he doesn't have a lot of fight left in him to battle this. I told him the other day that I've been through it with him before and we will battle this again. Our son had testicular cancer a year ago as well, so feel like we're on repeat - here we go again...although this feels like it will be a much longer battle.