Pancreatic Cancer Group: Introduce yourself and connect with others

@lucanus Hi and welcome to Mayo Connect. What is PDCC?

I was diagnosed with PACC in January and had a distal pancreotomy and splenectomy in February.In April metastases appeared in my liver. Folfirinox failed but GemCis was successful and I'm still on this. I am looking towards Rubraca next so would like contact with someone on similar path. BTW, the drug is USD4000 a month(!) so any ideas about how I can source this more would interest me. An Indian company makes a generic version but won't divulge the its efficacy compared with the original.

Hello - I have been following this site since around April 2023. My husband was diagnosed then with 1A PC. Confined to pancreas - 2 cmm tumor. He went through 5 months of FOLFIRINOX and then had the Whipple in October 2023. Margins came back clear with a NCR to chemo. We have been sailing for 2 years with clear scans. Last week we went in and he had what appeared to be clear scans but his CA-19 test came back very high. This blood test for him has NEVER been elevated, even when he started out with PC. Our oncologist is ordering new PET Scan to look for early reoccurrence. The only thing that looked suspicious was a lung nodule had increased by 1 cmm from scans 6 months ago. Has anyone had any experience with this? Looking for any feedback.

@dyas
I am a romantic. All well and good for me but far more is needed. So I asked Sally. Sally felt VALIDATED. The doctor and Research Study Coordinator confirmed Sal should be asking the questions she had and she should be given answers.

I'm sorry your cancer advance to stage 4. It's a terrible disease. Wish you the best with treatment.

@jim1234 I agree as I started at stage 1a and now stage 4 due to mets to Omentum. Just want time. So sad for all of us with pancreatic cancer.

@mnewland99 That will be my new chemo regimen. I already lost a lot of weight and dread the loss of appetite. Thank you for posting!

@ardithbjorge, I'm glad you received a helpful reply from @demooretucson before your initial visit.

I can imagine you're concerned about the lesion they found on your lung. While I understand the anxiety, it is good they found it so you'll know what you're dealing with.

I appreciated getting your update and wait to hear about the results of the bronchoscopy.

@colleenyoung My name is Ardith Bjorge. I was diagnosed in August. I just returned from Mayo Clinic Rochester to obtain more information. The only spread they found was a possible spot on a lung, which could be a nodule from my bronchiectasis disease. So this week I will be undergoing a broncoscopy to determine if it is cancer before possibly starting chemotherapy next week.

@bobs1973 With your Mother having been diagnosed and passing from pancreatic cancer, did you or your Mother ever get tested to see if there is the presence of a germline mutations?

As for testing of offspring, the NCCN and ASCO guidelines do not recommendation testing until they become adults. Testing is recommended by NCCN and ASCO guidelines 10 years before a parent was diagnosed with pancreatic cancer. Should an offspring be confirmed as having a germline mutation, during the consult with the geneticist, a recommendation on frequency and type of surveillance that should occur.

Before anyone chooses to be tested, if a life insurance policy is not in place and it is of concern in having one, it should be taken out before mentioning to the policy provider about genetic mutations as it could result in denial of coverage or very high premiums with limited coverage if mutation status is made known.