Success stories and working

I'm age 62 and 3.5 years into this pancan battle, now stage-IV; just "got retired" on the medical grounds last month because I've used up all my leave. I wasn't ready to leave, but not able to go back full-time either. Bottom line is that I've got long-term disability insurance (and Social Security Disability) paying 2/3 of my salary until I turn 65. They (SS and my employer) both have "return to work" incentive programs and trial periods, but the terms and conditions were very ambiguous. By accepting their leave conditions, my benefits are locked in, probably for as long as I'll live. If I had remained on (semi-) active status, even with part-time allowed, I could have been subject to layoff due to a downturn in business, and lost all the benefits. With 2/3 of my salary guaranteed by insurance+SS, I'd have to work more than 27 hours at my equivalent wage every week just to break even. Given my fatigue, I can't reliably do 27-40 hours of work and perform at the level that previously justified my salary.

My advice is to make sure you have all your work-related life and medical post-retirement insurance / benefits squared away for the foreseeable future; make sure all your estate-related documents are in order; then evaluate the options for all your potential spare time.

There are folks here who have far outlived the statistics and remain NED. My experience in the Stage-IV world, trying to navigate clinical trials amidst my fatigue and other issues that crop up, is that I'm glad I'm not trying to balance all this with the performance expectations and responsibilities of employment. If you're free of the full-time gig and not dependent on "disability" for income, you might find something else part-time you enjoy even more.

My other advice is to stay on top of your CA19-9, Signatera, and imaging tests so if anything bad crops up, you can be on top of it right away.

Just curious -- which drug(s) are you getting in your BRCA trial?

Best wishes to ya!

Thank you for your thoughts, @markymarkfl. The trial I am in is with the drug Olaparib. This site will not let me post the link, but here is what it says:

"The purpose of this study is to see if one year of treatment with olaparib is better than observation alone in patients who had pancreatic cancer surgically removed and who have mutations in the BRCA1, BRCA2 or PALB2 genes. Olaparib is a type of anticancer medication called a PARP inhibitor, which may slow down the process cancer cells use to repair their DNA. Cancer cells need to repair their DNA to survive and grow."

It is double blind so I do not know if I am getting the drug or placebo.

@bunky2078, is this the link to the study?
- A Phase II Study of Olaparib or Placebo in Patients with Surgically Removed Pancreatic Cancer Who Have a BRCA1, BRCA2 or PALB2 Mutation https://www.mskcc.org/cancer-care/clinical-trials/21-215

@colleenyoung Yes! That is it. Thanks for adding the link.

I went back to work full-time after my Whipple as I was looking to have normalcy and a daily routine and never regretted the decision. Metastatic disease was found throughout my liver seven days after the Whipple that included a portal vein resection. Metastatic disease was micrometastatic when I had the initial diagnostic scan…too small to be detected in 2012 as the resolution of CT was not what it is today.

I went to work every day all through chemo never missing a day. During treatment for the metastatic disease, genetic testing was done identifying a BRCA2 mutation and I became the first patient enrolled in the US into the RucaPANC PARP inhibitor trial. I had a complete response to the drug and currently the longest former pancreatic cancer patient in the world on Rubraca (Rucaparib) at 10 years 8 months. Although I have been declared cured by leading pancreatic cancer oncologists in the US, it was left up to me as to whether ai wanted to continue taking the PARPi. I opted to continue as having a (g)BRCA2 mutation increases my risk for male breast, prostate and a new primary pancreatic cancer in the remnant pancreas. Rubraca is well tolerated and has provided an excellent quality of life.

I am now retired from clinical research in cancer, immunology and stem cell research and busier than ever in my volunteer activities as a research patient advocate for pancreatic cancer on a number of national non-profit cancer research organizations, foundations and advocacy organizations attending frequent oncology meetings and having the opportunity to make presentations at them. I am also involved in providing input on the development of clinical trials for pancreatic and other solid tumor cancers of the GI tract.

I know this study well. My colleague at ECOG-ACRIN GI Cancers Committee Kim Reiss-Binder MD of PennMedicine is the P.I. overseeing the trial and Eileen O’Reilly MD at MSKCC is running the trial there.ni was just at the Spring ECOG-ACRIN meeting last week where Dr.Reiss-Binder gave a status update on this trial.

Thank you, @stageivsurvivor! I appreciate your insight.