Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you again, let me see what I can add:

My oncologist said he didn’t want to start with abraxane too, and I didn’t press him on it. I have to say that “just” gemcitabine and cisplatin has not only apparently been very effective, it has been very easy to tolerate. I’ll ask if that was his consideration, but I did want to share that treatment has been easier on me than I expected.

There was a two month delay between discovering I had stage IV PDAC and getting treated, and that was far harder on me.

The plan is to switch to maintenance with a PARP inhibitor soon. Thank you for raising the possibility that I shouldn’t dawdle because resistance to the one might be related to resistnce to the other, I’ll ask when I meet my oncologist again in a week. That raises the whole question of why people are so excited about PARPi, which I hadn’t started thinking about yet. Is it because it is easier to tolerate, less likely to develop resistance, or something else I hadn’t thought of?

I guess there are non-obvious issues around getting a biopsy, so I’ll share that I had to press to get one. It still doesn’t make sense to me, but my first oncologist seems to have more or less felt it was obvious what I had and too late to do much about it. I assumed that genetic testing of the tumor was the whole point, but they apparently never planned to do that, and hadn’t mentioned that biopsy by fine needle aspiration might not provide enough material for it. “Pancan.org” did get a sample from them and was able to run their panel for me, confirming in my case that BRCA2 was the only “actionable” mutation.

I am apparently very lucky to have this version of PDAC, since it is responding very well to a relatively recently developed protocol.

Be well everyone!

I was diagnosed October 22, 2022. I had the whipper procedure January 11, 2023. But I am having a nightmare and a rollercoaster with my digestive system and eating. I have to stop eating a lot of healthy foods. I get nausea, fatigue, lightheaded, belching, rectal leakage with poop, urine leakage, burps, dizziness, weakness, exhausted, acidic taste, vomit, stomach pressure, etc.

Can also research the POLO trial which was a research trial of PARP which seems to be the trial which got FDA approval for the drug. This is a scientific paper describing the trial. Give a try at reading it and then try searching POLO trial on Google, might come up with something else.
https://www.nejm.org/doi/full/10.1056/nejmoa1903387

That’s wonderful news kjrita! I always like to hear about survivors! Which mutation did you have? ATM, KRAS12D?

@gamaryanne were you stage IV when they decided to operate? We were told that was off the table now but although he has had some progression in his liver, the pancreatic tumor has remained stable and his CA19-9 has never been above 400. We struggle to accept he will never be able to have surgery.

CA19-9 tracks well for some, not so for others. But overall it is the trend that matters. Mine is taken every two weeks and I do wait with anxiety to see each posting. However, I have now, since being diagnosed stage IV 11/2021, learned to plot points on a graph with each reading. The professionals look at the TREND. Yours is GREAT!!! Give God thanks and continue to do what you are doing, stay as healthy as possible, while staying on top of research with your doctors for next steps.
Mine was very high. Told I
was inoperable. Once my trend line was overall positive, I saw new physicians. They were willing to think out of the box. I’m still here and feel great after 3 surgeries and bi-monthly chemo. So give thanks for this downward trend and the options it may open!!!!💜

@gretchenb, I love your phrase "I never have a dumb question anymore, not when it is about my husband's health and healing." You're so right. There really are no dumb questions. Welcome.

There are several discussions about Y90. Here are a few links that you might find helpful:
- Radioembolization for pancreatic cancer metastasis to liver?
https://connect.mayoclinic.org/discussion/radioembolization/
- Y-90 liver cancer treatment
https://connect.mayoclinic.org/discussion/y-90-liver-cancer-treatment/
See all https://connect.mayoclinic.org/search/discussions/?search=Y90

How did the consultation for Y90 go?

@pdacbrca2 ,

CA19-9 is a helpful indicator but can't be taken as the only indicator. Fortunately it's an inexpensive test that can be performed often to provide insight into your cancer response.

In my case, Stage-IV treatment on cisplatin + gemcitabine + abraxane brought CA19-9 down by about 95% for a while (from around 677 to 34 on one test) with only a slight reduction in tumor sizes on MRI.

My non-medically trained understanding is that the cancer cells can be driven into a "senescent" state for a while; not dying, but not reproducing or spreading either. This is considered "stable disease" and is not a bad place to be. 🙂

Of course "imaging is king" of the non-invasive testing methods, but is also only a single set of eyes that can't see everything. If you had any kind of biopsy taken, you might be able to have the tissue sent to Natera for creation of their "Signatera" ctDNA (circulating tumor DNA) test that can be done repeatedly as you undergo treatment. It provides a quantitative measure in "Mean Tumor Molecules per unit of blood" that is a more direct measure of cancer activity in your bloodstream.

Note however, that this is also only a measure of cancer cell DNA in your bloodstream, and it may not be present in detectable quantities there if your tumors are not shedding it there (possible depending on the vasculature or the senescent state).

At lower tumor burden levels, experience in my case has been that CA19-9 provides a more fine-grained check than Signatera, but this is not the case for everyone. Signatera has failed (below threshold) to detect ctDNA when CA19-9 was rising. But when CA19-9 rises enough, Signatera usually agrees (detects molecules above threshold) and provides more specific, confirmatory evidence of cancer activity because the test is tuned to look specifically for ctDNA matching that from my tumor tissue sample. It's just another set of eyes looking from a different angle.

While a CA19-9 of 1000 level is concerningly high and may rule you out from surgery (as your Stage-IV status probably already has), the drop from 45000 is awesome and suggests your current treatment is providing pretty good control. There is still room to add Abraxane to your Cis+Gem regimen if your oncologist thinks it's appropriate.

Your BRCA2-positive status also suggests you might be a candidate for (maintenance?) treatment with a PARP inhibitor (probably as a monotherapy but possibly also in conjunction with something else). This could be a valuable option if you develop neuropathy, anemia, resistance to the current regimen or any other problems with it. One piece of research to stay on top of: I've lost the links, but I read once that it _seems_ PARP inhibitors might lose their effectiveness around the same time you develop resistance to the platinum drugs, so you (and your oncologist) might want to time a switch to occur before that happens.

I wish you all the best and hope you'll share whatever else you learn back here. 🙂

@pdacbrca2 ,

CA19-9 is a helpful indicator but can't be taken as the only indicator. Fortunately it's an inexpensive test that can be performed often to provide insight into your cancer response.

In my case, Stage-IV treatment on cisplatin + gemcitabine + abraxane brought CA19-9 down by about 95% for a while (from around 677 to 34 on one test) with only a slight reduction in tumor sizes on MRI.

My non-medically trained understanding is that the cancer cells can be driven into a "senescent" state for a while; not dying, but not reproducing or spreading either. This is considered "stable disease" and is not a bad place to be. 🙂

Of course "imaging is king" of the non-invasive testing methods, but is also only a single set of eyes that can't see everything. If you had any kind of biopsy taken, you might be able to have the tissue sent to Natera for creation of their "Signatera" ctDNA (circulating tumor DNA) test that can be done repeatedly as you undergo treatment. It provides a quantitative measure in "Mean Tumor Molecules per unit of blood" that is a more direct measure of cancer activity in your bloodstream.

Note however, that this is also only a measure of cancer cell DNA in your bloodstream, and it may not be present in detectable quantities there if your tumors are not shedding it there (possible depending on the vasculature or the senescent state).

At lower tumor burden levels, experience in my case has been that CA19-9 provides a more fine-grained check than Signatera, but this is not the case for everyone. Signatera has failed (below threshold) to detect ctDNA when CA19-9 was rising. But when CA19-9 rises enough, Signatera usually agrees (detects molecules above threshold) and provides more specific, confirmatory evidence of cancer activity because the test is tuned to look specifically for ctDNA matching that from my tumor tissue sample. It's just another set of eyes looking from a different angle.

While a CA19-9 of 1000 level is concerningly high and may rule you out from surgery (as your Stage-IV status probably already has), the drop from 45000 is awesome and suggests your current treatment is providing pretty good control. There is still room to add Abraxane to your Cis+Gem regimen if your oncologist thinks it's appropriate.

Your BRCA2-positive status also suggests you might be a candidate for (maintenance?) treatment with a PARP inhibitor (probably as a monotherapy but possibly also in conjunction with something else). This could be a valuable option if you develop neuropathy, anemia, resistance to the current regimen or any other problems with it. One piece of research to stay on top of: I've lost the links, but I read once that it _seems_ PARP inhibitors might lose their effectiveness around the same time you develop resistance to the platinum drugs, so you (and your oncologist) might want to time a switch to occur before that happens.

I wish you all the best and hope you'll share whatever else you learn back here. 🙂