Pancreatic Cancer Group: Introduce yourself and connect with others

@gretchenb
I had Y90 procedure. If you have questions feel free to reach out!

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?

That was incredibly helpful, thank you so much!

I lost a long response when I finally hit “reply”. (At my end, Spectrum lost service.) But I’ll circle back, saving my work before uploading. I am certainly inspired to share if it can be at all helpful to others.

Truly appreciated, thank you!

@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. 🙂

My stage IV pancreatic cancer was discovered “incidentally” already all over my liver six months ago. Treatment (cisplatin and gemcitabine) seems to be working, slight shrinkage on CAT with massive drop in CA19-9. I stopped losing weight and feel embarrassed to have put almost all back on, but I was very anxious to eat as much as possible.

I think it’s important that I have a BRCA2 mutation.

I’m a little confused coming here, because my CA 19-9 numbers dropped from 45,000 to 1,000 over five rounds of chemo, yet 1,000 is apparently still awfully high judging by comments here? The reference range is 0-35 U/ml, but I assumed that was simply for people without cancer.

Does this mean my cancer is still very busy? Is there any sense in which it is only 2% as active as it was if my CA19-9 levels dropped that much?

Current protocol is chemo prior to surgeries unless disease is likely in pancreas only (scans, CT DNA tests, etc I was stage IV to liver. Many tumors there. After significant shrinkage due to chemo in both liver and pancreas, I was allowed Y-90 to liver which resulted in necrosis of the liver tumors and got me to a pancreadectomy. So far, one small tumor arose after in my liver which was removed after rounds of gem/abraxane.
Feeling good, working, on maintenance dose of Gem and watching scans and tumor markers closely. Until we have a tools that can turn off the mutations, most of us stage IV patients are in watch and “wack a mole” phase. Praying some of these phase 1 trials can move through and be a lifesaver for many of us soon. The vaccine is also very promising for some.
I am currently in watch mode for a small node in my lung. I panic, then I seek second opinions for data, make a treatment plan, then just pray and work hard loving everything around me in my life. Oh-and tediously setting priorities on each day to not get lost in the tedium of life and miss all that is good that I can maybe even still effect!

This is so good to hear! I will look for your blog today.

So glad you are NED! And yes, these stories must be out there!!

I feel the exact same way, I'm never afraid or embarrassed to ask any questions as it relates to my husband's journey. Every single person here has been so helpful. This group has been a source of comfort and knowledge and I'm SO grateful to everyone.

Hello,
My husband was diagnosed in April of 2023. We thought it was stage II at first but when they went in to do the distal surgery they found studding in the liver. They aborted surgery and he is fighting the disease with Chemotherapy. He was able to complete 18 cycles of FLOFIRINOX, 8 cycles of FLOFIRI, and has now transitioned to Gem/Abrax- first cycle today. His main tumor has remained stable this whole time, but he continues to get new liver spots. He is having a consultation for the Y90 procedure tomorrow.

I am always seeking out new information to help us prepare for all the ups and downs that have come with this diagnosis. I never have a dumb question anymore, not when it is about my husband's health and healing. This is such a scary disease, but we find there are so many positive stories around survival too, we seek those experiences out and it helps us keep our spirits and fighting drive strong.