Pancreatic Cancer Group: Introduce yourself and connect with others

Marci, is the surgery you turned down the Whipple? Just curious about your thoughts and decisions. I know that I struggle sometimes on future treatments and direction to take on many things. I usually read about what people decided to do, but not so much on how they came to pick their decisions.

thank you

Hi Roseisarose nice to meet you! So sorry for your troubles. You’ll find a lot of friends here that hopefully you’ll find comfort.
I had Dr Truty and he said I was a candidate for surgery even though there was artery involvement but I declined. I’m61 and life after that kind of surgery would have been awful. I’m doing really well with no aggressive metastasis. I was diagnosed October of 22.

Hello, I was diagnosed in March of 2022 with a pancreatic adenocarcinoma. After 7 rounds of folfirinox and 28 radiation treatments, the surgeon said I was not a candidate for the whipple surgery due to vein and artery involvement. In December of 2022 I went to mayo clinic and saw Dr Truty. He too said I was not a candidate. While I was there I had a stent placed in the portal vein. Since that time I have continued on folfiri as the oxiplatin was causing neuropathy. I took a two month break from chemo in the spring. During that time I developed a small watermelon sized mass on my ovary. It was removed in September and they discovered I had perineal carcinamatosis. My most recent scan showed things were stable, except for a blood clot in the stent. So as of now I am stage four without signs of progression. I will continue with chemo in the hope it will keep things at bay. I am worried about the perineal tumors, but I try to stay positive. I have found cannabis helps a lot with mood, pain, nausea, and appetite. Thanks for allowing me to be a member of the group. I am sixty five, female and in good health except for the cancer.

@hubby11 , Given the data you present, I totally understand being terrified.

I can't put a good spin on everything, but I discovered the back pain I experienced around the time of my diagnosis was just muscle knots worked out by physical therapy and massage.

There's another poster here whose friend started off in terrible health with CA19-9 of 33,000 in (I think) August, then had a terrible reaction to chemo (Folfirinox), his port got infected, and the... they switched him to arm IV's for a while and G+A chemo. His CA19-9 dropped to 3,000 in October, and down to 300-something in November. We haven't heard new details since then because the OP came down with cancer herself, but part of the thread is archived here: https://connect.mayoclinic.org/discussion/ca-19-numbers-continuing-downward/

With my recurrence, CA19-9 was up around 700 and original tumor metastasizing by the time I got 2nd & 3rd opinions and resumed chemo on a regimen that was supposedly less effective than my original (which wasn't very effective). But it came back to normal within a couple months. The tumors have been stable for most of a year, with a few getting smaller and I've been living a decent life.

With the numbers and growth rates you cite, there's probably not much time to "shop around" before starting a systemic SoC chemo regimen. This might just be an issue of getting things under immediate control first, and then shopping around a bit after you see how she responds. Don't let that stop you from asking questions and seeking referrals though.

Despite all the whiz-bang treatments you read in the news, I've asked several doctors (regarding my own disease and that of other family) what they would honestly do if it were their spouse or child with the same disease, and it's the same answer we got for our selves and loved ones.

Hang in there @hubby11. I won't be the only one here praying for you.

Thank you to all. My prayers for all of you in your continued fight and wishing everyone health and happiness.

The oncologist we are currently seeing is board certified and according to his bio he was trained at Sloan Kettering so that makes me feel a little better. Obviously if we get bad news from the biopsy we will be getting another opinion.

3 things scare me the most:

1). Her weight loss is so dramatic in just a month - probably over 12-15 lbs. Also what was once just pain on her left side and back is now pain in her abdomen and chest at times. Sometimes she says it’s not bad - but she has a pretty high pain tolerance. So when she says it really hurts, I know it must be pretty bad.

2). Everything I have read has mentioned poor prognosis for CA19-9 over 3,900-5,000. Hers was over 43,000…. around 10 times what I’ve seen as being “poor prognosis”.

3). The first ultrasound in December showed 1 lesion on the liver of around 2.3cm. By early January the fibroscan showed it up to 2.8cm and a 2nd lesion not present in the first ultrasound of 2.1cm.
Now the MRI done 1/23/24 shows pancreatic body mass of 4.6 x 2.5cm, multiple liver lesions with a 3.5, a 3.0, a 2.7, and “additional smaller lesions”.

I’m terrified.

Thank you.

I don’t want to leave out anyone that replied and gave “hugs” so I’m putting a general reply to all below.

@markymarkfl
Yes-I did mean capcitabine(Xeloda)

Cisplatin was on my mind as someone had just advised me it’s found to be an effective match for some genetic mutations but not mine.

@hubby11
So very sorry to read this. Stage IV are words no one is prepared to hear. I heard them 11/2021.
Dittos to all @markymark shared. The biopsy to liver will confirm the pancreatic cancer without going to the pancreas. Quite surprised they would say no surgery with tumor lying in body. However, curing/stabilizing the disease is the first priority. Systemic chemo is the only available way to do this right now.
I can tell you my situation was similar. Tumors in my liver were the mass of a baseball! Through system therapy and an interventional radiation procedure, they shrunk and most died to the point that I was able to have liver resection. To get to surgery took time and lots of chemo! My pancreas surgery was 12/2022 and my liver surgery was 2/2023.
With your wife’s other conditions they will monitor closely. At a good center, chemo doesn’t have to be too awful. They will give her pre-meds to lessen the side effects and she will have days of fatigue. But it doesn’t have to limit her from most of her daily activities IF she has the will to live and to fight! My thoughts-start chemo immediately and confirm both tumor and genetic testing are underway. May God bless you as you start on this journey💜

@hubby11 , The liver biopsy sounds sensible to me (with no medical training) for that purpose.

It won't hurt things to get a chemo port, but it doesn't mean she has to use it right away. Nature (cancer) has a way of rushing patients into decisions they don't have time to research and digest.

I would suggest you contact the Pancreatic Cancer Action Network ("PanCan") at https://pancan.org/ and ask them to set you up with a counselor / advocate / case worker. They are a good source of advice about many things including clinical trials.

You might also reach out to Cancer Commons at https://cancercommons.org/
They also have some good insights and links into clinical trials.

Both of them might only have generic trial info available at first, and then refine that after you start getting results about mutations from the genetic tests. But you'll have to keep your own eye out for those that aren't mutation-specific or on the radar of your current medical team.

Some trials are not mutation-specific, so they might be overlooked in a search that's too targeted. The bigger research institutions have more going on within their own campuses and more awareness of what's going on elsewhere, which improves your odds of finding an appropriate trial, which might be easier on the mind/body and/or more effective as a treatment.

If SoC chemo is the first route taken, be aware there are many, many strategies to minimize the misery, so feel free to search the old posts here or make new ones. Docs can test before starting to see if you're allergic to some of the meds in a chemo cocktail. They can start with lower doses and build up according to patient comfort, or skip some of the drugs first and then add them later according to patient comfort and response. They can add different anti-nausea pre-meds, pre- and post-IV hydration, and more.

It's always good to have the second opinion doctor/institution and clinical trial options at the ready in case the first decisions don't pan out and the drive is still there. Sometimes the sheer volume of research and paperwork takes it out of me, but good days and good people always restore me.

It's also well understood and and completely respected when a patient says, "enough!" as my dad did last year in his battle with mesothelioma. We're all in this together but all individuals with different needs and circumstances.

@gamaryanne , Did you mean Xeloda = Capecitabine, not cisplatin?
https://www.gene.com/patients/medicines/xeloda 🙂

@marciak9 , ctDNA is short for "Circulating Tumor DNA" -- microscopic DNA pieces of tumor DNA that might be floating around in your bloodstream, not attached to any organ, and too small to be seen on imaging.

The Signatera test is one example of a ctDNA test. Doctors send a sample of your biopsy or surgical tissue to Natera, who builds a blood test that looks for DNA specifically matching the DNA that came from your tumor. It's pretty sensitive but far from perfect (was late detecting my recurrence, which rising CA19-9 actually signaled first). Nonetheless, it's one extra non-invasive tool, another "set of eyes" to help with the monitoring and decision making.

ctDNA is not quite the same thing as cfDNA (cell-free DNA). The Guardant 360 CDx is a cfDNA test used to identify mutations related to cancer. The Grail Galleri test is a cfDNA test used to detect the presence of different cancer types and origins.

They all have some use in the cancer diagnosis and treatment world, but differ in application and approval levels by the FDA and also in doctor acceptance, so your mileage may vary.

I have no medical training, but will never hesitate to ask for more data and another set of eyes. 🙂