Pancreatic Cancer Group: Introduce yourself and connect with others

@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.

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.

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.

@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.

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.

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.

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

I couldn’t have a Whipple because my tumor was wrapped around a major artery. He would have had to remove my pancreas, stomach, spleen and gallbladder was already removed. My esophagus would have been connected to my colon so I could never eat a regular meal and would’ve had constant painful diarrhea. Stay close to a bathroom. Not a good quality of life. And it would still come back but I’d be too weak for chemo. At least this way I can enjoy my family and deal with recurring issues as they come.

Sounds like it was the right decision. Wish you the very best going forward - we always hope that the next big breakthrough is right around the corner.

It sounds like you made an excellent choice. I just had a standard Whipple and it took months to get over it, after six months I am getting a life again