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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 12 hours ago | Replies (1379)Comment receiving replies
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.
Replies to "Thank you to all. My prayers for all of you in your continued fight and wishing..."
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@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.