Pancreatic Cancer Group: Introduce yourself and connect with others

I guess i should have started here. Hi all. I waa diagnosed in January or February of 2026. January they found what they thought was a benign lump on my pancreas on an ultrasound. February they did an MRI and thought it was cancer, then PET/CT scan and confirmed it waa metastatic, to liver and a lymph node. I had 3 biopsies and genetic testing. I'm getting palliative care and chemo ,folfirinox. I had my 11th hospital treatment today and am at home with the take-home drug until Wednesday. My CA 19.9 has dropped from 880 at the start to 49.5 now. My last CT scan didn't show the pancrearic tumor, the liver tumor has shrunk to 1/2 and the thyroid tumor by 1/3 so I guess I'm doing well. I may have 1 more treatment and then I'll get a mandatory chemo break. I'm hoping I'll live long enough to see my kids at Christmas time if they can come. (They live far away.) I'm also trying to research clinical trials, and daraxonrasib.

@kyshoor Hi and welcome to Mayo Connect. I think it is great that the chemo seems to be working. Good for you. But, chemo usually comes with some challenges. Are there any challenges causing you difficulties at the moment?

Hi @dakotarunner @marvinjsturing @moo1 @cindee60 @dianamiracle @natalex @susandc @salledell @nasagia36 @beachgirl23 @search4healing @nogginquest @sucante. Welcome to the new group on Connect dedicated to pancreatic cancer:
- Pancreatic Cancer https://connect.mayoclinic.org/group/pancreatic-cancer/

Be sure to +Follow the group. Why not start by introducing yourself? Share your story: When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

@tomrennie At the moment I'm exhausted, hiccuping a bit, with a grumpy gi tract and headache. I'll feel much better when i get the fluorouracil removed tomorrow. I can't ever sleep with it, but that could be the dexamethasone they give me pre-chemo. I'm on dose 11 and they've been cutting doses since dose 4 so it's easier than it used to be but I'm slower to recover. The neuropathy got suddenly bad after dose 8 and they dropped the oxalyplatin entirely. I didn't weigh enough to decrease it. I didn't think chemo would be a picnic but i wanted to at least try to live longer so it's worth it. There have been really good days with friends and family and doing fun things.

@kyshoor It doesn't sound like a picnic, but it seems like you are pushing through the best that you can. That's not easy to do. Hopefully removing the fluorouracil will help. Sleep and rest are important for tolerating chemo. So is spending fun times with family and friends. That motivates me to keep fighting forward. Where is your neuropathy?

@tomrennie I'm not even sure it is neuropathy. I don't have pain and it's not limited to my hands and feet. I feel like my body is filled with wires and they are all vibrating. My doctor thought it might be an electrolyte imbalance but they've checked twice, after 2 different treatments, and that was fine. I just feel like I'm vibrating all over and i get very weak and exhausted. I do have the typical tingling and temperature sensitivity in my hands and feet. In a day ot two the vibrating feeling subsides a bit but then i have a mild shake/tremor in my hands. If I'm still doing that when i see the doctor or nurse they put off the chemo by a week or two. Anyway it's not fun.

@colleenyoung -my husband was diagnosed 3 weeks ago and we are still waiting on the final biopsy. We are told it's most likely a rare tumor so that's why it's taking so long.

@tomrennie I'm not even sure it is neuropathy. I don't have pain and it's not limited to my hands and feet. I feel like my body is filled with wires and they are all vibrating. My doctor thought it might be an electrolyte imbalance but they've checked twice, after 2 different treatments, and that was fine. I just feel like I'm vibrating all over and i get very weak and exhausted. I do have the typical tingling and temperature sensitivity in my hands and feet. In a day ot two the vibrating feeling subsides a bit but then i have a mild shake/tremor in my hands. If I'm still doing that when i see the doctor or nurse they put off the chemo by a week or two. Anyway it's not fun.

@vcwilh Hi and welcome to Mayo Connect. So your husband was diagnosed with pancreatic cancer 3 weeks ago? How is he feeling?