Pancreatic Cancer Group: Introduce yourself and connect with others

Terry:
This is Deb, wife of Tom, also 45 years. We have a very similar story. Tom was diagnosed in early March with what they said was a stage 2 tumor on the head of the pancreas. He endured 2 months of Folfirinox (which failed) and 4 months of Gem/Abraxine, which did lower the CA19-9 from 800 down to the 200s. We were so looking forward to the Whipple on Dec. 9 at Froedtert in Milwaukee. Devasted to receive a call from the OR that they found 3 tiny spots on the stomach lining, therefore, they abandoned the whipple. 5 hours of surgery to remove the gallbladder, reroute the bile duct etc. All they are suggesting now is more Gem/Abraxine. We are also looking for better alternatives! Going to speak with UW Carbone in Madison, WI and an inperson appt at Mayo in Rochester on the 17th of January.

Hello, I am the wife of Bob, my husband of 45 years. He was first diagnosed April 2022 with (very early) bile duct cancer, later scans showed (a very small mass on the pancreatic head.) . no found spreading and was on the road to a Whipple procedure after 4 rounds of chemo on his way to a potential cure.. At surgery they found more cancer that had spread into the belly (little seeds) , They now feel that this is pancreatic stage 4 cancer. They didn't do the whipple , but did repair a large hernia. The only treatment recommended for him going forward is more chemo and feel he has about one year to live. We are seeking more options and have found a study in Portland, Oregon using T cells and will be talking with them soon. we also read about an oral medication (Texas oncology) Lynparza PARP inhibitor that delays progression and improves survival rates. We are not getting much support from our local oncology department for new helpful treatments or clinical trials. I am reaching out to all of you if you have tried other helpful treatments to extend life. Thank you all so much for any information you can share with us. We Wish all for you the best.

hi @debleigl, oh I cannot imagine how disappointing it must’ve been to get the call from the operating room that they could not proceed with the Whipple surgery because cancer was found to have spread.

Here is the post from @lovingwifeterry, where she mentions having experienced a very similar (almost identical) situation. https://connect.mayoclinic.org/comment/779214/
As it turns out her husband has bile duct carcinoma.

Deb, I’m encouraged that you have an appointment at Mayo Clinic next week. There is hope, it’s just been re-shaped. Which Mayo Clinic location will you be going to? I can connect you with others who have been there.

Hi Barbara, how are you doing? How is radiation going?

Hi!
I’m Barbara. I was diagnosed in Nov 2021 with IPMN cysts all through the main pancreatic duct. I had total pancreatectomy on 11/11/21. At the time Dr said pre-cancerous but 3/27 lymph nodes were cancerous.
I started chemo in Jan 2022 after a PET scan showed cancer had metastasized to several small places on bottom of both lungs.
Chemo dropped my tumor markers and scans showed clear except for a suspicious place in the surgical bed.
I stopped chemo in April and was feeling good until about July when I had increased stomach pain. Dr went back and scrutinized scans and decided I needed to be back on chemo. I started back 4 weeks ago. Stomach pain is better but this week I saw Oncology Radiologist for possible treatments after chemo. After a lot of questions and finding out I was having mild early morning headaches and nausea she ordered MRI of brain. This showed up 3 lesions with one on frontal lobe a little larger and edema.
I am now taking a steroid for swelling and start radiation on my brain tomorrow for 10 days. I’m feeling anxious but thankful for Drs questions to find out so quick and be able to get right into treatment.

I was diagnosed with squamous cell carcinoma on the base of my tongue but during a CT an incidental find on my pancreas which is a 4.5cm tumour on the tail. I'm still waiting for biopsy results but it is looking like cancer apparently. Really worried as now my treatment for the throat will probably be put on hold so I guess it will keep growing. My worst fear is that the pancreas is not curable as they can't tell me that yet....

Several weeks ago, my husband and I (we are both members of this blog) saw a post by a member whose husband of 45 years, went for the whipple procedure, only to have it canceled because of spread. Now, we are in the same position. After being diagnosed as stage 2 in early March, having gone thru 6 months of chemo and 6 weeks of radiation, the whipple was scheduled for Dec. 9. An hour and a half after the surgery started, I received a call from the OR that they were not doing the whipple because of 3 small spots on the stomach lining. Surgery still lasted for 5 hours for removal of gall bladder and rerouting of the bile duct etc., but the tumor was left behind. Needless to say, we are devasted after all these months of positive hopefullness. We, too, are married 45 years, so the story resonated with us. Is there a chance we could connect with that posting again, since we can't find it now. We are coming to Mayo Clinic in January for a 2nd opinion. Up until now, we have been going to Froedtert in MKE., Wis.

Hi, can you tell me where I can post questions about IPMNs and EPI and dilated common and pancreatic ducts? I have not been diagnosed with pancreatic cancer but I am concerned especially since I did have uterine cancer 17 years ago. Thank you

I have BRCA 1 as does my sister, 2 years younger than myself. Looking for information on screening protocols and also insurance coverage for screening. I see that the options seem to be endoscopic sonogram and MRCP as well as testing for CA 19-9 and there are trials on the optimal screening protocols.