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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 3 days ago | Replies (1298)Comment receiving replies
Morning,
I've been following a lot of post for a while and figured I better do this intro forum.
Pancreatic journey for 2023:
March - had been having what they thought was heartburn. After getting jaundice, pale BM and itching, my primary care immediately sent me to the hospital for an endoscopy. It confirmed PC. - stage 2B.
March 5 - May 19 - chemo - Fluorouracil, Oxaliplatin, Irinotecan.
June 29 - Whipple procedure laparoscopically. Removal was good with nothing in the margins. HOWEVER, 9 out of 22 lymph nodes showed signs of the cancer 🙁 15% survivability estimate.
July 1st - massive pain in the hospital - they found that they nicked my bowel during surgery and did not discover it for 2 days. I spent 6 weeks in the hospital with various infections and problems. My family didn't think I would make it home ever again.
August 14 - back home and bedridden.
August 19 - back to the hospital for a week. - The G/J tube was not in the right location so I was getting no food or fluids for 5 days. Extreme dehydration, new G/J tube.
August 28 - November - back home, trying to recover - very little movement.
Nov. 1st - tried chemo again - so sick, they sent me to the hospital again for 5 days 🙁
Lost over 40 pounds in 2023 !
January 2024 - I'm just waiting at this point. I've just stopped the feeding tube which was great to gain 10 pounds back and remain steady. The "waiting" part just sucks.
I called my oncologist and they will be doing blood work with CA19-9 early - along with a CT scan.
Have researched things endlessly. Seems like it will come back at some point.
QUESTION: If my CA19-9 and CT show things going back up, I know that clinical trials are probably my only hope. The oncologist did say that they could try gemcitibine chemo to "help" - not a cure. Realistically, if things turn worse - how much time can I really expect to have? I'm trying to get everything in order for my kids.
Replies to "Morning, I've been following a lot of post for a while and figured I better do..."
Hello there,
My heart goes out to you as you've really had it rough! May I ask which medical group or hospital you were treated at? I live in Orange County, California and was treated at Hoag - not a Center of Excellence and I believe they really messed up my possibilities to be "cancer free" for at least a year or two instead of 4.5 months. Waiting is difficult, and we never know the consequences because there are different versions of the pancreatic mutation; there is a chance it could come back but for how long, no one knows. There are survivors so I hope you are one of the lucky ones! Be your best advocate and read as much as you can about the disease - this site is a very good source of information. I lost 50 lbs in the process, but I did gain 25 back and I'm thankful because it will help me fare well over the next few months. I think everyone should be prepared as far as wills, living trusts, etc. I'm actually in the process of selling my home so that I can ensure and see my children get to enjoy at least some of the money! My advice, be vigilant about your health, knowledegable about the disease, participate in these discussions as we all know exactly what you are going through, and how you feel, and enjoy life to the fullest!
Connect
Hi again @waltsocal,
As you are probably aware, Connect is a patient-to-patient support group and we are not able to offer you medical advice or other information specific to your condition. However, we can offer you encouragement and support as you go through the process.
I would encourage you to seek out a Pancreatic Center of Excellence in your area. At facilities such as these, the doctors work with this type of cancer on a regular basis and therefore can be very helpful with educating patients and understanding the best treatment plan possible.
As you connect with others on this forum like @markymarkfl @stageivsurvivor you will see that their experiences show this to be true. Have you considered a second opinion at a center that specializes in pancreatic cancer?