Pancreatic Cancer Group: Introduce yourself and connect with others
Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Pull up a chair. Let's start with introductions.
When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
So sorry to hear about your diagnosis. my surgical experience was similar to yours.
The first chem infusion was the worst. I’m not sure if they give limited supplements to assess how you react. I had my chemo on Friday and went back rxon Sunday to have it disconnected and to have a Neulasta (which raises your white blood cell counts installed on my arm (it is a shot that cannot be administered until 46 hours after chemo. I highly recommended mend the Neulasta to as it helps your immune system and prevents Neutropnia during the six months of chemo.
I worked throughout my chemo, with the exception of the day of and Monday after. It became more difficult as it went on as side effects are cumulative.
I had pretty difficult nausea which resulted in aversion to eating and pretty severe weight loss. It was actually call chemo driven anorexia. Had pre-treatment drugs when I arrived for chemo, which I believe is standard. As my post chemo nausea was pretty severe. My oncologist added Olanzpine (an anti psychotic med that helps to increase your appetite. It worked very well for me. I am going to continue on a separate post S I have to step away for a bit.
Thank you for letting me know your experience. I guess everyone's is a little different. Were you on the Fluorouracil regimen? My doctor says I will have that, Irinotecan; Oxaliplatin and Leucovorin. I'm having my post surgical CT scan 7/9; port on 7/10 and then begin on 7/15. How was your post surgery bloodwork, especially the CA-19, if you don't mind me asking? Again, I know that everyone's journey is so different, I assisted my brother through his 4.5 year battle with stage 4 metastatic colon cancer. He was a warrior with little to no side effects until his liver surgery which really destroyed him unfortunately. I am glad that it appears this was caught early enough, for both of us, that treatment is available. Any other advice or just thoughts much appreciated. I am trying to put on a little bit of weight prior to starting, I'm only about 8 pounds off of my normal which is about 145. I got down to 133 after surgery but I had been losing some weight prior to surgery because of my gallbladder issues. I refused to eat anything with too much fat content or I would have a gallbladder attack. I had a cheeseburger for the first time last night in 6 months and it was heaven! I haven't eaten beef since January, only fish and chicken. I was 138 this morning, so I'm pushing for another 5-6 pounds before 7/15!
Thanks, I guess every surgeon and oncology team has their own reasoning. I was just surprised because my tumor was 5.5 mm, however, based upon the scans, bloodwork, etc. the team at MSK was convinced it was pre-cancerous. Now we didn't do a biopsy as he felt there are a lot of false/negative and/or false positive. Regardless I wanted this thing out of my body! I am so happy that you are a 12 year survivor, that's amazing and a testament not only to the strides that the medical field is making but your obvious strength and determination. Bravo!!!
Where is mother being treated?
Happyjack,
I also feel like I was able to do many things I liked when I was young and healthy; although a broke college student for many years, however with income from sale of my home I have a bit to splurge now. I typically stay away from fat just because it’s so unhealthy. I did go on Creon for about 6-7 months after my surgery, but I no longer take it now. Protein shakes are a great resource following chemo sessions when I don’t feel like eating any heavy type foods. I buy my own vegan protein, almond milk, and Hersheys powder cocoa and 3 ice cubes and blend. I like to make a lot of my own food since I know it’s free of most additives and preservatives. I try to drink 1 shake per day but if I don’t , I’ll eat eggs and low sugar Chobani yogurt to try and get my share of protein for the day.
I also wish you much more quality time to spend with your sons and hopefully for a cure!
Fat is required for us all. I do agree that a lot of us, and me included, do eat more than we require and the fat that is not as good for us. I like it all. Meat lovers pizza all the way to olive oil egg white veggie omelet. And even a fresh salad dry with no dressing, and then back to Hog wild for BBQ. I take no fat Greek yogurt and add unsweetened apple sauce to it for a no fat breakfast with skim milk and toasted oats cereal. Then every once in a while, have bacon and eggs with potatoes and biscuit and sausage gravy. We do need fat and the Mayo Clinic provides a more specific range: 44 to 78 grams of fat per day for a 2,000-calorie diet2. And I love olive oil for chili and pizza I make. Had I not been able to digest waxy veggies with vitamin K my cancer would not have been found. They would still be telling me I was not digesting fat and getting the nutrients I needed from fats just because I was old. Again, the key part is that we need nutrients from fat.
I do now have a surgery date of July 12th for the Whipple. I hope that afterwards I will be able to get away from the Creon as it is expensive. And it does not work as well as I think it should.
And I do wish for a cure for all cancers. Take care and best of luck to everyone going forward with this.
MD Anderson Cancer.
Jacksonville, Fl.
To bwquartertide,
Sounds like your mom is in a good facility. When you say your mom continues to lose weight- is she still at a weight that would be considered normal for her age and height? You will lose weight as a result of surgery. Due to complications (a leaking pancreatic duct and consequently no real food for about 4-5 weeks) I was on the verge of emaciation and almost not able to receive chemo after 2 cycles of chemo. Also lost weight trying to keep my blood sugars in the numbers endocrinologist was looking for. Following a long-term survivor/fellow diabetic’s advice I began to put my diabetes at the forefront of my battle and eat most anything. I gained almost my pre surgery weight back at 154 and I’m 5’4 and 66 years old. I’m losing a bit weight now (ok’d by my oncologist for just 10 pounds). I still feel weaker than I did before I ever became a stage 4, but you learn to adjust. Continue her mild exercise IF her dr approves it, even if it’s just riding a recumbent bike. I wish you and your mom well in your journey.
Correction: I put my cancer at the forefront of my battle and diabetes at the back.
I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same.
I’ve been reading as much as I can all the while trying not to cry
Looking forward to sharing / reading in this thread