Pancreatic Cancer Group: Introduce yourself and connect with others

Hello @demooretucson,

If you would like information about the recovery time from a Whipple procedure, here is a discussion that you might find helpful,
--He Finally Has Surgery
https://connect.mayoclinic.org/discussion/he-finally-has-surgery-appt/?commentsorder=newest#chv4-comment-stream-header

If you would like to know more about a Whipple procedure and the recovery time, I suggest that you go to the Search function at the top of each screen. Here you can put in the word, "Whipple" and it will bring up every discussion and posts where the "Whipple" is used. This way, you might find more members who have experienced this procedure. As you look at these posts, feel free to hit "Reply" and ask questions of the member who posted.

How are you feeling now? Has your appetite been affected by the chemo or the cancer? Have you lost much weight?

Cealia,
Weekend was good.
Has a suspicious CT looking for lung issues 4.4.22. Had PET scan 5.23.22 from pulmonologist. 5/25/22 both the pulmonologist and my PCP wanted to see me about the PET results. Had EUS @ Mayo, Jacksonville to confirm dx 6/10/22 then more tests from Mayo & surgical zoom call stating no surgery for 6-9 months then the prognosis on 29 June by Zoom call. Saw local oncologist 7/1/22; got port 7/7/22 and first chemo of the 44 chemo tx started 22 July 2022. At first for over a year I had chemo 2 weeks on and 1 off because the local oncologist said many pts could not tolerate 3 on / 1 off. The dose got lowered by 20% once & later changed to every other week. Never missed a chemo due to CBC results. Neuropathy for me is the worst, but acupuncture is helping restore my feet 🙂
I was given decadron and aloxi prior to chemos & I had generic Zofran & Compazine for after.
The first two sessions I used the Zofran/Compazine alternating every 4 hours then only prn if I was nauseous. (Not often @ all 🙂
The last 12 months was so much better since they have a cancer clinic in my hometown, and it is only less than a mile away! Before we went to Savannah which is about 45 miles away! That really did drain me.
I use protein powder from Walmart. (The chocolate is good) every day and eat lots of blueberries, vegetables and fiber/grains & I like meat & fish. The only things that really did not taste good to me were ranch dressing, Walmart chips in a can, and some pizzas/cheeses. I did not lose any weight! I gained 25 pounds & now have lost 7 of them (over about 5-6 months). Did lose my hair after the second treatment, but now I have fuzz on my head, eyebrows & eye lashes coming back & of course! Hair on my legs! (Who needed that!) 🙂
Am getting really anxious about this first CT post stopping the chemo after 28 Dec 2023!

Thanks, Theresa -- I'm gaining weight. The only side effect is gradual hair loss. My blood tests were read before infusions two and three. The nurse practitioners described the results as "fantastic" and "phenomenal." I developed a 16-week "training plan," so I'm in my best possible physical condition for surgery in April/May. It focuses on nutrition (125 daily grams of protein) and hydration (3.2 liters daily); each week includes five two-mile walks, two 30-minute strength training sessions, two 60-minute swims, one 60-minute stationary bike, and one round of golf.

@demooretucson

What great preparation for both the chemo treatments and any possible surgery. You are obviously being proactive in your health care and that is so very important. It helps you both physically and emotionally.

Keep posting as you have questions.

Wow that is quite the journey. Prayers for your pet scan.
Did you have any liver fibrous with your pancan?
I am on pins and needles waiting to hear from team dr after tumor board meets today. She said she would call sometime this afternoon. Phone attached to me all day🥴😌. Just reminding myself PEACE all will be ok. Just have to come to terms with the answers.

Will say some prayers for you.
No liver fibrous that anyone noticed.
I know that pins & needles feeling. Are you able to access the PET results online through a patient portal?
Hate relying on phone calls and being attached to a phone. Never fails someone calls "just to talk" & rambles on so you have to tell them I am expecting a call from my doc. Does not seem right to say an important call because they may feel like you think they are unimportant. 🙂

I know what you mean about the phone calls. I have been chasing this Gastric pain and symptoms for 4 years so many of my family and friends have ALL been waiting for me to call them. It can get very isolating. Somedays just getting up and making myself eat is all the energy I have that day.
I have learned to say I'll call you back my Dr. is calling. Then I either text a short message or a short call.
So far no pet scan done. Hopefully after this call today I will have more answers. Hang in there it seems we have a long journey ahead. As the saying goes " How do you eat an elephant...
One bite at time.

Hi @demooretucson, great picture. I hope you'll add it to your profile, too.

You may also be interested in connecting with other members with cholangiocarcinoma in these related discussions:
- Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?
https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer/

- Diagnosed with cholangiocarcinoma, can this be treated?
https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

See all cholangiocarcinoma discussions: https://connect.mayoclinic.org/search/discussions/?search=cholangiocarcinoma%20

@colony501, I can imagine that you are concerned. You mention that you do not have the gene mutation. Has you family done genetic testing for familial pancreatic cancer? Have you had the MRI yet?

Hi all. Was recently diagnosed with stage iv pancreatic cancer. 6 liver mets. I have a rare (2.5 %) form called " uncinate process ". From the little that I can find, it is that hook on the end of the head of the pancreas, with not a good prognosis. Any thoughts would greatly be appreciated.