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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?
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@woodlanddsm, thank you so much for sharing your brother’s positive experiences with the U of I. I actually have an appointment with Dr. Berg this Monday, and with Dr. Chan the following week! I’m scheduled for 6 rounds of Folfirinox to start, then a reassessment. Knowing that your brother has had such good treatment and positive results is very encouraging to me! Thanks again!
Welcome new members @teddybears @cturner0625 @jillywilly @nypatriot @catrinka58 @victoriadukes @dramagrandma1 @tiffboss.
@teddybears, do you have pancreatic cancer or are you caring for someone who has cancer?
@dramagrandma1, caregiving from afar is tough. I'm sure your daughter feels your love and caring no matter how many miles separate you. It is hard to know how to give her space when you're not there to read the signs. I get that. Does she or her husband share updates with the family in a group email or something like CaringBridge? That can help to stay connected and informed without having to ask questions.
@nypatriot, any updates? Has pancreatic cancer been confirmed or ruled out?
@victoriadukes, I bet the news of pancreatic cancer came as a shock. Similar to @cturner0625, a secondary medical issues helped catch pancreatic cancer early. You're definitely in good hands at Mayo (as you know). There are several discussions about Whipple surgery in the group. Here's one to get you started:
– Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
@jillywilly, would love to learn more about you too. Have you or a loved one been diagnosed with pancreatic cancer?
@tiffboss and @catrinka58, telling family and friends is tough.
What are your tips for tellling family and friends about your diagnosis? How can you keep them informed but also take the time you need to focus on yourself, treatment and this new world of cancer?
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1 Reactioni CALL/INQIRE WITH EMAIL, THOUGH SHE MOST OFTEN DOES NOT RESPOND. FAMILY ATTEMPT TO KEEP ME UPDATED, HOWEVER, IE. NOVEMBER1 BEING THE TIME PHYSICIANS RECEIVE INFOR
MATION PERTAINING TO HER NEXT PROCEDURE, BE IT WHIPPLE/NOT, ARE TIMES THAT ARE IN
"LIMBOLAND" THE FAMILY \, HER BROTHER AND HIS WIFE AND CHILDREN LIVE VERY FULL LIVES.
THE HUSBAND IS VERY, VERY, PRIVATE, AND IN THE TWENTY TWO YEARS THEY HAVE BEEN MARRIED HAS BEEN ONE NOT TO "COMMUNICATE", I REALIZE THEY CARE BUT SHALL LOOK INTO CARING BRIDGE;
SINCERELY, BETTE
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1 ReactionMy
Brother had it 2008
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1 ReactionYOU EXPRESS AUTHENTIC FEELINGS THAT SOME,
ARE UNABLE TO SAY. SEE ABOVE, MY DAUGHTER.
SHE IS "BITE THE BULLET' PERSON.
I SHARE MY DEEP COMPASSION OF YOUR SITUATION AS I HAVE NOT BEEN ABLE TO "GET THROUGH" TO MY DAUGHTER; SHE JUST ISN'T READY NOW TO BE "MOTHERED" AND FOR ALL I KNOW SHALL NOT NEED THIS THRU HER JOURNEY THOUGH I DO SEND THOUGHTS VIA EMAIL AND DO NOT KNOW IF SHE GETS THEM OR NOT, AS THERE IS NO RESPONSE.
SO, WILL YOU ALLOW ME THE PRIVIGLE TO BE PART OF YOUR EXPERIENCE? DRAMA GRANDMA
My husband has stage one Ampulary cancer and had Whipple surgery. Most of the side effects of the surgery are diminishing although he is more than 50 lbs below his normal weight and he’s very weak. I have a question for anyone who has experience with a certain symptom. He suddenly begins to shake violently, can’t get warm (even though his skin is warm to the touch) and develops a slight fever which responds to 2 Tylenol. The whole process lasts about 20 minutes and occurs about twice a month. Our oncologist seems to think it’s related to liver problems he has. I’d really like to hear more from anyone who had experience with this. Ty.
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1 ReactionHello All,
Just diagnosed Sept 2022, have both bile duct cancer and pancreatic cancer. I’m female, in my 50’s and losing weight like crazy (not trying to), have a touchy gallbladder so low fat/no fat diet. Waiting on chemo recommendation.
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3 ReactionsHello Everyone...Positive vibes being sent. My name is Christie and I have posted here previously. I was diagnosed with pancreatic almost 2 years ago. I was extremely lucky. My tumor was encapsulated and was removed as well as my spleen even though there were no issues with my spleen. It was a safety measure to remove. I did not have to have chemo or radiation and my only treatment was surgery. I am coming up on my next 6 month scan October 12 and for the 1st time I am a little concerned. I am not really a worrier I am a warrior. I have pain in my left side just like before. I am bloated, have heartburn and tired. Food is not my friend because every time I eat I feel nauseous or vomit. I just had a colonoscopy and an endoscopy 2 weeks ago. I was told by this particular doctor everything was good but I knew better (not my regular doctor). I requested my pathology report and it wasn't all good. I have an ulcer which needs to be addressed. Not too serious but can be if not treated. Then I found I have a rare cystically dilated gland in my esophagus. Typically benign but can turn into esophageal cancer if left untreated. Anyone had any experience with this? I just needed to to say this out loud. Thank you for listening!!!
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3 ReactionsApologies about the length, I didn’t realize how much I have gone through until I wrote it down!
I live in a very rural community so access to docs isn’t the quickest or easiest. And this is a most entertaining journey I wish I never had to take.
My story… I joined Weight watchers in 2020 with the intent of losing 50 pounds in a healthy way and keep it off. It was exceptionally easy for me to lose the weight but since it was no more than half a pound a week there was no concern. About 6 months in I started having a pain in the middle of my abdomen after I ate. My husband, who lost his mom at my age to colon cancer, became insistent that I see a doc. Since I live close to the middle of nowhere, the referral my local doc provided for a colonoscopy took 9 months to even get me an appt. I wasn’t concerned since noone in my family has had cancer and I have no experience with cancer. The GI doc I finally saw told me my pain was just muscular but he would go ahead and do a colonoscopy. Three months later as I’m coming to from the colonoscopy the GI doc tells me all was good but if I really want we can do a CT scan. I’m like d’uh, I wanna know why I’m hurting after I eat. Fast forward to March 17, 2022, 20 minutes after my CT scan I get a call. They found something and want to do a biopsy. I’m clueless, but hubby heard the conversation and lost all color.
Turns out I had a nice little tumor. Well, small tumor but it was/is very intimate with several arteries and a few veins. The only place in the state that does the EUS biopsy is 5 hours away. Not a big deal but they would not return my calls to make an appt (They finally did after I started chemo.) The GI dept called the following Monday and went ahead with a referral to oncology without the biopsy. As luck would have it, hubby’s sister works at University of Washington Medical Center and they got me in a week later. The EUS confirmed it was malignant, and we met with the Seattle Cancer Care Alliance on April 1, 2022. Oh what a fun meeting THAT was! The oncologist kept texting his wife during our appt and pretty much told me to live my life as much as possible and gave me enough oxycodone to kill a horse, even though I told him I didn’t hurt enough for pain meds that strong. He said I didn’t need to meet with the surgical oncologist because there was too much vascular involvement for surgery. We insisted anyway and thankfully, the surgical oncologist was amazing. He used colored pens (I’m very visual) to draw out what the problem was and why nothing could be done AT THIS TIME. Three little words that give hope. You never realize how big a word HOPE is until you need it. The next step was getting into oncology at the closest clinic. Working on two weeks from GI referring me to oncolgy and them not returning calls, the SCCA ended up calling one of the docs in the local oncology clinic and had me hooked up the following week.
Wait… It gets better. There is a huge turnaround for docs in the oncology department. They hooked me up with a medical oncologist who seemed great! Well, sadly, not so much. She was rightfully requested to leave by the hospital after I saw her a couple of times. Turns out she never listened to any of her patients. That was back in April/May. I have only seen a PA since then. They have a tumor board and all that reviews cases each week I guess but she is great and helps any way she can. After we finally started chemo (FOLFIRINOX) we decided to look for a second opinion on treatment. Then we met Dr. Truty. That’s been it’s own little whirlwind, but at least we are still on that wave of HOPE. Mayo has been amazing with answering my questions and squeezing me in to last minute appts.
I have handled the last ten rounds of chemo well. With the 11th I just finished we removed the Oxaliplatin because I began to notice some light neuropathy. I have responded well enough that the tumor has shrunk and my CA19-9s have dropped from 1488 on April 1st to 99 September 20th. Hubby has been home since we found it and has helped me through the exhaustion from chemo, among the other myriad of issues that come with it. I still work when I feel up to it (desk job so it is mostly paperwork) which is a nice distraction.
Currently, we are continuing chemo until I return to Mayo Rochester in Nov to restage. :- ) HOPE!
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9 ReactionsHi - My name is Kim and I'm here for my mom. After two months of tests and 2 inconclusive biopsies with a third conclusive (finally!!) biopsy, Mom has been diagnosed with adenosquamous pancreatic cancer. It hasn't spread outside the pancreas but it is abutting two arteries (veins?) which is concerning. Plus we know she has an aggressive variant of pancreatic cancer so we know we have along, tough road ahead - and we learn more about it every. single. day. Mom is a strong, amazing lady and my dad and I will be by her side helping her every step of the way. Anyway, Mom is about to start chemotherapy rounds of Folfirinox this week. So my biggest question at the moment (I'm sure I'll have tons more very soon) is 1) what types of side affects she should expect after chemo treatments and 2) what we can do to help ease any of the symptoms - ie, certain foods that will relieve the nausea, etc. If anyone has any suggestions, I'd appreciate it. Thanks so much in advance. And peace, love and light to all.
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