Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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.

marienewland | @mnewland99 | Aug 12 7:58am

In reply to @gamaryanne "My current oncologist said now it’s like shuffling chairs on the Titanic. Boom. After a few..." + (show)

After almost 3 years of fighting this disease I noticed theres a point where the physician no longer sees the ability to overcome this as possible. Those are horrible words to hear and I'm very sorry you have to deal with that now. I can see that just as frustrated as we are to fight our disease, so the physician becomes frustrated as well and no longer sees us as a person, but as another failed statistic. It's hard on them too and they can become insensitive. There is the rare case where the physician wants to push for your own good and not for their own case studies and recommends procedures that are not of the typical SOC (standard of care). I heard about histotripsy through this site and when my soon to be oncologist mentioned it as part of her speech at the Pancreatic Walk for Cancer earlier this year; no dr recommended it to me; it was my sister and husband reading up on it that pushed me to do it and,it had positive results. We got the fight in us and we are a cohort pushing through to extend our lives and we can gain this through this online forum by sharing results until a cure is available. Party on Garth!

199 | @199 | Aug 12 8:48am

In reply to @lili62 "Sorry meant to say that my mutation is resistant to cancer. Don’t know how to edit..." + (show)

When you want to edit something you already have put out here, click on the three dots & look for the edit choice. 🙂 Is in an "administrative box saying you want to edit" 🙂 then fix it & click save comment.

lili62 | @lili62 | Aug 12 12:50pm

In reply to @199 "When you want to edit something you already have put out here, click on the three..." + (show)

Thanks 😊 I tried that but I must have clicked on the wrong 3 dots as my 3 options did not include edit.

suelannon | @suelannon | Aug 12 1:13pm

In reply to @optoboy "Hello, my name is Jim. I'm 78yo and was diagnosed with stage 2 PC in May..." + (show)

Did they remove any of your Lymph Nodes and if so, how many had PC ? My Husband had
Surgery in July 2024. Tumor was in Body & Tail of Pancreas. They removed 20 Lymph Nodes and PC was in 14 of the Lymph Nodes.
He had thee same experience with Surgeon coming in and declaring they got it all. He was ecstatic and I was very critical. Knowing that the Lymph Node System is like a Highway with many Exits, how could they know that it was not in any other parts of the body.
The plan was to do Chemo right after the Surgery but he ended up developing a large abscess
in his chest a week after surgery and had to be rushed to the hospital where they inserted Drains. While in the hospital, his lung collapsed. He went home 5 days later and he developed Pneumonia even though he was on very strong antibiotics. They put him on a Third antibiotic. He ended up losing 50 lbs and was extremely weak. Drains ended up being in for 6 Months. After all of this time, we saw the Oncologist and we were told, he was much too weak for any kind of treatment.
The next CT Scan he had, showed multiple nodules in his lungs so we went back in for a Lung Biopsy and sure enough he has PC Cancer all through his lungs. He is now stage 4 .
His CA-19 levels keep going up and in June it was nearly at 11,000.
He decided No more tests or Doctors until September. He wanted to enjoy the Summer with his Family and go fishing and just enjoy Life. He has honestly had a really good Summer so far. He does get pain in his back, his side and his abdomen but it comes and goes and does not stop him from doing anything.
We go back on September 12th for a PET Scan and all of the Blood Work. I am very nervous about this visit but it was so nice to just not think about all of this for a while. He say right now that he does not want any chemo but he could change his mind and I have told him I would support any decision he makes. We are 71 and celebrated our 50th Wedding Anniversary in July. We are each others Best Friend and I can't imagine my Life without him.
After those 6 Months of him being so sick after Surgery, I thought I was going to lose him then. Now that he is doing so well even though he is stage 4, I feel like he will be here for a long time. I wish someone would tell me what I can expect for the future but I always feel like
we are completely in the dark. Up till now, Oncologist has not even suggested Chemo or any other Treatment. I once asked the Oncologist what I should be on the lookout for and she told me nothing, just go home and enjoy each other and help him get stronger.

optoboy | @optoboy | Aug 12 2:43pm

No lymph nodes were involved. The cancer was contained in the tail. Whipple was performed successfully and the surgeon assured me the cancer had not metastasized. Famous last words!

gamaryanne | @gamaryanne | Aug 13 7:07am

In reply to @suelannon "Did they remove any of your Lymph Nodes and if so, how many had PC ?..." + (show)

@suelannon

Jump to this post

We hear your frustration. And your fears. The reality is as you said.
The key to fighting this disease is overall health. If he has no co-morbitities it is much easier to fight this. We are working hard to make this a chronic disease and there are long term survivors. But the initial treatments must be spot on, from the beginning, which many of us battling this have learned. Now is the time to get second opinions. Very important.

gamaryanne | @gamaryanne | Aug 13 7:08am

In reply to @optoboy "No lymph nodes were involved. The cancer was contained in the tail. Whipple was performed successfully..." + (show)

They just can’t really know. One sleeper cell and boom!
Don’t give up!

marienewland | @mnewland99 | Aug 13 8:55am

In reply to @suelannon "Did they remove any of your Lymph Nodes and if so, how many had PC ?..." + (show)

@suelannon

Jump to this post

What a beautiful story and one I can clearly identify with as my ca19-9 was 13,900 up until about 2 weeks ago. I'm 68 and thriving and keeping as active as I can and will be attending my 50th high school reunion this Friday. I've been on the reunion committee via Zoom for several months now and went from an antigen of 11 for almost 6 months to a high of 13,900 and down to 4840. I too have pains that come and go which I know is the activity of the disease so I do not rest easy. I walk almost 2 miles each day and run my single-owned environmental consulting business which I've started the legal steps to hand down to my daughter. I'm scheduled to take a test this month which will guve a certification I've been trying for since 2024; crazy it might seem to others. That's the hope side of me since I am giving gem-abraxane another try, currently. I also have my bucket list, though not much left in it now as I've crossed off a lot since 2023 though I'm writing a small guide for pancreatic cancer patients thst will hopefully help others a bit even after I'm gone. I'm glad you and your husband are enjoying life together now and you are lucky there as my husband's back and neck are so riddled with arthritis now that the majority of his time is spent sleeping just to relieve the pain. But we had many years (since 1980) having carefree fun before we graduated from college and got our careers and settled down with kids, etc. I wish you and your husband well and applaud your approach and am praying for a cure for all of us with this disease.

marienewland | @mnewland99 | Aug 13 9:29am

In reply to @optoboy "No lymph nodes were involved. The cancer was contained in the tail. Whipple was performed successfully..." + (show)

Yes, I've been told at 2 different times by 2 different drs that I'm cancer free; no harm intended just the philosophy style of some drs to try and make you feel good; ignorance is bliss they think. When tumor is in pancreas it's also in the neural or nerve system of that organ. Those nerves can't be removed; so that alone puts us at risk. Also, some growths are too small and can't be seen on CT or even during surgery. I get your frustration. I'm there now with my peritoneal cancer. I'm inquiring about the cancer vaccine to see if it's worthwhile option for me abd I'm doing a lot of praying and just enjoying the precious time I have left.