Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Connect
@donomary My wife has PDAC and had 11 treatments of folfirinox last year. She advises not to cut all your hair off to start as she didn't start shedding until she was two thirds of the way through. And, even then, she didn't lose it all and I thought it was hardly noticeable. Of course, everyone is different but just wanted to share her experience. Good luck with treatment! And sorry for your diagnosis. Folfirinox, by the way, shrunk her tumor in half. She is, after more than a year, still Stage III.
-
Like -
Helpful -
Hug
1 Reaction@flowergarden26 Hi and welcome to Mayo Connect. You don't need to be a Mayo patient to learn and share here. OK? We all learn from each other. Your diagnosis is pretty recent. How are you feeling about everything? What chemo with you be on? What do you know about that chemo?
@gvk911 Hi and welcome to Mayo Connect. You also have a recent diagnosis. How did you find out that you had cancer? What tests/scans resulted in the discovery of a 2cm growth? Were you experiencing any symptoms?
@gsf I also lost no hair after 12 infusions, 6 mo. of Folfirinox.
-
Like -
Helpful -
Hug
1 Reaction@tomrennie
Hi Tom,
I had an MRI (I believe) and there were lumps on my prostate and liver. An MRI was scheduled six months later to check on the liver. In the meantime, I had a prostate biopsy that confirmed that I had prostate cancer. I was to have Brachytherapy for the prostate. However, after the second MRI, there was a growth on the pancreas. A CT scan and an endoscopic Ultrasound were performed. The CT scan showed that there was no cancer in the bones. However, the endoscopy showed that there was cancer in the pancreas. As a result, the Brachytherapy was canceled. Shortly afterwards, I had an ultrasound endoscopic liver biopsy and this showed that there was cancer in the liver. I am just waiting to hear from the oncology specialist.
I believe that is what has happened.
Other than being tired, I was not really exhibiting any symptoms. My feet did feel different, sort of like there was a layer of fat on the soles of my feet. I have since looked at the symptoms of pancreatic cancer and there are many symptoms but these two stood out for me and they did not seem all that dangerous.
A few years ago, I was diagnosed with hemochromatosis. My body would not get rid of the iron in my blood. I had some phlebotomies and did get it under control. I was tired at the time and I think that the tiredness went away but still lingered on.
Warm Regards,
Glenn
PS Tell me your story about being with this support group, svp!
-
Like -
Helpful -
Hug
3 Reactions@donomary
Dear Mary -- You should consider going to a designated comprehensive cancer center. This link below lists several comprehensive cancer centers in Southern California:
https://www.cancer.gov/research/infrastructure/cancer-centers/find
The pancreatic cancer network has lots of useful information and contacts:
https://pancan.org
If surgery is an option consider going to a high volume center. The pancreatic cancer network can help with that.
Dan
-
Like -
Helpful -
Hug
1 Reaction@gvk911 You have had a bit of a journey to get here huh? Hearing the diagnosis can be quite a gut punch. Have you been able to catch your breath a little yet? The conversation with the oncologist determines your next steps correct? Do you have an appointment for that conversation or is it just sitting by the phone waiting for the call?
After about three years of getting progressively sicker and unintentionally losing a lot of weight, I was diagnosed with stage 4 pancreatic cancer in 8/22. It spread primarily to my liver and some bones. Due to the spread, surgery wasn't an option. I have been living on chemo since. I get treated at Mayo in Phoenix. I got a folder of information during my diagnosis oncology visit with a mention of Mayo Connect. I lurked around for a few months and learned so much from others. It confirmed that I was fighting for my life, and we are better than me. So, I decided to contribute my journey to hopefully help others by being part of their we. I also learn something new every day here, and it is nice to have a group of peers that can relate to what I am going through. In addition to helping with the medical side of things, it also helps with the mental and emotional side of being a cancer patient. At times, I find them to be equally if not more challenging as the physical obstacles. Until you get the diagnosis, you really don't know what it is like.
-
Like -
Helpful -
Hug
2 Reactions