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.
Hi Teresa, thanks for your reply. I'm dealing with pain in my back that seems continual, I'm doing ok but did a few hours in the ER yesterday due to extreme symptoms at one point. I'm only just getting to a few dr's. Tomorrow I will see a Kidney Dr. that is good and willing to help me look at this symptom batch. Next I have a Gastro sched. for the first week in Jul. I've only consulted with my GP until now. However in the past three years, I've had appointments with three separate gastros. I have a few years of symptoms such as digestion problems and back pain, but getting to the pancreas is just now happening. If the diagnosis from these next two specialists does not reveal an answer, I very much want to pursue Mayo due to the much greater experience and ability to connect the dots as they say. I have great difficulty with my diet. There only are a few things I can eat at this point. And yet I still seem to have reactiods as i did this week. I will save on my browser those recommendations you have made and going forth, they should be very valuable, thanks so much to you and the moderator!!!! At this point I have to go one step at a time, but I need an answer I hope and pray, as this kind of sensitivity to food is a real drag and leaves me tired much of the time.
Hi Olga, I agree with everything that @hopeful33250 suggests. Social workers can really help.
To have Mayo experts review your medical records, contact Mayo Clinic in Jacksonville, Florida. Here's the contact information http://mayocl.in/1mtmR63
While Medicaid may be limiting, you may qualify for Financial Assistance at Mayo Clinic. See more info here: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
Please keep us posted as you find out more about your diagnosis. Olga, is pancreatic cancer suspected at this point?
Hello @olgaphil and welcome to Mayo Clinic Connect. Connect is a great way for patients to interact with others who have similar diagnoses. It is a place where patients can give and receive support along their health care journey.
How you are feeling? You mentioned that you have had an MRI and consulted with a gastro specialist and now need to see a Kidney specialist. If you are comfortable sharing more: what are your current symptoms? What have the MRI and consult revealed about your health?
Since you have limited medical insurance coverage as well as limited funds, I would encourage you to first talk with your hospital's social workers. They are often able to steer people with financial constraints and help them to find the services that they need.
There is an organization called Aunt Bertha. They also have a service to help patients. Here is a link to their website, https://www.findhelp.org/
If you click on the link you will see that you will be asked to put in your zip code and it will bring up various services available in your community.
As a first step, however, I would first encourage you to talk with your hospital's social worker.
Hello @annebauer19 and welcome to Mayo Clinic Connect. I am sorry to hear about your husband's diagnosis of pancreatic cancer. It sounds as if you have a plan in place for his treatment and that is always a good thing. I am glad that you have learned from the posts here in this discussion group. Connect does have some amazing members who post about their experiences. Patients have so much knowledge and experience and Connect is a place where they can share that information and those experiences.
I would like to invite some others to this conversation including @marvinjsturing @novak120 @kamnorris2.
Just a few questions, if you are comfortable answering them: Has Ken been given a timeframe for his radiation yet? Has his cancer been staged?
I look forward to hearing from you again. Will you continue to post as
you have more questions?
Hello I am Anne, my husband Ken was just diagnosed with pancreatic cancer in the last few weeks. Like all of you probably it felt like being hit by a truck. After a couple of weeks of roller coaster emotions we are now settling in to treatment. He will start chemo soon and then radiation and hopefully then surgery. We are of course very scared about chemo and how it will affect him. I must say it is very encouraging to hear from you who have been through this. I have already learned from your posts and will have a million questions.
Hello to the Group, my name is Olga, I have not yet been diagnosed, but am attempting to get to that stage. I have only Medicaid, and am in FL. so I have limited options at this point. I have just completed an MRI as well as consulting a qualified Gastro here in FL. paying cash for a single visit. The next step for me is seeing a Kidney specialist this week so I'll know a bit more after that, as he will review the results of my MRI. I'm hoping there is some option for getting a consult from a Mayo Dr. to help in the diagnosis from the MRI and other material I've put together in the last couple of years with the symptoms I've been experiencing. I'm in a situation where I have to limit my use out of plan Dr's but I feel it will be worth it to get a one time opinion which I hopefully will be able to relay to my limited Medicaid plan situation. Is there any means whereby I could enlist the expertise of a Mayo Dr. for a review of what I have? If you know of a way to do this I'd be very grateful....if that is possible please let me know. Thanks Olga
Hi I have a recurrence of pancreatic cancer in same bed as the first tumor (had a distal pancrectomy and splenectomy) in jan 2018. Then almost 3 years NED and cancer is in my lungs in small nodules. Lung ablations worked great once nodules were large enough but now too many so starting a trial on 15th of June. Ive also just had the shorter 5 days of radiation treatment. Im wondering if anyone else is in a similar situation? Im also wondering about how long I have so I can make decisions and I know no-one can truly answer but a ball park number. So far it's been a year and slow growing, well differentiated cells. I have none of the known genes but my father died of pancreatic and one second cousin I never knew. Thanks for any feedback. My first name is Leigh
Thank you for the information about the nerve block. It sounds very successful.
Thank you for the welcome. Several of you had questions about my pain and the procedure that alleviated it....I had a Celiac Plexus Block done at the Mayo Clinic in Rochester. My pain was in my lower left abdomen, sometimes radiating to my back, and usually at a level of 3 but could get up to 6 or 7, depending on what or how much I ate, I suppose. My palliative doctor recommended I get the block done. It was a simple, short procedure, for which I was awake but relaxed. It reduced my pain level to 0 immediately and has lasted five months now.
@novak120 It is just about 7 years ago that I was diagnosed with pancreatic cancer. After my Whipple, I had 6 months of chemo (gemcitabine also known as gemzar). Because of a very rare reaction to the chemo, I lost most of my kidney function. After 5 years of scans that showed no evidence of cancer, I was able to get on the kidney transplant list at 2 transplant centers. Just over a year ago, we moved and I had to find a new oncologist. He wanted his own PET scan. That scan found that my cancer had returned. I was immediately taken off both transplant lists. I, too, have very limited options for treatment. Typical treatment is radiation and chemo. Doctors were concerned that chemo would further damage my kidneys so I did 25 rounds of radiation a year ago. Since that time, I have been going to Mayo every 3 months for a PET/MRI. So far, these scans have shown that my cancer is not growing or spreading. Because the cancer is not growing, there has been no treatment. If the cancer begins to grow I will need to start chemo. Because of lack of kidney function, I will have to have dialysis after every chemo treatment. It has to be really hard to be going through cancer again for the 4th time. I fully understand the struggles you have with depression and anxiety. For me, I thank God for and enjoy every day of life that he gives me. Take it one day at a time and never ever give up.