Pancreatic Cancer Group: Introduce yourself and connect with others

Yes, he has already gotten the affects of cold things,hands and feet,bundled up like a Eskimo, he has five more treatments, then back to oncologist in may,hopefully they will consider surgery, his is on the tail 2 and a half cm. Keeping up with prayers and Hope
God Bless Everyone Fighting This Disease.

@gamaryanne Thank you so much for this! It is wonderfully comforting and hopeful, and I am so grateful that you thought to write.

I think that part of the horror is the loss of control over my life, and being a victim. You're right -- I don't have to be, especially now while I'm still feeling well. And I have confidence that the team of doctors already invested in my case will give me the best care I can have.

My wonderful wife and I are determined to control everything that we can about this disease and the rest of our lives, and I deeply appreciate the reminder from you and @patti303 to look forward, appreciate and enjoy the days I have ahead and focus on survival.

It's a scary diagnosis for sure, but "woulda, shoulda, couldas" is a path I would recommend you quickly depart. No one, and I mean NO ONE, has the answers to pancreatic cancer onset. They can see, evaluate and name the mutations in the tumors, but the factors that cause those changes in the individual body are at this time statistical models with many caveats.

To be clear, I'm neither a doctor or a scientist, but with my diagnosis I've been doing a lot of reading, doing my best to learn as much as possible and this is how I look at it. Others may see things differently or are far more knowledgeable, so I welcome your opinions or facts. Let's look at our issue -- pancreatic cancer. We comprise only 3.3% of all diagnosed cancers. A pittance in the scope of things (not to us personally, of course). Of that small percentage of cancers, 90% of the mutations are of the KRAS variety (KRAS also appear in a far smaller percentage in other cancer types, CRC for example). Of that subset, about 40% of the KRAS variety "appear" to have some smoking connection (second hand, ex or active smoker, industrial exposure, etc.) That leaves 60% of the KRAS tumors that do not statistically have a strong enough suspected activator to categorize now. They could be hereditary, a chemical exposure through food, water, stress, you name it -- take a guess. Don't forget the remaining 10% of pancreatic cancers that comprise a mixed list of different mutations, some never seen before.

I have a friend, younger than most here in this forum, who is an amazing top performing athlete with advanced educational degrees, high income who can afford the best food and the safest living environments who has developed a pancreatic tumor. Why? How? Who knows? Please, stop kicking yourself about things you can not change and may have had absolutely nothing to do with your diagnosis. There is a great deal of information available these days and so much to learn. What matters is where do we go from here? I always recommend to learn as much as possible and make a plan and then get moving on that plan. Not easy to do. Not easy at all. It's important to take control of what we can so we can take the next step forward. I don't know about you, when I look behind, I often trip over my own feet. That only causes me more damage. I wish you only the best in your journey and I'm sending you love.

Horror is an appropriate description of this diagnosis. I too had liver Mets and was diagnosed Stage iv. Once I had a second opinion I chose to be determined to be one of the 12% that make it past 5 years. I also began to think tactically-cleaning out closets and drawers, getting work done at my house—things I don’t want to leave behind for others to plow through. After all-we will all leave this Earth one day so why not have it done??
I prayed for a doctor that was uniquely involved in pancreas AND liver cancer. That person has moved me from Stage IV to currently NED. The internet will scare you-it is indeed an ugly silent killer. But there are many survivor stories too. And don’t give up doing things you love! Play golf, work part time, take on volunteer roles. Whatever. But don’t give in to becoming a victim. The world needs you to be out there! God bless you…

Be hopeful and confident!
My numbers were much higher when I started that regimen and it eventually brought my numbers to the normal range so other steps could be considered. The treatment can be tough, so be sure he is getting protein and rest. I worked all through my treatment (except for those 3 days plus 2 to rest) and I must say the work was a pleasant distraction. He will develop an adversity to any cold drinks and perhaps some neuropathy-but small sacrifices to get on the healing journey. Keep us updated!

The things that have been helpful to me are love of family and friends, therapist, spiritual practices. Pancreatic cancer is my third cancer diagnosis but I can recall very clearly the first diagnosis, the feeling of unreality, how could this be? I was 48 at the time and my children were still young. I think the shock just wore off as I got busy will getting my treatment going.

As to what was done in the past, even if you hadn't had a less than optimal lifestyle, the cancer might have occurred now. I think you are wise to pick a burial plot, I believe that facing the fear of death directly is very helpful. I have been making a practice of this.

My first thought with my third diagnosis was to make sure my will etc was in order. I have gotten to work on cleaning out my house so my survivors will not have to do it. I worked on lining up my doctors for getting the best possible treatment available to me. If I feel well today, then all is well today and that is enough. Now I find myself being more able to appreciate the blessings of everyday life. I often take walks with friends. I found myself sending a message to my friend, letting her know how much I appreciated seeing her and how much I enjoyed our walk.

I read a book called One Path Among Many: A cancer patient's experiences and insights about his personal journey, by Robert Koshinskie to be helpful. Also a book by Henry Marsh, And finally. This is about a patient's experiences with prostate cancer. I believe it addresses a lot of the issues that cancer patients face in their struggles to cope with cancer diagnosis and treatment.

Sharing your story seems like an excellent first step to rediscovering your life. Thank you for sharing your story.

I almost feel as if I don't belong here yet, and yet I don't know where else to go to express myself.
I'm nearly 71 and have been preliminarily diagnosed with pancreatic cancer spread to my liver. I have a needle biopsy scheduled for next week.
I have no symptoms that I can tell; maybe a little soreness in the lower right of my back. I would still be oblivious if the spot hadn't turned up on a CT preparatory to a heart valve procedure that will now be put off for at least a few weeks.
I am consumed with guilt for having been overweight nearly all my life, although in the last couple of years I dieted and exercised to a normal weight. For nearly all my life I ate poorly, drank too much although I have had no problem stopping now, and lived in a very stressful career for 50 years until I retired two years ago this month.
My wife and I are looking for burial plots today. Please don't laugh; I know that nearly everyone here is in a situation much more dire than mine, and I feel awful about unburdening myself here. I can imagine how many people would gladly trade places with me.
My wife is being wonderful. She cries, and I've told her that however she feels is exactly how she should. At this point, of course, we don't know if my time will be months or years, or what the journey in the meantime will be.
I think I am angry with myself for having blown what should have been the happiest years of my life, and especially for having cheated my wife of them. The thought of her alone grips me in a way worse than the prospect of my own death, and I almost can't bear it.
So, my question for you: How did you get past the first wave of horror at your diagnosis, to best take advantage of this time before treatment of not knowing what's ahead? I imagine that the rest of my life will be a kind of purgatory for my wife and me; how have you dealt as constructively with that as you could?
I'm sorry if this seems so infantile as to be absurd, but I don't know where else to go with it.

I just finished 12 rounds of Folferinox, as your husband is receiving. I am stage 1b after a distal pancreatectomy. It's a scary ride, but it helps to know there are others in the boat with you. I could not have gotten through without the support of my wife. The whole ordeal can be draining, so I tried to enjoy the days I felt ok. I hope your journey goes well. Let me know if you have any questions. Take care.

Hello, my husband has been recently been diagnosed with pancreatic cancer stage 11b.
He has started chemo last week,5 hr. IV,then sent home with a pump for 46 hrs. His regiment is ( fluorouracil, irinotecan,leucovorin,oxaliplatin.
Very scared, hoping this chemo work. His C19 blood work was at 2200, before treatment.
5 more treatments to go to see if they can operate.

It is not Whipple surgery. I honestly don't know exactly what Dr. Truty calls the surgery except for the fact that both the stomach and pancreas are 100% removed.