What is it like after Whipple surgery plus 1 1/2 years?

Posted by dakotarunner @dakotarunner, Aug 16 9:38pm

Hello to everyone! I have not posted on this site for some time, but realize there are continually those folks who are facing pancreatic cancer, and wonder what post Whipple surgery is like. I know each of us gets over it in a different way, but will run what my last 1 1/2 years have been. I had surgery at Mayo in Rochester on 2/8/19. Made the mistake of eating too much when I went back on solid food ( I had not had any food by mouth since 1/3/19). Big mistake, but I survived. I started chemo about 9 weeks afterward (Folfirinox). After I got to the sixth treatment I was ready to quit, but my wife (God bless her) talked me into sticking it out. It was not fun.It beat the snot out of me physically, emotionally and mentally , but I finished the 12 sessions. It took me about 6 -7 weeks to get over the effects. I was told that this recover times varies greatly among people in treatment. Went to Vegas in December for the NFR and some concerts and felt great.
The main downside of the Whipple was, and still is in my bowel habits. Sometimes things go well, other times I only get ab out a 5 -10 second warning after the first urge until the movement. There have been some messy pants, and some tears were shed the first few times it happened, but with time, things have gotten better. I have started taking Gas-Ex, and it seems to be making a big difference for me. I also take Creon with my meals. No foods seem to upset me, and I eat like a horse. I had lost around 50 pounds during the illness and post surgery, but have been able to gain about 22 pounds back. Still working on another 10 pounds. I am semi-retired, working 3 days a week, and on my off days, keep as active as I ever did with the homeowner activities of owning an acreage and a number of horses. Only changes are I am not as strong as I was before cancer, and I have been know to take a nap now and then.
What I would like to say to people facing pancreatic cancer is that it will not be easy. I was so sick for the month before surgery that mentally I was a wimp. If I had to go thru it again, I would be in a more ready and positive state of mind. As far as the chemo, if I have to do that again, I will, only this time in a better mindset, and realizing it would knock me on my ass for a while.
When people ask me how I feel, I tell them that I feel really, really good, which is the truth. I have been one of the lucky ones when it comes to pancreatic cancer. 2019 was not the best year I have ever had, but I truly feel it was a blessing. For those facing pancreatic I can only say be as positive as possible. I know this easy to say and hard to do, Readily accept the prayers for you, and also to accept help when offered. It will be a rough road, but stay positive. Like my Doctor at Mayo told me “I was one of the lucky 20%”. I thought lucky hell! Then he added that I was one of the lucky ones who could have surgery. It sure changed my mind in a hurry.
Best to all who read this, and prayers to all.

Thanks Dakota, yes, it's hard to remain positive when you read scientific papers that describe pancreatic cancer as a particularly "deadly" form of cancer. I'm not one of the lucky ones in that I am not a surgical candidate since there is metastasis to the liver. Nor could I tolerate folfirinox, but I had 18 months of chemo with various combinations with good control of tumor growth. I think this experience has taught me to enjoy life moment to moment and not have to have everything planned. I think digestive system cancer is a whole different animal and I've been very disappointed in the nutritionists' information and advice. I'm still doing more digging on that, but I also don't want to spend too much time researching about my disease. I just want to live and enjoy life, knowing my days are numbered. I admire you having horses whom I consider great healers, but I know how labor intensive that is. I'm very fortunate to have a couple friends with horses who are generous to let me come and groom or just hang out with the herd. Standing near a horse is in itself a lesson in mindfulness. Thanks for sharing your journey.

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Would you share how you received your diagnosis? My mother died with pancreatic cancer in 1998 and it remains one of my biggest fears. Her physicians planned to do a Whipple, but discovered during surgery that the cancer had spread everywhere. She only lived three months after the diagnosis. I am told that my brother and I could be at a higher risk of developing PC and we are wondering if there are any signs to watch for in order to get an earlier diagnosis.

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Well, I will try this again, I had written a reply, but seemed to have lost it somewhere along the lines.
How I received my diagnosis, the long version. In early Oct of '18, I was having a lot of stomach pain at night. It would start low in my abdomen, and slowly move upward. The only way I could get rid of it was to get up, walk a bit, and then be able to belch (loud and a lot). Things kept getting worse, and I called to set up an appointment with a gastroenterologist, but could not get in to see one till Feb of '19. December was hell, with lots of pain. Then one gastro Dr. said he could endoscope me 1/3/19. He could not get the scope past my stomach, and when he removed it, I projectile vomited what he thought was two weeks worth of food. I woke up in the ICU, and ended up being in the hospital for 2 weeks. Testing was inconclusive, but a Whipple was what they recommended. Had a drain tube and a feeding tube put in (ended up with the feeding tube having to be put back in 3 times when it kept slipping out. During this time I got some what fed up and made an appt. at Mayo. They got a scope tube past my stomach, but could see no sign of cancer, although they felt it had to be the problem. My wife and I sat down and had a talk with Dr. Truty, and he said I needed the Whipple, and soon, as I was going down hill rather quickly. Dr. Nagorney did the surgery and was surprised with what he found The cancerous tumor was was attached to the outside of the pancreas, and had wrapped it self around my duodenum, having it almost squeezed shut. They removed a part of my stomach, 40% of my pancreas, all the gall bladder and all the duodenum. They also took a 12" section of my transverse colon out that had cancer cells growing on the surface.

Due to all this, I was worried about my children and the possibility of cancer. I had surgery in "04 for prostate cancer, and now with the pancreatic cancer, my one son was pretty shook up. I was able to do some testing where a blood sample was taken, and I had to answer a bunch of questions regarding my health history and that of my ancestors. When this was all computed, there was no known marker to indicate that my children would be at any great risk for pancreatic cancer, but get this, Beside the prostate cancer and pancreatic cancer I had already been blessed with, I was also at risk for breast cancer! Noting like hogging a bunch of cancers.

I do not worry, or look over my shoulder regarding any of my cancers, It is what it is what it is. For me, I think the diagnosis of cancer was harder on my wife and family that it was on me. Getting to the diagnosis was far more frustrating and aggravating than the diagnosis.

Gods blessings Best to you and your loved ones. If you ever want to talk about it, let me know and I will get you my phone number.

Liked by karolmac

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@that_girl

Would you share how you received your diagnosis? My mother died with pancreatic cancer in 1998 and it remains one of my biggest fears. Her physicians planned to do a Whipple, but discovered during surgery that the cancer had spread everywhere. She only lived three months after the diagnosis. I am told that my brother and I could be at a higher risk of developing PC and we are wondering if there are any signs to watch for in order to get an earlier diagnosis.

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That girl, just to add my diagnosis story, I first started having pain just under the rib cage on the right side as well as some digestive issues in July 2018. There were some changes in bathroom habits, such as urgency, grayish soft stools, undigested food (one learns to talk freely about poop when we have pancreatic cancer). I had endoscopy, which was normal and subsequent reassurance from my physician. When symptoms persisted I had an ultrasound of gallbladder which was also normal. Again I was reassured nothing was wrong. Throughout the fall of 2018 symptoms continued and I started using a heating pad on my stomach to ease the pain so that I could sleep. A colonoscopy in October was normal and again I was reassured and told that we may never find the cause of belly pain. Finally, after being pretty assertive, I was given a CT scan in December and that showed a mass on the head of the pancreas. A biopsy confirmed it was an adenocarcinoma and I received this news on January 2 of 2019. It took months to get my diagnosis because I think there are many causes of belly pain and few of them serious, so it took some assertiveness on my part for them to keep looking. This is a relatively rare cancer, but there is no screening tool for it, and presenting symptoms can be ambiguous. Please don't live in fear, but if you should develop symptoms that you know something isn't quite right, be your own advocate.

Liked by cehunt57, karolmac

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Prayers to you.

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Thanks for sharing.

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In reply to @jamesbmakos "Prayers to you." + (show)
@jamesbmakos

Prayers to you.

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Thanks!

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