Pancreatic Cancer Stage IV and in partial remission

Posted by nogginquest @nogginquest, Apr 2, 2018

I was diagnosed with stage IV pancreatic cancer July of 2017. The tumor markers were 6670. A 2 inch tumor was found in the head of my pancreas, and nearly two dozen tumors we're found in my liver. There is a suspicious spot in my lung, but we don't know if it is cancer, fungal, or bacterial.

I started a chemo regimen of Folfirinox every two week in August of 2017. It was super rough at first. I vomited several times a day, stopped eating, and lost a tremendous amount of weight. I was also on 60mg of morphine and several Norco breakthrough pills to combat the pain from the cancer.

At one point I was taking 36 pills a day to combat the side effects of chemo and painkillers. However, slowly but surely I weaned off the pain meds and the symptoms subsided.

In October my scans showed a small decrease in tumor size, and my markers dropped down to the 3000's. I traveled to Boston to see my daughter, and we visited Salem, Mass dressed as witches. Before that trip I slept a lot, had little energy, and felt hopeless. However, when we decided to go I started preparing for the trip. I spent a little time every day walking on a treadmill. I started at the lowest setting for about a minute and worked my way up to 45 minutes at a 2 setting.

Salem was amazing. I walked the whole time, toured museums, and spent quality time with my family.

In December my scans showed a significant reduction in tumor size and my markers were in the 1300's. I was no longer taking any pain pills, and I started working part-time again.

My last two sets of scans have shown , as the doc put it, the tumors in my liver have resolved themselves, the tumor in my pancreas is a fuzzy haze, and the spot in my lung cavitated. My tumor markers were and have remained in the mid-100's. At that point I was told I was technically entering remission.

Since the tumors in my liver have resolved, I am now eligible for radiation. I begin radiosurgery next week. We suspect there are cancer cells living in the pancreas, and we hope by attaching the original source we can reduce the cancer cells and extend my life a little longer.

I understand that this is not a cure. I also understand that I will most likely be on chemo the rest of my life, but I sure appreciate the extra time I've been gifted.

I do not live near the Mayo, but all of my oncologists have been Mayo trained. However, I have been fortunate enough to to visit the Mayo and meet the fantastic oncology team that collaborates with the local docs on my case.

It is my hope that the radiation will work wonders and the chemo will continue to keep me in the maintenance phase.

Stay strong cancer warriors!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@pamelaanne

Yes thank you, I have read all of the posts and the one from @nogginquest provides a guarded but very positive prospect.
Presently my wife is suffering a fair bit of mid-back pain and is now taking 4 doses of diclofenac 50 mg suppositories a day (every 6 hours) and potassium chloride as her potassium levels have been low . She also has diarrhea and was given a prescription for some pancreatic enzymes. Interesting to note that she hasn't shown any signs of yellowing skin or had fatty substances in her stools. Other than the diarrhea her energy levels are dropping off and she is still loosing some weight, but is trying to eat well.
We were both on the Ketogenic lifestyle (low carbs and sugars replaced with high fats. protein and lots of vegetables ) as her doctor told her last year after knee replacement surgery that it would help to shed some extra pounds. To date she has lost 65 lbs, now down to 175 lbs, however the last few months she has lost most of the weight, probably more related to the cancer than the lifestyle. Her medical Oncologist advised her to get off the Keto lifestyle and eat a well balanced diet.
We will be talking to the dietitian tomorrow so will have a better idea as to what is best to eat moving forward.

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Hello @pamelaanne ,

I was just thinking about you and your wife. I hope the appointment with the dietician went well. Did you get some new ideas regarding helpful foods to maintain weight and energy?

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@hopeful33250

Hello @pamelaanne ,

I was just thinking about you and your wife. I hope the appointment with the dietician went well. Did you get some new ideas regarding helpful foods to maintain weight and energy?

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Yes thank you, we spent about an hour in a video conference with the dietitian and we were sent several pages on types of foods to eat and ones to avoid.
Generally foods high in protein are recommended for your body to endue some of the symptoms of chemo therapy, however we are not their yet, Liver Biopsy scheduled for the 17th and meet the oncologist on the 27th. Also foods high in fats should be avoided in order to put less stress on your pancreas.
Her weight has become more stable and she is doing some exercise, energy levels have stabilized as well. Still trying to be positive.

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Thank you, @nogginquest, for sharing your story of survival with stage IV pancreatic cancer. You give us hope! My husband is in the throes of it now, and it encourages us to see positive stories such as yours.

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My CA19-9 was 1847. Has anyone experienced this high of a number and it didn't turn out to be pancreatic cancer.?

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You have an amazing story and attitude. I wish I could inspire my husband to walk more and take charge of his health. He just lays on the couch day after day and doesn’t try to get better. Just pops another pill!

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That’s the kind of stuff we want to hear. Cancer Warriors love it.

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My wife has been diagnosed with Melanoma of the eye! Any help that anyone can give will be greatly appreciated.

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Your journey gives me hope. My husband also has Stage4 Mets to liver. It’s so great to see someone who started in 2017 and also wasn’t a candidate for surgery. Thank you for posting.

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I just noticed this was posted in 2018 and am wondering how the radiation went and what came next. We’re there any updates ? I can’t find them.

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