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.

Hi, nogginquest. Your post was interesting. I just got back from a car drive to Florida to see my sisters and some friends with my husband. On the way back we toured Williamsburg, Va., and I also loved the touring and am grateful to have good family and friends.

I am amazed at your markers showing how you are keeping the cancer at bay. The ways I watch for recurring Non Hodgkin Lymphoma is symptoms, white cell count, and Pet scans. I wish there was a marker test for my bad guys, but I am definitely grateful for having had Stage 1 and to be cured, for now. I listened to physician on Dr. Radio a few weeks ago who said that feeling grateful actually causes a release of endorphins. I am all about releasing endorphins, by exercising, smiling, interacting with friends and family, and eating beautiful food!

So good luck, cancer warrior. May you not be plagued by side effects or pain. gp

REPLY
@ginpene05

Hi, nogginquest. Your post was interesting. I just got back from a car drive to Florida to see my sisters and some friends with my husband. On the way back we toured Williamsburg, Va., and I also loved the touring and am grateful to have good family and friends.

I am amazed at your markers showing how you are keeping the cancer at bay. The ways I watch for recurring Non Hodgkin Lymphoma is symptoms, white cell count, and Pet scans. I wish there was a marker test for my bad guys, but I am definitely grateful for having had Stage 1 and to be cured, for now. I listened to physician on Dr. Radio a few weeks ago who said that feeling grateful actually causes a release of endorphins. I am all about releasing endorphins, by exercising, smiling, interacting with friends and family, and eating beautiful food!

So good luck, cancer warrior. May you not be plagued by side effects or pain. gp

Jump to this post

@ginpene05

Thanks for reminding us about the production of endorphins! Gratefulness has a big impact on how we feel.

Teresa

REPLY
@ginpene05

Hi, nogginquest. Your post was interesting. I just got back from a car drive to Florida to see my sisters and some friends with my husband. On the way back we toured Williamsburg, Va., and I also loved the touring and am grateful to have good family and friends.

I am amazed at your markers showing how you are keeping the cancer at bay. The ways I watch for recurring Non Hodgkin Lymphoma is symptoms, white cell count, and Pet scans. I wish there was a marker test for my bad guys, but I am definitely grateful for having had Stage 1 and to be cured, for now. I listened to physician on Dr. Radio a few weeks ago who said that feeling grateful actually causes a release of endorphins. I am all about releasing endorphins, by exercising, smiling, interacting with friends and family, and eating beautiful food!

So good luck, cancer warrior. May you not be plagued by side effects or pain. gp

Jump to this post

Gratefulness is important to a good quality of life. 🙂

REPLY
@ginpene05

Hi, nogginquest. Your post was interesting. I just got back from a car drive to Florida to see my sisters and some friends with my husband. On the way back we toured Williamsburg, Va., and I also loved the touring and am grateful to have good family and friends.

I am amazed at your markers showing how you are keeping the cancer at bay. The ways I watch for recurring Non Hodgkin Lymphoma is symptoms, white cell count, and Pet scans. I wish there was a marker test for my bad guys, but I am definitely grateful for having had Stage 1 and to be cured, for now. I listened to physician on Dr. Radio a few weeks ago who said that feeling grateful actually causes a release of endorphins. I am all about releasing endorphins, by exercising, smiling, interacting with friends and family, and eating beautiful food!

So good luck, cancer warrior. May you not be plagued by side effects or pain. gp

Jump to this post

Yes, it is very important. I find I have a better quality day when I try to find something good.

REPLY

Hello @nogginquest

Because of your pancreatic cancer history, I thought you might be interested in viewing and/or participating in a Mayo webinar this Monday, Oct. 29.

Here is the link for more information, https://connect.mayoclinic.org/webinar/video-qa-about-the-early-detection-of-pancreatic-cancer/

REPLY

I just started my routine oncologist checks in a different state than my treatment and surgery. My first scan here indicated scarring from the surgery. The oncologist wants me to have a pet scan to further investigate the scarred area ....is this necessary?? What happens if I really need a pet scan further down the road.....I cannot afford the cost of this test on my income!

REPLY
@beachgirl23

I just started my routine oncologist checks in a different state than my treatment and surgery. My first scan here indicated scarring from the surgery. The oncologist wants me to have a pet scan to further investigate the scarred area ....is this necessary?? What happens if I really need a pet scan further down the road.....I cannot afford the cost of this test on my income!

Jump to this post

Hi @beachgirl23, welcome to Connect. I see this is your first post. Do you also have eye melanoma?

REPLY
@colleenyoung

Hi @beachgirl23, welcome to Connect. I see this is your first post. Do you also have eye melanoma?

Jump to this post

No, I just didn't know where to post my dilemma and the post I replied also talked about routine check up appt after surgery happened.

REPLY
@beachgirl23

No, I just didn't know where to post my dilemma and the post I replied also talked about routine check up appt after surgery happened.

Jump to this post

I will get you connected in the right place. What type of cancer do you have?

REPLY

I survived pancreatic cancer.....successful surgery in Jan 2018.

REPLY
Please sign in or register to post a reply.