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nogginquest
@nogginquest

Posts: 20
Joined: Mar 18, 2018

Pancreatic Cancer Stage IV and in partial remission

Posted by @nogginquest, Mon, Apr 2 10:24am

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!

REPLY

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

@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

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@ginpene05

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

Teresa

@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

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Gratefulness is important to a good quality of life. 🙂

@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

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

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/

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!

@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!

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

@colleenyoung

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

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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.

@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.

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

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

@beachgirl23, I'd like to bring you into this discussion about pancreatic cancer with @nogginquest, who is also in remission. I hope the two of you can connect here.

Beachgirl you mentioned that you are now getting followup care from an oncologist in a different state than where you had treatment and surgery and that a followup scan indicated scarring from the surgery. Now you are concerned about the cost of a PET scan and wonder if repeated PET scans will be necessary. I think that this would be a good question for the oncologist. It might be that only one PET scan is necessary to get a closer look at the scan to determine next steps. But only your oncologist would know for certain. Are you able to call your oncologist or post a message on a patient portal to get an explanation?

I'd like to also invite @marvinjsturing to this discussion, another person to connect you with @beachgirl23

@beachgirl23 I am a 4 year survivor of pancreatic cancer. My Whipple procedure was done at Mayo in Rochester in June of 2014. I had 6 months of chemo administered by an oncologist at my local hospital here in Iowa. I continue to meet with my local oncologist every 6 months for blood tests and a checkup. I also return to Rochester every 6 months for blood tests, a PET scan and a checkup with oncology. It is my understanding that the PET scans will continue every 6 months until I am cancer free for 5 years. I was told that after pancreatic cancer, doctors typically use a CT scan every 6 months to check for the return of cancer. Because of kidney problems, my body cannot handle the dye used with a CT scan, so I have been having PET scans instead. I know that each person is unique and therefore, the treatment prescribed by your doctor will most likely be different than the treatment I received. Never hesitate to bring your concerns and questions to your doctors. You are your own best advocate for your health. God bless you.

Thank you for your response! I had my pancreatic surgery done in Jan of this year in Fort Myers, Fl General Hospital by Dr. BLOOMSTON. He is great…got all the fingers of my cancer splosh out. Both he and the oncologist were amazed that it was gone. I moved back to RI and have been seeing recommended surgeon and his oncologist at major Clinic here in RI. I just had a ct sczn and because it shows scarring at surgery area they want me to do a pet
Scan for further investigation. I'm Leary since I know insurance only covers so many pet scans and ct scans per person. What is your advice on this?

I am not a doctor and I don't know your medical condition so I can't tell you what you need to do. I can only share with you what I experienced. The PET scans I have had after my surgery assured me that the surgeon had successfully removed all the cancer and the cancer has not come back. I am thankful that so far, my insurance has covered the costs of all my scans.

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