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!

Hi @beachgirl23 and @marvinjsturing, you'll notice that I moved your messages to this discussion about pancreatic cancer and out of the discussion about melanoma of the eye. 🙂

It sounds like you are in good care, beachgirl. My recommendation is to talk to your doctors about the frequency and type of scan you need now and in the future. I don't want you to worry unnecessarily. As Marvin says, everyone is different. For you, the necessity of a PET scan may only be this once to examine the scarring closely. After that CT scans may be all that is necessary. No one knows excepts your cancer care team who are familiar with your situation specifically. Tell them your concerns about coverage. They can work with your insurance coverage and give you the right followup for you.

Does that make sense? I'd be very interested in hearing the result of you conversation with your oncologist. When are you scheduled for your next visit? When is the PET scan?

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@colleenyoung

Hi @beachgirl23 and @marvinjsturing, you'll notice that I moved your messages to this discussion about pancreatic cancer and out of the discussion about melanoma of the eye. 🙂

It sounds like you are in good care, beachgirl. My recommendation is to talk to your doctors about the frequency and type of scan you need now and in the future. I don't want you to worry unnecessarily. As Marvin says, everyone is different. For you, the necessity of a PET scan may only be this once to examine the scarring closely. After that CT scans may be all that is necessary. No one knows excepts your cancer care team who are familiar with your situation specifically. Tell them your concerns about coverage. They can work with your insurance coverage and give you the right followup for you.

Does that make sense? I'd be very interested in hearing the result of you conversation with your oncologist. When are you scheduled for your next visit? When is the PET scan?

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Thank you!! The hospital team is supposed to call me to schedule the pet scan….not yet at this time.
My next appt with current oncologist is Nov26th with blood work scheduled for then too.

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I read with much interest and enthusiasm your post with stage 4 Pancreatic Cancer. My wife who is in her mid 60's was recently diagnosed with stage 4 non operable pancreatic cancer which has metastasized to her liver. She has never smoked, only a few glasses of champagne a year, no family history of liver or pancreatic cancer, however some family cancer history, father lived into his late mid 80's mother is still living at mid 90's, grandmother 101, grandfather early 80's.
She had increasing amount of mid-back pain which she thought might be pancreatitis. Her local doctors set up an endoscopy and colonoscopy which showed some thickening on the duodenum wall and some irritation on her stomach lining. After a severe pain attack a week later she was set up with some blood work and a CT scan which was sent off to a liver specialist. He then ordered an MRI which she had 10 days later. The blood work showed her tumor markers to be at 1800 and there were a number of tumors on her liver the largest being approx 1 inch in size. The diagnosis was received during a phone call as inoperable metastasized pancreatic cancer, our world was crushed and our future was now in question!
While we do have a very good health care system here in Canada, some of our processes take time and I always worry that it is taking too long. She has an appointment for a liver biopsy in another 2 weeks, and then another week to analysis the sample. So the earliest she would be able to start chemo would be after Christmas. Just just trying to stay positive but the "hurry up and wait" is increasing our anxiety.

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@pamelaanne

I read with much interest and enthusiasm your post with stage 4 Pancreatic Cancer. My wife who is in her mid 60's was recently diagnosed with stage 4 non operable pancreatic cancer which has metastasized to her liver. She has never smoked, only a few glasses of champagne a year, no family history of liver or pancreatic cancer, however some family cancer history, father lived into his late mid 80's mother is still living at mid 90's, grandmother 101, grandfather early 80's.
She had increasing amount of mid-back pain which she thought might be pancreatitis. Her local doctors set up an endoscopy and colonoscopy which showed some thickening on the duodenum wall and some irritation on her stomach lining. After a severe pain attack a week later she was set up with some blood work and a CT scan which was sent off to a liver specialist. He then ordered an MRI which she had 10 days later. The blood work showed her tumor markers to be at 1800 and there were a number of tumors on her liver the largest being approx 1 inch in size. The diagnosis was received during a phone call as inoperable metastasized pancreatic cancer, our world was crushed and our future was now in question!
While we do have a very good health care system here in Canada, some of our processes take time and I always worry that it is taking too long. She has an appointment for a liver biopsy in another 2 weeks, and then another week to analysis the sample. So the earliest she would be able to start chemo would be after Christmas. Just just trying to stay positive but the "hurry up and wait" is increasing our anxiety.

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Hello @pamelaanne and welcome to Connect,

I am sorry to hear of your wife's recent diagnosis of inoperable metastasized pancreatic cancer. I can certainly understand why you would say, "our world was crushed." I would encourage you to look at a video about early detection of pancreatic cancer. This video also has information about pancreatic cancer care. Here is the link,
https://connect.mayoclinic.org/webinar/video-qa-about-the-early-detection-of-pancreatic-cancer/ You will also see responses from others who have been diagnosed with this disorder.

Connect, also has another discussion on this topic at this link, https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/. I feel sure that you will learn more about this by reading the posts and asking questions of the members who have posted.

You mentioned that the first symptom was mid-back pain. How is she feeling now? Are there any other symptoms?

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@hopeful33250

Hello @pamelaanne and welcome to Connect,

I am sorry to hear of your wife's recent diagnosis of inoperable metastasized pancreatic cancer. I can certainly understand why you would say, "our world was crushed." I would encourage you to look at a video about early detection of pancreatic cancer. This video also has information about pancreatic cancer care. Here is the link,
https://connect.mayoclinic.org/webinar/video-qa-about-the-early-detection-of-pancreatic-cancer/ You will also see responses from others who have been diagnosed with this disorder.

Connect, also has another discussion on this topic at this link, https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/. I feel sure that you will learn more about this by reading the posts and asking questions of the members who have posted.

You mentioned that the first symptom was mid-back pain. How is she feeling now? Are there any other symptoms?

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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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@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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