Treatment options for pancreatic cancer stage 4?

Posted by nunz12 @nunz12, Nov 14, 2022

Hi I joined on behalf of my beautiful sister in law to seek information on her behalf. It’s been a nightmare she just turned 40 and had back pain went to er and they did ct scan they said she has vessels wrapped in pancreas cancer and vessels of liver too. She has a mass behind her stomach leaning on her spine too. They said not operable. Her pain is unbearable on morphine every two hours. After 3 weeks in hospital and biopsy done confirmed pancreas was primary source. Just did 5 days of radiation pain more unbearable due to inflammation. She is very weak and always in pain. One oncologist wants to start chemo right away due to aggressiveness. She has two small children and is feeling desperate for some pain relief so she go home.
Doctors say it’s complicated because pancreas vessels and liver vessels are enveloped in cancer. Can anyone explain or give any advice what to try?
Thank you

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

@mayoconnectuser1

deec2,

I am assuming from your specificity of size and locations that your husband has had CT and PET scans?

What is his CA 19-9 tumor marker blood work number?

It sounds as if a neoadjuvant approach with chemo has been decided - I think this means the intent is for the chemo to control and perhaps shrink the cancer.

Jump to this post

His CA 19-9 was over 23,000.
We meet with the Oncologist next week. So unsure of what chemo treatment he will get I do know they said they want to be aggressive because he is healthy. Just unsure what to expect. Our lives have been turned upside down the past week.

REPLY
@deec2

My husband has just recently been diagnosed with pancreatic cancer with metastasis to the liver. Mass is 6 cm × 5 cm and several lesions on both lobes of the liver. What can I expect? He will begin chemo next week.

Jump to this post

You may not want to hear this - I certainly didn't when my husband was diagnosed, but it is almost impossible to know what to expect. Patients responses and side effects are so varied and I haven't found any research to predict which path they will take. Some are almost debilitated by folfirinox and some are only fatigued with some neuropathy - same thing with gemcitabine/ abraxane. Some have an excellent response to one or the other or both and some do not. I have found nothing to predict who will react in which way.
While researching, I kept running across posts saying Don't Lose Hope! but my thoughts were always - It's stage 4 PC, there is almost no hope. Here we are 6 months later. My husband has responded very well to folfirinox and feels much better than he did before chemo. We have found a doctor willing to try innovative treatments (and who also isn't convinced the spots on the liver are mets) and I finally have some of that hope that I had initially lost. That is our 4th opinion.
I think the best advice I can give you is to do all the research that you can but keep in mind that PC's path is very unpredictable, don't lose hope as you read all those posts with unfavorable outcomes, get as many opinions as you can (not all doctors have the same knowledge), contact pancan.org and get genetic testing done, spend your time together doing the things you want.

REPLY
@smurf343

You may not want to hear this - I certainly didn't when my husband was diagnosed, but it is almost impossible to know what to expect. Patients responses and side effects are so varied and I haven't found any research to predict which path they will take. Some are almost debilitated by folfirinox and some are only fatigued with some neuropathy - same thing with gemcitabine/ abraxane. Some have an excellent response to one or the other or both and some do not. I have found nothing to predict who will react in which way.
While researching, I kept running across posts saying Don't Lose Hope! but my thoughts were always - It's stage 4 PC, there is almost no hope. Here we are 6 months later. My husband has responded very well to folfirinox and feels much better than he did before chemo. We have found a doctor willing to try innovative treatments (and who also isn't convinced the spots on the liver are mets) and I finally have some of that hope that I had initially lost. That is our 4th opinion.
I think the best advice I can give you is to do all the research that you can but keep in mind that PC's path is very unpredictable, don't lose hope as you read all those posts with unfavorable outcomes, get as many opinions as you can (not all doctors have the same knowledge), contact pancan.org and get genetic testing done, spend your time together doing the things you want.

Jump to this post

Always stay hopeful and positive. I know it's not possible all the time. Every person is going to react to the treatment in a different way. I am on my second recurrence. The protocol is suppose to be three weeks of chemo followed by an off week. My ANC has a very hard time bouncing back so I get chemo every other week. As far as side effects. I am tired all the time, but not much other than my hair falling out. My head is buzzed. I know when I stop chemo it will grow back so no big deal. Except it has been a little cold here. I always wear a hat.

REPLY

My husband is on his 9th cycle of Gemcitabine, Abraxane and Pamrevulab in the Precision Promise Trial. His tumor has shrunk by 50 percent and his CA 19-9 has gone from 4900 to under 200. He has issues with platelets so often needs a shot beforehand. The anti nausea drugs help considerably before his infusions along with hydration during and a very low dose of steroid. His hair is actually growing back during treatment. I hope they manage the side effects as best they can for you. Exercise has helped a lot also - tries to get in the 10,000 steps a day but on tired days just does a couple short walks.
He is stage 4 Mets to liver.

REPLY
@smurf343

You may not want to hear this - I certainly didn't when my husband was diagnosed, but it is almost impossible to know what to expect. Patients responses and side effects are so varied and I haven't found any research to predict which path they will take. Some are almost debilitated by folfirinox and some are only fatigued with some neuropathy - same thing with gemcitabine/ abraxane. Some have an excellent response to one or the other or both and some do not. I have found nothing to predict who will react in which way.
While researching, I kept running across posts saying Don't Lose Hope! but my thoughts were always - It's stage 4 PC, there is almost no hope. Here we are 6 months later. My husband has responded very well to folfirinox and feels much better than he did before chemo. We have found a doctor willing to try innovative treatments (and who also isn't convinced the spots on the liver are mets) and I finally have some of that hope that I had initially lost. That is our 4th opinion.
I think the best advice I can give you is to do all the research that you can but keep in mind that PC's path is very unpredictable, don't lose hope as you read all those posts with unfavorable outcomes, get as many opinions as you can (not all doctors have the same knowledge), contact pancan.org and get genetic testing done, spend your time together doing the things you want.

Jump to this post

This is very good advice. At this point in my life, it's hard for me to stay positive at times knowing what a terrible cancer I have, but I really try to focus on my family and my relationships and to be thankful for each day.

REPLY

14 rounds of folfurinox shrunk tumor in tail of pancreas as well as metastases in liver. I had Y90 in September to liver tumor cluster and pancreadectomy in December. After y90 ca19-9 went up but is trending down. Was in normal range prior. Post Ct scan shows all clear except the liver. PET scan is next. Then the what’s next. Assuming PET scan concurs with CT, Liver surgery or more chemo are being discussed. Has anyone been down this path?

REPLY
@gamaryanne

14 rounds of folfurinox shrunk tumor in tail of pancreas as well as metastases in liver. I had Y90 in September to liver tumor cluster and pancreadectomy in December. After y90 ca19-9 went up but is trending down. Was in normal range prior. Post Ct scan shows all clear except the liver. PET scan is next. Then the what’s next. Assuming PET scan concurs with CT, Liver surgery or more chemo are being discussed. Has anyone been down this path?

Jump to this post

@gamaryanne, I moved your questions about treatment options for stage 4 pancreatic cancer after pancreatectomy to this existing discussion:
- Treatment options for pancreatic cancer stage 4? https://connect.mayoclinic.org/discussion/just-diagnosed-pancreatic-cancer-stage-4/

I did this so you can read previous helpful posts and easily connect with members like @asugent @tpl @mayoconnectuser1 @deec2 @smurf343 @sprinter345

You may also be interested in these related discussions:
– Radioembolization for pancreatic cancer metastasis to liver? https://connect.mayoclinic.org/discussion/radioembolization/
– Anyone on Gemcitabine with Abraxane? How long? Effective? https://connect.mayoclinic.org/discussion/gemcitabine-and-abraxane/

What course of treatment have you decided on?

REPLY
@colleenyoung

@gamaryanne, I moved your questions about treatment options for stage 4 pancreatic cancer after pancreatectomy to this existing discussion:
- Treatment options for pancreatic cancer stage 4? https://connect.mayoclinic.org/discussion/just-diagnosed-pancreatic-cancer-stage-4/

I did this so you can read previous helpful posts and easily connect with members like @asugent @tpl @mayoconnectuser1 @deec2 @smurf343 @sprinter345

You may also be interested in these related discussions:
– Radioembolization for pancreatic cancer metastasis to liver? https://connect.mayoclinic.org/discussion/radioembolization/
– Anyone on Gemcitabine with Abraxane? How long? Effective? https://connect.mayoclinic.org/discussion/gemcitabine-and-abraxane/

What course of treatment have you decided on?

Jump to this post

Post pancreadectomy my ca19-9 has not gone back to normal. PET scan had a few concerning areas so an ultrasound of thyroid today. Depending on these results and the views after the doctors all review my case, it may be to remove the necrotic tumors in my liver.
Appointment tomorrow to hear their recommendation. Then must decide whether to look for second opinion. I’m determined to be one of the 12%

REPLY
@mayoconnectuser1

nunz12,

So very sorry to hear of your SIL's circumstances - pancreatic cancer is so devious in the way it grows so silently.

A stage 4 diagnosis, in most cases, does not leave many options. Chemo is usually started with the hope of some additional time.

My general understanding is that in most cases once PC has metastasized resection is no longer a course of action.

Has she had CA 19-9 and CEA blood tests? PET scans?

This is truly a horrible disease.

Jump to this post

My friend has stage 4 pancreatic cancer. Was diagnosed in November 2022. She is barely eating. Maybe just a couple bites of fruit and rice or sweet potato. I believe she is scared of eating because of the pain she feels. She is now constipated. Liver is also compromised. Under morphine every 2-3 hours. Is there anything one can do or say to make her feel any better? She decided not to go through chemo. The doctor said she would have need it for life every week. She has been subscribed to receive the service of hospice because she does not apply for Medicare nor Medicaid. Would it be risky to sit her in a wheelchair and drive her to the beach which she loves? Do you know if I would need a special permit from the people at hospice to do this? Thank you.

REPLY

Thank you for sharing your very difficult story. Your friend is lucky to have a caring friend like you. Most likely hospice will be responsive to your wish to take your friend to the beach and help as best they can.

REPLY
Please sign in or register to post a reply.