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

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You are amazing. Thanks for sharing your story

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@barbara333

I was Diagnosed with stage 4 pancreatic cancer in October of 2021. I had chemo every 2 weeks. In October 2022 the PET scan showed no cancer activity and the Ca19-9 was down in the 40’s. A second PET scan showed no cancer activity and my Ca19-9 is in normal limits. I drink green juice every day and take various vitamin and mineral supplements. My tumor is also over my major blood vessels and is not operable. I am continuing on chemo as there is not a protocol published fir treatment. There is hope. We never know when a miracle will occur.

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I'm interested in learning more about your "green juice" as well as the vitamin and mineral supplements you're taking. Do you care to tell us more?

I'm taking some algae pills (Bioage BSF) and believe I feel better when I do, but it's so hard not to be subjective (prey to wishful thinking).

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Thank you @stageivsurvivor for always providing such sound and practical advice based, not only on your amazing experience, but also your scientific research. Your willingness to take the time to share this knowledge is a gift to the world and this is a thank you note for it!! You are an inspiration, a rock, a guide and a wonderful part of this helping community. Thank you so much!

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@barbara333

I was Diagnosed with stage 4 pancreatic cancer in October of 2021. I had chemo every 2 weeks. In October 2022 the PET scan showed no cancer activity and the Ca19-9 was down in the 40’s. A second PET scan showed no cancer activity and my Ca19-9 is in normal limits. I drink green juice every day and take various vitamin and mineral supplements. My tumor is also over my major blood vessels and is not operable. I am continuing on chemo as there is not a protocol published fir treatment. There is hope. We never know when a miracle will occur.

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Barbara

I too have vessel involvement. I am over20 lbs underweight , skeletal as im 4’11
My son just got a juicer. Might I ask what you include in your green drinks and vitamin regimen? I think every little bit might help
Thank you
Mamarina

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I use Orgain Organic Superfoods Immunity Up for my green food, I eat berries in season and drink slot of orange juice and cloudy apple juice. When I was first diagnosed, I was so cold sensitive from oxaloplatin that I could not tolerate anything colder than room temperature. I take an organic multivitamin, fermented iron complex supplement, biotin, ALA fir nerves, vitamin c, ashwagandha, niacin, zinc, plant sterols, probiotic, Nexium, Pepcid, broad spectrum CBD oil, L arginine, Tumeric, cinnamon, neuroturna, calcium, vitamin d3, vitamin e, vitamin b12, folate, magnesium glycinate, and vitamin b2. I also eat nuts and have been off and on eating tomatoes and drinking V8 juice. I stopped all equal and Splenda type products though I still use a little erythrotol and mannitol and stevia. I have tried to stay away from chemicals and processed foods. I also drink cherry and grape juice. I eat a lot of beets and carrots. I add spinach to meat sauce and soups. Hope this is the additional information that you want. At my sickest, I only added about 3 ounces of water to the greens. Now I add about 4-5 ounces.

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Diagnosed in May of 2022, I have inoperable stage IV (tumor is in tail and involves veins and arteries with tiny spot initially seen in liver) and have had 17 sessions of Folfirinox-sometimes minus ironiteacan and as of recently minus oxiliaplatin. Except for chemo days and the overall reduced stamina, I feel healthy and keep myself busy and have no other health issues. Pet scans and CT scans which initially showed shrinkage (tumor is very small and no longer is there evidence detectable in liver) currently shows "stable". However, my CA19-9 is slowly creeping upwards-highest was 2558 and dropped to 65 in Nov of 2022, but now is 402. Did your CA19-9s do this? Should i be more worried than the oncologist lets on?? I am not at a pancreatic cancer center for oncology but have been advocating for myself with info I find on medical sites at JH, Mayo, and MSK. I will be traveling to MSK to receive MRI guided SBRT next month. I am not familiar with SoC?? I often feel I am only given standard treatment unless I present other options--it is so frustrating. Any advice/suggestions would be helpful-you give many of us hope.

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@barbara333

I use Orgain Organic Superfoods Immunity Up for my green food, I eat berries in season and drink slot of orange juice and cloudy apple juice. When I was first diagnosed, I was so cold sensitive from oxaloplatin that I could not tolerate anything colder than room temperature. I take an organic multivitamin, fermented iron complex supplement, biotin, ALA fir nerves, vitamin c, ashwagandha, niacin, zinc, plant sterols, probiotic, Nexium, Pepcid, broad spectrum CBD oil, L arginine, Tumeric, cinnamon, neuroturna, calcium, vitamin d3, vitamin e, vitamin b12, folate, magnesium glycinate, and vitamin b2. I also eat nuts and have been off and on eating tomatoes and drinking V8 juice. I stopped all equal and Splenda type products though I still use a little erythrotol and mannitol and stevia. I have tried to stay away from chemicals and processed foods. I also drink cherry and grape juice. I eat a lot of beets and carrots. I add spinach to meat sauce and soups. Hope this is the additional information that you want. At my sickest, I only added about 3 ounces of water to the greens. Now I add about 4-5 ounces.

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Barabara
Thank you so much. Its so hard navigating it all . With my duodenum stent It limits foods I can eat and I can only eat or drink small portions.
So your response was most helpful
🌷 Marina

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My husband, age 75, has been diagnosed with stage 4 pancreatic cancer that has spread to his liver and bones.
He has opted to forego any chemo. We are going to meet with the Oncology Palliative team next week.
His GI doctor is going to do an ERCP next week.
Has anyone experienced ERCP with stent inserted? What about Palliative care?
We are not sure what to expect.
Thank you for any comments.

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@mamarina

Barabara
Thank you so much. Its so hard navigating it all . With my duodenum stent It limits foods I can eat and I can only eat or drink small portions.
So your response was most helpful
🌷 Marina

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I am glad I could be of help. It is difficult navigating life. I decided to focus on positive things as much as possible and enjoy what I can do. Prayers helped me as well as offering encouragement to those around me

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I was diagnosed as stage 4 in july of 2022 with a ATM gene mutation.Not in any other organs but blood vessel involvement so not operable.I started on Gemicidine and abraxene for 5 months.I got so weak and sick they had to switch me to the folfirinox which has been much better.I get nausea but its maintained with meds.During this time I have been searching for clinical trials.My Doctor has been no help in finding trials or anything else for that matter.I'm getting the standard treatment ,which most doctors will do.I have finally gotten a call from Pittsburg cancer center that they have a clinical trial for me.I go there on friday.Its 4 hours from me but I will find a way to do it.either by renting a room ,cheap hotels,whatever.I feel this is my only hope to get rid of this.In Pa trials are limited.Noone does them in my area.You have to fight with everything you got if you want to live.I will fight until I can't go anymore.I have a 10 year old grandaughter that her mother is not in her life so she relies on me.I will fight until I can't fight anymore and thats the attitude you have to get.I have hit many brick wall and have been devastated many times.You get up,get over it and start a new fight.Wish me luck friday and I send prayer up for you all,fight on.

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