Living with inoperable pancreatic cancer

Posted by ajh5285 @ajh5285, Aug 26, 2023

Emphasis on living

How are you doing it? In other words, what factors do you identify as most important to staying alive? and how long have you been doing it?
I have little-no control over my current living circumstances, and know that stress probably contributes to my current malaise. I’m hoping to be able to hang on until the date of a planned move to what looks to be more congenial circumstances in another 2 weeks.

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@margefromwi

Thank you for your kind words. My mom died of gallbadder cancer, nine years ago, so I saw what she went through. She was diagnosed in early March and by the end of June she passed away. I look at this situation, it is what it is. I could go around screaming & cussing, being angry all the time or be down in the dumps, crying all the time. I don't think that would be good for me, probably raise my blood pressure or worse. I'm just doing the best I can & there are days that I'm down & not having a good day. Yes, I did have genetic testing of my tumor. I think it came back with ATM something. I had another genetic test done recently to see if any of my cancer cells had mutated in a cancer that has targeted treatments, I have the KRASG12 mutation but there is only trial therapy. I also think the ATM didn't have anything targeted too. Just had my chemo of gemzar & abraxane, feeling a little tired but otherwise okay. I also have many people telling me they are praying for me. This really humbles me when I'm told this and I wonder if I'm worthy of all these prayers of healing. Sometimes I over think things. Take care.

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I know about the feelings of not being worthy.
That's another topic I've been delving into online, since I have come to recognize what a potent influence those early impressions continue to exert throughout our lives.
I may be repeating myself, but when the idea occurred to me that even *I* am worthy of love, how shocking that idea seemed. And it's not as if I didn't already believe on an intellectual level that all of us embodied spirits are worthy of a simple, direct, uncomplicated love (dare I call it divine?).

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@margefromwi

Thank you for your kind words. My mom died of gallbadder cancer, nine years ago, so I saw what she went through. She was diagnosed in early March and by the end of June she passed away. I look at this situation, it is what it is. I could go around screaming & cussing, being angry all the time or be down in the dumps, crying all the time. I don't think that would be good for me, probably raise my blood pressure or worse. I'm just doing the best I can & there are days that I'm down & not having a good day. Yes, I did have genetic testing of my tumor. I think it came back with ATM something. I had another genetic test done recently to see if any of my cancer cells had mutated in a cancer that has targeted treatments, I have the KRASG12 mutation but there is only trial therapy. I also think the ATM didn't have anything targeted too. Just had my chemo of gemzar & abraxane, feeling a little tired but otherwise okay. I also have many people telling me they are praying for me. This really humbles me when I'm told this and I wonder if I'm worthy of all these prayers of healing. Sometimes I over think things. Take care.

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You are certainly worthy. Thanks for sharing your story and your feelings, I find both very helpful.

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@mayoconnectuser1

I appreciate the need to be thankful for excellent medical car - however, many folks seem more interested in thanking a god, than the incredible medical professionals.

Please reconsider where you place your thanks. I believe you should be profusely thanking these people.

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Sounds like you have had some bad experiences with "religion". Sometimes even those who identify as Christians make mistakes and act in interest of themselves. I am sad that you have not yet come to know Jesus as your Lord and savior. He is real. You would be amazed at what happens when you open your heart to him in sincerity. I have found His Word to be true over and over and over again. He still stands at the door and knocks. It is not His will that any should perish spiritually. I am not saying this lightly. Please please don't continue to turn away. He IS your answer. He IS life, peace, hope, love.

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I was initially diagnosed September 2021 and began chemo in November 2021. In October 2022 my PET showed no active cancer. My Ca19-9 had continued to drop throughout treatment. Until January 2023 my treatments were every 2 weeks, then to 3 weeks. Last month they stretched to every 4 weeks. PET scans have continued to show no activity snd Ca19-9 is 14. The lesions that were on my liver are gone and my lungs do not have any pinpoint activity. I still have neuropathy from the 10 rounds of oxaliplatin. I continue on leucovorin, campostar, and 5 fu. I feel well, I stopped dwelling on the fact that I was devastated by a cancer diagnosis after about 10 weeks and now it is a fact just like asthma and diabetes. I pray for those that provide me care and have so many that have prayed for my and the success of my treatment. The prayers have given me strength to continue the treatment, removed stress and worry, given me a peace, and enhanced the success of my medical treatment. While many do not believe in the power of God, I do. I have had those of different faiths and religions pray for me and I have learned to pray for others. I believe that healing our spirit is a big part of being able to live with cancer.

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@barbara333

I was initially diagnosed September 2021 and began chemo in November 2021. In October 2022 my PET showed no active cancer. My Ca19-9 had continued to drop throughout treatment. Until January 2023 my treatments were every 2 weeks, then to 3 weeks. Last month they stretched to every 4 weeks. PET scans have continued to show no activity snd Ca19-9 is 14. The lesions that were on my liver are gone and my lungs do not have any pinpoint activity. I still have neuropathy from the 10 rounds of oxaliplatin. I continue on leucovorin, campostar, and 5 fu. I feel well, I stopped dwelling on the fact that I was devastated by a cancer diagnosis after about 10 weeks and now it is a fact just like asthma and diabetes. I pray for those that provide me care and have so many that have prayed for my and the success of my treatment. The prayers have given me strength to continue the treatment, removed stress and worry, given me a peace, and enhanced the success of my medical treatment. While many do not believe in the power of God, I do. I have had those of different faiths and religions pray for me and I have learned to pray for others. I believe that healing our spirit is a big part of being able to live with cancer.

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I am so happy for the fantastic progress you are experiencing. May you continue to prosper.

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@ajh5285

I know about the feelings of not being worthy.
That's another topic I've been delving into online, since I have come to recognize what a potent influence those early impressions continue to exert throughout our lives.
I may be repeating myself, but when the idea occurred to me that even *I* am worthy of love, how shocking that idea seemed. And it's not as if I didn't already believe on an intellectual level that all of us embodied spirits are worthy of a simple, direct, uncomplicated love (dare I call it divine?).

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I struggled with feeling inadequate for a long time. I was always comparing myself to others and that's not good. I finally have learned to stop doing that! I know my house will never be spotless & my flowerbeds will always have weeds but that's okay. If it bothers someone alot they are welcome to clean or weed. I am who I am. I know you aren't very religious but I want to share what God's Grace means. God's grace is the undeserved & unconditional love that we don't have to do anything for. Yes, we all are loved, even when there are days, we don't feel loved. I hope you continue to find more uplifting reading to soothe your spirit and find peace. Take care.

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@barbara333

I was initially diagnosed September 2021 and began chemo in November 2021. In October 2022 my PET showed no active cancer. My Ca19-9 had continued to drop throughout treatment. Until January 2023 my treatments were every 2 weeks, then to 3 weeks. Last month they stretched to every 4 weeks. PET scans have continued to show no activity snd Ca19-9 is 14. The lesions that were on my liver are gone and my lungs do not have any pinpoint activity. I still have neuropathy from the 10 rounds of oxaliplatin. I continue on leucovorin, campostar, and 5 fu. I feel well, I stopped dwelling on the fact that I was devastated by a cancer diagnosis after about 10 weeks and now it is a fact just like asthma and diabetes. I pray for those that provide me care and have so many that have prayed for my and the success of my treatment. The prayers have given me strength to continue the treatment, removed stress and worry, given me a peace, and enhanced the success of my medical treatment. While many do not believe in the power of God, I do. I have had those of different faiths and religions pray for me and I have learned to pray for others. I believe that healing our spirit is a big part of being able to live with cancer.

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Where are you being treated Barbara? Your situation provides a lot of hope.

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@barbara333

I was initially diagnosed September 2021 and began chemo in November 2021. In October 2022 my PET showed no active cancer. My Ca19-9 had continued to drop throughout treatment. Until January 2023 my treatments were every 2 weeks, then to 3 weeks. Last month they stretched to every 4 weeks. PET scans have continued to show no activity snd Ca19-9 is 14. The lesions that were on my liver are gone and my lungs do not have any pinpoint activity. I still have neuropathy from the 10 rounds of oxaliplatin. I continue on leucovorin, campostar, and 5 fu. I feel well, I stopped dwelling on the fact that I was devastated by a cancer diagnosis after about 10 weeks and now it is a fact just like asthma and diabetes. I pray for those that provide me care and have so many that have prayed for my and the success of my treatment. The prayers have given me strength to continue the treatment, removed stress and worry, given me a peace, and enhanced the success of my medical treatment. While many do not believe in the power of God, I do. I have had those of different faiths and religions pray for me and I have learned to pray for others. I believe that healing our spirit is a big part of being able to live with cancer.

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Amen Barbara! This is a long journey and on days we could feel alone in it but we know He is always with us.
We cannot get stuck on statistics except to work to find better therapies and bring awareness to this Silent Killer.
I was NED and then recently an “escaped renegade” surfaced-and we are dealing with it! I learn a great deal from this forum and am thankful to reminded of the hope we all have. There are great physicians dedicated to this disease-seek them out. And remember that THE Great physician is always open to our call.

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@ajh5285
On my post chemo days, when I am the lowest, the thoughts enter my mind that I am no longer good for much. I don’t feel well enough to listen to a friend’s troubles, I can barely write notes of encouragement, cooking is out of the question(!) and watching TV makes me feel like a slug! But I remind myself that this too shall pass, and it does. We are not contagious; join a group, do easy volunteer activities, etc. you are valuable!!

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