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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Just passed the 14 month with stage 4 inoperable pancreatic cancer. I have had 35 treatments with Abraxane & Gemczar. (2 weeks on and 1 week off). I thank God every morning & every night I am still alive. I eat well and try to keep doing things that I did before. Somedays it is really difficult, but each day is a challenge to keep a positive attitude & the only thing I have asked of others who want to help is for prayers. Keeping as little stress in your life will help immensely, but there will always be some stress. I will keep you in my prayers that you will be in more "congenial circumstances in 2 weeks".

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Thank you. I do thank "Creation" every morning and evening for giving me another dawn &/or dusk along with the OPPO [opportunity] to be of good heart and good deeds.
Eating well is turning out to be a major obstacle for me; just when we think we have a plan that is acceptable to my body, something seems to change, and it becomes a step-backward. A diet diary has been helping to identify potential triggers. For instance, I love kiwifruit, but come to discover that it acts as a laxative; so I have regretfully consigned it to the no-no list.
I have asked several other friends and family to pray for me, and I believe they are doing so. I have actually started praying again (lapsed Catholic here, with many problems accepting the mainstream faith).

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P S - My oncologist believes we have reached the end of what standard Chemotherapy can achieve, (after one nearly complete course of g-a failed to have any discernible impact on the tumor) and is now considering me palliative care (in other words, addressing quality of life issues rather than switching to an alternative Chemotherapy regimen.

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I found out I had mucinous pancreatic cancer in October 2022. Fortunately, my cancer was found early. I have a tumor in the tail & 2 lesions on my liver. I was told it is stage IV because it's on the liver & 2 years prior I had surgery to remove a 4 pound ovarian cyst that had cancer cells in it & both ovaries had cancer. I can't have surgery to remove the pancreas because the cancer cells have already been spreading around. I have had chemo since October. I was told there aren't alot of treatment options for this type of cancer. I had been working only 2 mornings a week during my treatments but in April I deceided to retire. I'm feeling good & want to do what I want as long as I can. I realized, we don't know what the future holds. I have been feeling positive most of the time but it is frustrating when your body is just tired out. I'm learning to listen to my body & take naps. I can appreciate the feeling of helplessness & having no control because we can't eat, drink, exercise or anything that will absolutely help cure this. I was told my cancer isn't curable, but could be managed. I have met many people that have had chemo & then they were done & cured. I was feeling frustrated because so many were cured & I won't be. The chemo room is my home away from home & the staff is wonderful! I get a reality check that I don't have it that bad, I see someone else have it worse than me. I find a lot of comfort from praying & seeing how God made circumstances that were beneficial for me. I'm reading books, baking, going through stuff & doing a lot of craft projects now that I have put off for years & it keeps my mind off the cancer. It sounds like I'm overdoing it but I don't know how long my eyes, hands & brain will allow me to keep doing all this. I'm living my life as if I didn't have cancer by doing things I've put off because I will do it later or I couldn't take off of work. Last month my family & I went to Germanfest. We went to a Milwaukee Brewers game last night. Next month we hope to take an Upper Dells ride & go to an Indian Powwow. I'm trying to live each day to the fullest, which sounds cliche but I should have been doing it sooner. Stress is hard on the body, try to do or find something that relaxes you. I saw a video of a song, "It's OK" written & sung by the performer, Nightbyrd on a TV talent show. It's sad but it's very moving & we can relate. Take care.

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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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@ajh5285

Thank you. I do thank "Creation" every morning and evening for giving me another dawn &/or dusk along with the OPPO [opportunity] to be of good heart and good deeds.
Eating well is turning out to be a major obstacle for me; just when we think we have a plan that is acceptable to my body, something seems to change, and it becomes a step-backward. A diet diary has been helping to identify potential triggers. For instance, I love kiwifruit, but come to discover that it acts as a laxative; so I have regretfully consigned it to the no-no list.
I have asked several other friends and family to pray for me, and I believe they are doing so. I have actually started praying again (lapsed Catholic here, with many problems accepting the mainstream faith).

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I have PC too. Also a Catholic. My faith has given me the strength to take each day as it comes. It’s that personal relationship I have with Him that is so important to me. Good luck with your daily struggles.

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What about Folfirinox? Or proton therapy on liver lesions? Or some of the immunotherapy pills/chemo drugs being used? Xeloda?

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My oncologist considered Folfirinox; his professional opinion was that switching Chemo regimens since g-a had no discernible effect in reducing the size of the tumor, would not provide any additional benefit. He actually had his research assistant come to sign me up for an immunotherapy trial he is participating in. It is, however, limited to people with HLA-A2 (one of the most common genes). My commonest is, however, HLA-A3, so he lost his bet that I would qualify.
Xeloda has not been mentioned. I am due for a follow-up scan tomorrow, and another consultation with him on Tuesday. I'll do a little online research today (retired physician here, so not intimidated by reading the medical literature) and see if I wind up with more questions for my list!

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I've asked about radiation, and didn't get a clear answer as to whether or not proton therapy is available at the (university) institution where I'm receiving treatment; they are planning to install a new machine in 2024, one that delivers targeted therapy in an upright position.
I can add a question as to whether or not proton therapy to the liver would help. I have been seen by a radiation oncologist. He looked at my scans and did a cursory belly exam after which he was less "happy" about the idea of delivering some targeted radiation, unless I develop a lot more pain associated with the area that was most painful on palpation.

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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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I thank the medical professionals and thank God for them too! I, too am a Catholic but have not been going to church since my diagnosis. I found a better Mass online so I do not have to be exposed to those who go no matter how they feel.
Seems like you are against faith in a God which is sad. Let us believe in our higher powers and we can thank them for the medical professionals too.

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