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Just diagnosed: Surgery not an option, looking for hope
Went in for my first colonoscopy in December, F age 58. Had negative Cologuards for the last 4 or 5 years. My PCP gave me a FIT test in September which came back positive. Colonoscopy revealed a rectal mass (close to the sigmoid colon junction) she said was typical cancer presentation. Had some abdominal pain and went to ER. PET scan found mets to liver and both lungs, stage IV. Colorectal surgeon told me that surgery, "would not benefit me." Oncologist gave me 2 to 3 years prognosis, said treatment would be palliative and not curative, and surgery, "would never be an option." Started FOLFOX + Mvasi in January; just finished my 2nd round. CEA was initially 58, and is now 46, so that is good news I think. Don't really have a question, just looking for some hope from the stories of other people.
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@colleenyoung thanks, Colleen. They are currently doing a plan with Lonsurf and they will add avastin. I think I just need to stay hopeful that there will be a time that they can surgically remove the tumor and I'm going for a pet scan next week and I'm hoping that it hasn't spread further than my lung. My original diagnosis I had a tumor in my: between my small and large intestine. It had spread to my left lung but they were able to surgically remove the tumor. The tumor is in my left lung again and there are two smaller nodules. So I asked for a pet scan to make sure it hadn't spread because my signatera cancer blood test was a 12.8 and it has always been a zero. I have a positive attitude and an optimistic Outlook.
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2 Reactions@vcsongradi just seeing this. Sorry to hear surgery not option. Neuropathy is miserable. I am going in for debulking surgery on the 21st of January. Hoping for good results. I’m sending a hug. No words. 🙏😔
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1 Reaction@branckerd I had a consultation yesterday and she recommended Xeloda (for 14 days, off 7) with Mvasi every third week for 30 minutes instead of infusions every 2 weeks and chemo ball for 46 hours. What was your experience with Xeloda? Side effects, etc.? What happened at one year, did your cancer return?
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1 Reaction@amybethowen Hi, Amy. Gosh there are so many of us in this same boat. I'm still considered stable, still getting infusions every 2 weeks with chemo ball for 46 hours, and the only side effect is neuropathy (worse in both feet, much better in my hands). How are you feeling? Tell me what's happening with you.
@dnfjc Wishing you fantastic results from your debulking surgery!
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2 Reactions@vcsongradi the only things I had was diarrhea and dry feet and fingertips Took anti diarrhea over counter to control bowel no problem It’s been a year and 2 months I took with good results but now my nodules grew alittle so they are changing cause they believe it isn’t working so well now only a slight growth though Hope everything works well for u
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3 Reactions@vcsongradi
I have no feeling in my fingertips. My feet are pretty much numb. I drop things often. I'm starting Lonsurf next week. I'm also getting a PET scan because I fear it has spread to more areas. Mostly my head and neck because they hurt so much. I'm on disability now and I am tired often. I have been starting to exercise and do stretches.
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2 Reactions@vcsongradi what is your infusion and ball Where do u go for treatment
@branckerd Right now my maintenance chemo is every 2 weeks. I have Mvasi for 30 minutes, then Leucovorin for 1 hour, then 5-FU in the chemo ball for 46 hours. I go to an infusion center through the local hospital for all of this in Newburgh, Indiana. I see the oncologist every 4 weeks (just so I don't have to have so many appointments). Saw him yesterday, and he is confident that the cancer will remain stable for a while longer. He said there is effective second line chemo for when the cancer begins growing again. I get a repeat CT around March to see where everything is currently. CEA from yesterday was 3.2.
@amybethowen Hi, Amy. What did the PET scan show? I have heard that Lonsurf often has positive results. Stretching and exercising are both good things to start! Maybe that will help with your fatigue. Keep posting about how you are doing.