3 weeks ago
Hi Cindi I know it's amazing. Immunotherapy is by infusion in the Oncology unit. Similar to how they do chemo - but less frequently and less time for me. I suppose the timings and frequency are different for everyone for everyone. And hope everything continues well for you. Alison
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3 weeks ago
1 Kudo
Hi Cindi Thank you so much for taking the time to reply. Your kindness has touched me. Sorry to hear that you have had to have various parts removed but sounds like you have dealt with that really well. I appreciate you sharing that. I have had the amazing news that I don't need surgery at the moment - the immunotherapy is really working for me. It's such a turnaround in my prognosis. So for the moment I'm focusing on staying as well as I can but still would love to hear of others' experiences. Thank you Cindi. 🙏 go well.
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a month ago
Hi I have always been healthy, ate well, positive approach to all that life throws at you etc but balaced with enjoying life too 😂 Diagnosed with bowel cancer stage 3, 8 months ago. Tumour removed 7 months ago. Been on chemo, which was awful for me. Cancer progressed to stage 4 and now in kidneys too. Chemo was stopped and I commenced on immunotherapy which seems to be working for me - more energy, no pain at tumour removal site, can participate in activities with joy and positivity. Although I am feeling good and am managing the side effects so far, I have aggressive mutant cancer cells and the possibility of radical surgery looms in front of me. It is likely to be the removal of several organs and I am not sure yet whether I will go ahead with the surgery. I don't want to live a half-life - dependent on others and my days filled with appointments and other stuff to monitor and support the impact of the organ removal. However, before I can make the right decision for me (and my family), I feel I need to find out from others who have been through surgery and removal of rest of bowel, sections of liver, kidney and maybe more. What is life like for you? How do you manage the complexity of this on a daily level, your emotions, independence, positivity etc. I have a feeling that if the oncologist says it's time for surgery, I want to have some understanding of what it might be like post surgery. Then, I can weigh up the impossible decision between a life filled with ongoing medical (and psychological) management and one that may be shorter. Who knows how the future progress of my cancer will unfold, but I would like to have as much information as I can, to help me have some kind of agency over how I want the remainder of my life to be. No crystal ball for any of us but I would like to live (and therefore die) with open eyes and clarity, and accepting what comes with the choices I make. I want to live longer but I want to be prepared as best as i can manage - for what comes. If you are willing share your journey of multiple organ removal in the bowel area and how you coped with this, I would be deeply grateful 🙏
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a month ago
Hi Jonoville I just purchased F*ck I'm Dead, now what? From ebay. It has all the things you mentioned and much more. It is proving really helpful for me as it has prompted me to include things I hadn't previously considered. You can also get it it downloadable pdf format but I prefer the physical version. And I love the title 😂 Humour keeps me positive.
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a month ago
1 Kudo
Hi AmyCate I had chemo previously for bowel cancer but not with immunotherapy. So I'm not able to share my experience of the combined therapies and i have a different cancer. However, the chemo made me feel absolutely awful - I couldn't really do anything. I was so exhausted and in pain (at tumour removal site). The cancer returned and am now off chemo and receiving immunotherapy- which seems to be really working for me. I have energy, feel good and am more positive about how I can manage my cancer. Hope this helps in a small way.
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