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Aggressive appendix cancer and right hemicolectomy: Chemo worth it?

Posted by dnfjc @dnfjc, Jan 27 2:54pm

Trying to decide if chemo is worth it. Xeloda or fluorourcil are my choices. no cancer in lymph nodes and margins clean. Chemo offered because appendix had a perforation with mucosa 0.5cm which put me at stage 2 and chance of rogue cells not seen. I am scared of what quality of life I would have during and after treatment if I get it. My 5 yr survival rate is 50-50. Add 10% with chemo. Anyone with this situation or thoughts?

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isadora2021 | @isadora2021 | Jan 31 5:19pm
In reply to @dnfjc "When I went in to oncologist first time she told me to call in a week..." + (show)
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When I went in to oncologist first time she told me to call in a week with decision chemo or no. It was the holidays so I waited until yesterday to go in. Dr told me the option wasn’t there any longer because if there are bad cells they will already be out. Too late for chemo. She also said if did chemo it was very iffy if it would help or not. Like 5%. So my hard decision was made for me and I am relieved. No chemo. Bloodwork good and ctscan in February. That will ease my mind. Dr felt it was the right way to go and because no cancer present after Colectomy and 20 lymph nodes all clear
and markers all clean. Thanks for asking. How long have you been NED?

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@dnjc All tfw bat with your upcoming scans to put your mind at rest. My oncologist called it NED after my HIPEC, cytoreductive surgery and peritonectomy in 2022 so coming up for 3 years in May.

I apparently have a 70% chance of being NED for 5 years.

I chose not to do maintenance chemo and have been lucky that was the right choice for me. My oncologist says there’s no need to go back on now I’m still NED, and it’s wait and see.

My oncologist and I will leap back into the fight when we need to . Hopefully that’s not for many years 🙏😊🌺

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peacepants | @peacepants | Nov 4 12:39pm
In reply to @isadora2021 "@dnfjc I was diagnosed with stage 4 appendix cancer in 2021 so I’m not in the..." + (show)
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@dnfjc I was diagnosed with stage 4 appendix cancer in 2021 so I’m not in the same situation as you are. I had initial debulking surgery followed by 6 months of Folfiri and Avastin.

I don’t get to communicate that often with other appendix cancer patients as there are not that many of us. That rarity has made treatment more difficult.

I’ve been NED since HIPEC in mid 2022.

From a low chance of making 2 years I have a 70% chance of making 5 years.

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@isadora2021
Hi- I was diagnosed with stage 4 appendix cancer (signet ring) in January 2024. After debulking, I had 10 rounds of chemo that were the worst and knowing now, that there isn’t any empirical data that shows chemo can be a beneficial treatment for appendix cancer, I could kick myself but my doctor said that’s all they had to offer with so little known about the cancer.

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isadora2021 | @isadora2021 | Nov 4 3:39pm
In reply to @peacepants "@isadora2021 Hi- I was diagnosed with stage 4 appendix cancer (signet ring) in January 2024. After..." + (show)
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@isadora2021
Hi- I was diagnosed with stage 4 appendix cancer (signet ring) in January 2024. After debulking, I had 10 rounds of chemo that were the worst and knowing now, that there isn’t any empirical data that shows chemo can be a beneficial treatment for appendix cancer, I could kick myself but my doctor said that’s all they had to offer with so little known about the cancer.

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@peacepants

My understanding from my senior oncologist and my HIPEC and cytoreductive surgeon is that - under clinical trials and with world wide collated patient evidence (being a rare cancer it was a no brainer for me to sign permission for all my cancer tumour and treatment medical data to be shared with major cancer research hospitals globally) - my type of stage 4 appendix cancer (adenocarcinoma) could be effectively treated with chemo the same way as colon cancer.

Personally I credit Folfiri and Avastin for giving me heaps more time than my initial prognosis indicated by getting me to a stage where I qualified for HIPEC and cytoreductive surgery. That has been my game changer. I have been so fortunate to have been NED for 3+ years now. I was able to stay away from oxyplatin.

Treatment was very tough at times but became normal and doable (great team helping me get on top of my side effects). I am so lucky to be back to an excellent form all things considered. I know mine isn’t curable and treatment is palliative.

It’s tough how treatment affects us all so differently. My initial prognosis was awful but surgeries, chemo and immunotherapy worked for my type of stage 4 appendix cancer .

So difficult for us all 🌺🙏

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isadora2021 | @isadora2021 | Nov 4 7:27pm
In reply to @peacepants "@isadora2021 Hi- I was diagnosed with stage 4 appendix cancer (signet ring) in January 2024. After..." + (show)
Profile picture for peacepants @peacepants

@isadora2021
Hi- I was diagnosed with stage 4 appendix cancer (signet ring) in January 2024. After debulking, I had 10 rounds of chemo that were the worst and knowing now, that there isn’t any empirical data that shows chemo can be a beneficial treatment for appendix cancer, I could kick myself but my doctor said that’s all they had to offer with so little known about the cancer.

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@peacepants I’ve been reading up on your form of appendix cancer. It’s very rare, even for a rare type of cancer. I understand your oncologist’s comments better now as well as your own reservations around chemo (which together with surgery seem to be the only options available at present for signet ring appendix cancer).

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