NED for 2, years but no maintenance treatment. Mistake?

Posted by isadora2021 @isadora2021, Jul 1 4:28am

I was diagnosed with stage 4 appendix cancer in 2021, filleted like a fish for debulking surgery, 6 months fortnightly Folfiri and Avastin, HIPEC with CRS + peritonectomy. 2 years NED since HIPEC.

I was told my cancer could not be cured and just pummelled back into remission if possible if it recurred. I chose not to have maintenance chemo after HIPEC as I’d successfully completed my 6 months. I am now surveillance screened (PET-CT + bloods) quarterly.

Has anyone chosen to continue chemo after HIPEC or to stop as I did? I’m second guessing myself here

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tgoz | @tgoz | Jul 1 9:15am

Could you please describe your HIPEC CRS experience? I have peritoneal mets from colon cancer and I will be starting a PIPAC clinical trial soon with the hope I will become eligible for CRS and HIPEC.
From what I can tell PIPAC is a decent much less invasive procedure to battle peritoneal cancer. Does anyone else have experience with these treatments?
Thanks
Tim

isadora2021 | @isadora2021 | Jul 1 9:58am

Hi Tim

HIPEC is called the “mother of all surgeries” for a good reason. It is massive invasive surgery - but took my 2 year (yes 2 year!) average statistical survival prospects from 14% to a 5 year prospect of 75%. A no brainer, having qualified.

I have a huge scar from my pubic bone up to inbetween my breasts. A massive cut to open me right up to have a good look and to remove any tissue and body parts that didn’t look healthy or potentially at risk plus remove all my peritoneum. Then 3 hours of hot chemo being swilled around in my abdomen.

The whole surgery and hot chemo process took 12 hours. It may be less or more depending on what needs to be cut out.

I had an epidural in the theatre before being put under for surgery.

I was in ICU for about 5 days on heavy duty pain killers and nourished by IV. The pain management team was awesome.

I was sitting up in a chair next to my bed for an hour (getting up with great difficulty and pain first time) the same day I woke up in ICU and they had me shuffling around with my IV pole the next day, under pain meds, and soon walking at least once a day thereafter!! Movement really helped the healing process.

I was on the general ward for about 5 days so about 9 days in total after surgery.

I didn’t have any surgery complications, no stoma bag needed and my surgical wound was treated by home care twice a week for about a month until it was fully healed.

I would do it again, and might need to if I get a recurrence and qualify.

I hope that helps! Don’t hesitate to ask any other questions.

Good luck.

Best regards
Isadora