Living with stage IV CRC

jamyers97
jamyers97 Member Posts: 7 Member
in Colorectal Cancer #1

Very interested in hearing from those who are living with stage 4 CRC as a "chronic condition". My wife is currently in this situation - receiving FOLFOX and Avastin on an ongoing basis, tweaking the Oxaliplatin concentration and sometimes backing it of entirely when the side effects become too severe. She is currently NED on CT scan, but CTDNA numbers are trending up.

She is currently on "chemo holiday" until after her next CT Scan in early March. If something pops on the scan, we will resume treatment, but if still NED, we are very much conflicted on where to go from there.

Again, wondering about experiences of others in this situation. Do you keep pushing chemo prophylactically or do you hold off on chemo until something actually shows up on a scan? It is frightening to think about stopping treatment altogether, but I just don't know if she can continue to get chemo every 2 weeks.

Thank you.

Comments

  • Steelkiwi686
    Steelkiwi686 Member Posts: 78 Member
    #2

    I unexpectedly had what started as a two month chemo break which I desperately needed to regain strength. I had every side effect under the sun and yes oxaliplatin was brutal but I believe it saved my life. Your wife sounds as if she is in a similar situation.
    I was to be on chemo for life and yes it was treated as chronic similar to what you describe. I had chemo for a year.
    I was really scared to take that two months off chemo but dr was confident there was little downside. I was also starting to wonder how long I could keep having the every two weeks treatment.
    Anyway, I went back after two months and all scans and bloodwork was good so dr recommended we stay the course (no chemo) and retest in another 3 months. He felt it was a safe choice. We proceeded from there. Three month intervals from there then eventually six month intervals knowing all along that if there was anything at all concerning in blood or scans then chemo would resume. Meanwhile I was building strength to endure more chemo which I 100% believed would resume at some point.
    I followed my oncologist’s advice at every visit as to if extending the break was warranted. I trusted him.

    lo and behold I never needed chemo again.

    I actually had a visit today (5 1/2yrs after that first two month break) and it was explained I had a complete clinical response to the chemo.
    I am not due back again for ct scan and bloodwork for a year. I am beside myself.

    Try to enjoy the break. Make the most of it. Congratulations!

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