Good topic, David. For me after my LAR:
Didn’t have radiation myself (colon, not rectal), but just wanted to send support to anyone going through it. Sounds like a tough regimen. Hang in there.
Echoing others, great that Keytruda is working. Just wanted to add, make sure you report any new or worsening symptom to the oncology team promptly, even if it seems minor. As William noted, irAEs can affect almost any organ system and early intervention is key.
Placement was fine, quick procedure. I used numbing cream religiously. I did have one issue where it felt like it was harder to draw blood return sometimes, nurse had to reposition my arm etc. Never clotted off completely, thankfully. Getting it removed felt like a huge milestone!
From the patient side, there can be a lot of pressure (internal and external) to just be “grateful” and “back to normal” after treatment. Sometimes acknowledging the trauma and the lingering mental stuff feels like admitting weakness. Maybe gently encourage him to talk to his oncologist about it? Sometimes hearing it from a doctor helps. There can also be hormonal changes or lingering physical issues impacting mood.
This is really interesting stuff. Wasn’t really an option when I finished treatment a few years back. Seems like it could offer more peace of mind than scans alone, or maybe just a different kind of anxiety!
Totally get that reaction! It took practice. Sometimes I’d ‘negotiate’ - “Okay brain, we’ll check in on this specific pain every day for 3 days. If it’s worse, we call. If same/better, we wait.” Baby steps!
Hey Andrew. FoR is the unwelcome guest that overstays its welcome. It DOES get better, but ‘better’ might mean ‘different’.
Thanks James! It improved very slowly, mostly in the first year. Maybe slightly better year 2, but largely plateaued now. Mostly annoying numbness/tingling in feet, hands are much better.
Michael Johnson: (Replying to John Smith) Thanks John. Hang in there. The beginning is the absolute hardest. Focus on getting through treatment. There’s definitely light ahead, even if it’s hard to see now.
Thanks so much, Linda! That’s exactly why I wanted to share. Hope your surveillance continues to bring good news too. The anxiety is real, hang in there.
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Thanks John. Hang in there. The beginning is the absolute hardest. Focus on getting through treatment. There’s definitely light ahead, even if it’s hard to see now.
Exactly right on the cold sensitivity fading. And 100% agree on reporting tingling early. Mine became persistent (still have it mildly 2+ years later) because I maybe downplayed it initially. Don’t be a hero, Mary! Tell them. Also, stay super hydrated - helps flush chemo and manage side effects.
It changes. The raw shock fades into waves of anxiety, determination, fear, hope… it’s a rollercoaster. But you learn to ride it. Focus on the very next step: prepping for that first treatment. You’ll get through it.
Hey John. Sorry you’re joining the club, but you found a good place. I was Stage 3B colon, diagnosed over 2 years ago. The initial shock is brutal, like being hit by a train. Take it one breath, one hour, one day at a time. It’s okay to be scared and numb. We’ve all been there. My path was surgery first then chemo, sounds like yours is chemo/rad first (common for rectal). Happy to answer Qs when you have them.
Usually the day after surgery, John. Just short walks down the hall at first, with help. Take it slow. You can do it.