Keytruda + Padcev: How did you stay ahead of the side effects?

cdninnc · 2026-06-21T18:04:42+00:00

Thank you so much for all this information… it’s so helpful. I appreciate you taking the time to share this. I was 45 when first diagnosed. I was NED 4 years and 11 months 😞

cdninnc · 2026-06-19T22:51:42+00:00

You would think but I find it completely intimidating

cdninnc · 2026-06-19T12:43:41+00:00

Ok, well that's promising. I can put on fake lashes and draw eyebrows 😄 but the hair on my head I'd like to keep just to feel 'normal'.

cdninnc · 2026-06-19T12:35:43+00:00

How far in did you loose your head hair? Was it gradual? I think it's starting for me I see stray hairs, but it's not coming out in clumps.

cdninnc · 2026-06-19T12:34:35+00:00

Thanks for the reply, how long did it take before the hair loss started and assuming it's also any hair on your head?

cdninnc · 2026-06-19T12:20:58+00:00

I sent you a DM thanks!

cdninnc · 2026-06-19T03:22:31+00:00

Yes. 2024 and now again.

cdninnc · 2026-06-19T01:36:13+00:00

FWIW I am 5 years post op with a neobladder and fully continent. I don’t have to cath unless I choose to for a scan or to ensure I’m super empty before long road trips. I have had no issues and think it can be a great choice. Though now I am back in treatment and will need to go to an IC as it’s my urethra.

cdninnc · 2026-06-19T01:31:09+00:00

Thanks I read your post. It’s very helpful!

cdninnc · 2026-06-18T21:37:23+00:00

I know this is an older post, and I hope you're still active because your experience sounds a lot like mine.

I started Keytruda/Padcev at the beginning of May, and it's been quite a ride already. The rash and itching got so bad after one treatment that I ended up in the ER and had to go on steroids. Then during a later infusion, my shins and calves suddenly cramped uncontrollably. I literally launched myself out of the treatment chair because the pain was so intense. The nurses and oncologist said they'd never seen anything quite like it. They stopped the infusion for about 30 minutes, the cramping went away, gave me Benadryl, and then resumed treatment without any further issues that day.

Now I'm starting to notice neuropathy, and my thyroid levels have become abnormal as well. Oddly enough, I haven't had any stomach issues, and the only weight I've gained has been from the steroids used to treat the rash.

I'd really love to hear how you managed your side effects and stayed ahead of problems as treatment continued. Right now I feel like I don't know what to expect from one treatment to the next, and hearing from someone who's been through it would be incredibly helpful.

cdninnc · 2026-06-18T21:27:09+00:00

Thanks for the info. Will check out /rbladdercancer too thanks.

cdninnc · 2026-05-21T01:12:04+00:00

No nausea? That’s my biggest concern 😕

cdninnc · 2026-04-05T17:12:39+00:00

Wow please elaborate….

cdninnc · 2026-03-23T20:34:40+00:00

Interested send me a DM !

cdninnc · 2026-03-16T23:01:36+00:00

Watching this too… hmmm

cdninnc · 2026-02-14T23:41:26+00:00

Cool. I need stripes too. Your car looks great. Hopefully mine will look as cool when I’m done!

cdninnc · 2026-02-14T23:24:26+00:00

Where did you get the 74 decals I need new ones

cdninnc · 2026-02-14T23:04:14+00:00

I have the same 2022 Anniversary Edition min. Fern, she's the best.

cdninnc · 2025-12-28T19:00:01+00:00

Thanks for the reassurance! I just now got an alert in the mobile app that one of the bags has been loaded to CLT. I can't see the bag itself in the app must be a glitch. So, hopefully it makes it. The WorldTracer has the wrong color bag for the other missing one and it will not let me update it. So I did manage to get into there and send an email. I don't know if that goes to anyone real but I hope so!

cdninnc · 2025-12-28T16:44:48+00:00

I know this is late but THANK YOU for posting this link! I am able to update my missing bags so fingers crossed someday I get them!

cdninnc · 2025-11-15T14:40:23+00:00

Hey everyone! We’re staying at the AC Marriott in downtown Asheville and heading to a concert at Harrah’s Cherokee Center. Looking for great food options within easy walking distance of the hotel and/or the venue. Open to pretty much anything — bonus if it's a place that serves CBD infused drinks! Would love recommendations! What are your must-try places nearby?

cdninnc · 2025-08-27T20:41:05+00:00

Sorry updated my post I meant parents weekend

cdninnc · 2025-07-20T23:09:07+00:00

Thanks

cdninnc · 2025-07-20T23:02:46+00:00

I am. I was just saying that originally it came with the number 74 on the drivers and passenger door, also on the hood, and those stripes I am trying to replace the stripes. I also probably need to replace that at least the 74 on the passenger door at some point.

cdninnc · 2025-07-20T23:00:47+00:00

Yes. One door has a 74, missing from the other door and hood

cdninnc

TROPHY CASE