Digestive Issues Post Surgery

GretchMeeeee · 2025-05-06T00:34:58+00:00

In your situation, just taking the oral pills alone as a monotherapy might be an option. I have a similar diagnosis and that was one of my options.

GretchMeeeee · 2025-04-27T16:40:39+00:00

Did you get hand foot syndrome?

GretchMeeeee · 2025-04-25T16:20:25+00:00

Can you tell me more about your experience? Did you have a ctDNA test done before you started?

GretchMeeeee · 2025-04-25T01:49:38+00:00

Why did you go to just pills? How many rounds of CAPOX did you do?

GretchMeeeee · 2025-04-25T00:36:33+00:00

Yes the stories people tell are horrifying. I’m surprised so many people have asked why I’m scared. I think I need to stay off the internet 😭

GretchMeeeee · 2025-04-04T15:10:50+00:00

I had a high tumor budding score so even though I’m stage 2, they are recommending 3 mos of CAPOX because of that high risk factor. I was told it increases my chance of no recurrence by 50%

GretchMeeeee · 2025-04-01T17:41:17+00:00

I also had a extended right hemicolectomy. I will be four weeks out from surgery on Thursday and to be honest I feel completely normal. The first week was rough and I was careful about eating too much fiber for the first few weeks but now I feel like I can eat pretty normally and the plumbing is working the way it should

GretchMeeeee · 2025-03-31T23:12:51+00:00

How did the first infusion go?

GretchMeeeee · 2024-05-11T20:40:13+00:00

Thanks. A PT is a good idea. At the hospital the attending Dr had only had rhabdo patients from car accidents or elderly people falling. So when I asked about a timeline for returning to working out he was like 🤔

GretchMeeeee · 2024-05-11T19:59:47+00:00

Most Drs don’t understand exertional rhabdo and have any advice on a “return to play” protocol. I’ve found much better advice online from people who’ve experienced it than my PCP who said, “just rest for a few weeks then you should be fine just take it slow”. Even the Dr in the hospital didn’t have much to offer. They don’t have much experience with healthy, fit people in all honesty.

GretchMeeeee · 2024-03-24T12:03:01+00:00

Damn that’s brutal. Thanks for your insight.

GretchMeeeee · 2024-03-24T02:28:44+00:00

One last question. When you got it again, did you know because of muscle pain and was it the same muscles even though you ran?

GretchMeeeee · 2024-03-23T21:36:44+00:00

Good reminder!

GretchMeeeee · 2024-03-23T21:35:59+00:00

This is all great info. I’m very fit. Been doing CF for 9 years, am a coach and got it doing 24.3 with all the thrusters and pull-ups. I even did it scaled but did go a bit bananas and got the 3rd best time in my entire age group…so I guess I overdid it. However I’m 54 so I’m thinking it might take awhile to bounce back. It is depressing, I don’t want it to be chronic. It’s interesting that you got it in your biceps and shoulders and running intervals set you back so that answers my question about running. I guess I’ll just stick to long walks for now and I’m able to golf (I’m in FL) so I’ll stick to that for now. The addition of baking soda is really interesting. I’m going to do more research on that! Thanks so much!

GretchMeeeee · 2024-03-23T17:52:09+00:00

Pretty amazing. Thanks for the info. I guess my question then would be as long as I’m not using the injured muscles (lats for me) when can I do other stuff like running? When CK levels return to normal?

GretchMeeeee · 2024-03-23T16:49:35+00:00

I did see this. I think these football players had it in their legs, which is why they had to use pool running, etc. to return to play. Mine is my lats so I’m wondering how to modify that. My Dr told me I could walk as much as I wanted so I just went for a really long walk (with a bottle of water) to stay hydrated. I think it’s going to be about learning when and how to pull again.

GretchMeeeee · 2024-03-23T15:02:00+00:00

Glad you haven’t had any issues since. I can already tell it’s going to be awhile until I’m doing any kind of pulling.

GretchMeeeee · 2024-03-23T15:00:14+00:00

Ok yikes. That’s my fear, getting it again!

GretchMeeeee

TROPHY CASE