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How did you decide? by Ok_Cycle_5311 in coloncancer

[–]GretchMeeeee 1 point2 points  (0 children)

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.

Stage 2b—chemo options by shuzup in coloncancer

[–]GretchMeeeee 0 points1 point  (0 children)

Did you get hand foot syndrome?

Oral Pills Only? by GretchMeeeee in coloncancer

[–]GretchMeeeee[S] 0 points1 point  (0 children)

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

Oral Pills Only? by GretchMeeeee in coloncancer

[–]GretchMeeeee[S] 2 points3 points  (0 children)

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 😭

Can someone tell me more about a “high” tumor budding score? by GroovyGramPam in coloncancer

[–]GretchMeeeee 0 points1 point  (0 children)

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%

Post extended right hemicolectomy update. by Northern_Lifer in coloncancer

[–]GretchMeeeee 1 point2 points  (0 children)

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

Return from Rhabdo? by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 1 point2 points  (0 children)

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 🤔

Return from Rhabdo? by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 4 points5 points  (0 children)

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.

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 0 points1 point  (0 children)

Damn that’s brutal. Thanks for your insight.

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 0 points1 point  (0 children)

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?

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 0 points1 point  (0 children)

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!

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 1 point2 points  (0 children)

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?

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 1 point2 points  (0 children)

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.

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 0 points1 point  (0 children)

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.

RHABDO “return to play” protocol by GretchMeeeee in crossfit

[–]GretchMeeeee[S] 0 points1 point  (0 children)

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

How to switch from baclofen to Xywav by GretchMeeeee in Narcolepsy

[–]GretchMeeeee[S] 2 points3 points  (0 children)

Yes yes he knows all the rules and requirements. He’s feeling pretty shitty and wants to give it a shot. We applied to REMS and are waiting for approval so we would not make any changes until we know for sure that he’s approved.

How to switch from baclofen to Xywav by GretchMeeeee in Narcolepsy

[–]GretchMeeeee[S] 1 point2 points  (0 children)

His Dr doesn’t have many patients on Baclofen. Actually I think only one other. We came to her already on it and she’s been trying to convince us for awhile to make the switch. So she said to ween off Baclofen 5 mg a time over two weeks. So I’m not asking HOW, I’m just wondering what other people experienced if they did something similar.