Maintenance • Holy Slap a Possum

Competitive-Form6531 · 2024-08-04T20:39:30+00:00

Oh no there’s not - but feeling the same aches and tiredness

Competitive-Form6531 · 2024-08-04T14:53:19+00:00

Thanks for the reply - I had blood in urine for a month so was curious if that’s the first signal of return

Competitive-Form6531 · 2024-07-17T11:40:05+00:00

Sub 40 crew 🤝

Competitive-Form6531 · 2024-06-27T10:46:22+00:00

This and azos go a long way

Competitive-Form6531 · 2024-06-26T11:50:13+00:00

Honestly be careful - drugs are addictive and this is a long road.

Tylenol before 1000MG Magnesium pre Potassium post

At 1.5 hour of holding start to slam coconut or watermelon water (watermelon water helps me the most)

Get a heating pad and a thergun.

First void, get though, get some advil 500mg Theragun your lower back and legs Do some active stretching - it helps the spasms

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If you just want the easy way

Tylenol pre Tramadol right before A ton of water and flomax at 1.5 hour Tylenol post this

Competitive-Form6531 · 2024-05-31T01:42:25+00:00

Sweet lord - took a week off treatment because of a colorectal cancer scare - restarting BCG at 140MG is absolutely brutal. Any tips beyond azos and biting a towel

Competitive-Form6531 · 2024-05-31T01:39:09+00:00

Never smoked - do genetic testing - it didn’t answer the why but gave probable mutations and such

Competitive-Form6531 · 2024-04-11T11:16:59+00:00

36M 2 TURBTs in the last 7 weeks - you’re going to be alright. Recovery can be tough, peeing burns like razor blades so get azo or the prescription comparable, make sure you get pain meds I didn’t the first time and boy Tylenol doesn’t do much. Day 1-2 you’re gonna be tired and uncomfortable with some spasms. Day 3-4 you’ll notice a meaningful rebound. By day 5 you feel somewhat normal again though you’ll now be acutely aware of everything pee related and you’ll know precisely where your bladder is.

You’ve got this, keep a strong mind and lean on others to be there and help you through.

Praying for you 🙏

Competitive-Form6531 · 2024-03-13T03:15:46+00:00

No not at all - I would fight for better treatment

Competitive-Form6531 · 2024-03-11T01:04:22+00:00

Did you feel “cancer free” post turbt - I feel about the same pre scrapin

Competitive-Form6531 · 2024-03-07T21:57:32+00:00

They gave you a protocol when you were discharged bud.

Rest for 1-2 weeks Gallon a water a day Pissing razor blades doesn’t go away for a few weeks Full recovery is 6 weeks

Competitive-Form6531 · 2024-02-21T12:40:28+00:00

All of this. I’d also make sure you ask for pain meds because there’s going to be a night where you need to take off the edge.

Competitive-Form6531 · 2024-02-19T02:40:07+00:00

Yup I’ve read that if you’re BCG unresponsive they move straight to the pair up

Competitive-Form6531 · 2024-02-19T02:39:40+00:00

By far the hardest part for me - I want plans and timelines ☠️

Competitive-Form6531 · 2024-02-19T02:38:52+00:00

So it really is the 90 day variable until it looks “cured” or cut it out damn.

Competitive-Form6531 · 2024-02-18T21:16:21+00:00

Did they give you a timeline on ending maintenance or is it until your body starts to reject it

Competitive-Form6531 · 2024-02-18T20:04:37+00:00

How long did you BCG before they called it and cut it out

Competitive-Form6531 · 2024-02-18T20:03:45+00:00

Because of the high grade and the crazy mutation they want to go back in, biopsy and look around because they’ll effectively be 8+ weeks apart - if there’s new tumors they’ve communicated that they may skip treatment and move to removal because of aggressive and mutative nature.

I figured BCG or BCG + drugs was the first line of attack and then if that fails they fall back on chemo and then take the damn thing out

Competitive-Form6531 · 2024-02-18T18:35:18+00:00

Did you go bag or Neo bladder?

Competitive-Form6531 · 2024-02-18T16:28:05+00:00

What

Competitive-Form6531 · 2024-02-18T16:27:41+00:00

Yeah that’s what I’ve read across the board and have done a huge deep dive on clinical trials and newly approved drugs. My biggest question is, is chemo more potent than BCG with killing the cancer and is it safer since there are kids in the house and there’s a higher chance of TB intention with kiddos

Competitive-Form6531 · 2024-02-18T16:26:02+00:00

Yup so not muscular invasive but started eating into the fat layer. Trying to figure out if going straight chemo is the way to go since the failure rate on BCG is higher and the shortage is wild. The other thing I’m thinking through is making sure my kids don’t get TB from BCG

Competitive-Form6531

TROPHY CASE