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by Rock_Robster
Sun May 19, 2024 11:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LARS improvements
Replies: 2
Views: 168

Re: LARS improvements

Great find, and thanks for posting! Aside from Imodium (and cutting out coffee), the thing that made the biggest difference for me was self-administered tap water enemas. I got them down to a fine art, and could get up to 24 hours of complete LARS relief if done well. Fantastic option to have, parti...
by Rock_Robster
Wed May 15, 2024 9:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

R_R, Sorry to lean on you so much here, but searching just doesn't seem to get many answers, and I have 2 new questions. 1) Did you find wearing your bag horizontally or vertically was easier with your StealthBelt? 2) Did you have a Loop Ileostomy with an irregular stoma or an End Ileo w/ a nice ro...
by Rock_Robster
Tue May 14, 2024 6:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Imodium for Life ?
Replies: 2
Views: 291

Re: Imodium for Life ?

My understanding is you can, yes. I’ve taken 2 pills before each meal for about 4 years now since my rectal surgery and having my ileostomy reversed. My stoma nurse said the most she’s seen is one patient who takes 32 tablets per day, without any bad effects.
by Rock_Robster
Sat May 11, 2024 7:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

Good to know what your focus areas are Joe! 1. My view is if something it’s important to you, it can be made to happen. Veganism could be tricky but surely not impossible. The problem is that high insoluble fibre foods are notorious for causing ileostomy complications, however high soluble fibre is...
by Rock_Robster
Fri May 10, 2024 5:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

Good to know what your focus areas are Joe! 1. My view is if something it’s important to you, it can be made to happen. Veganism could be tricky but surely not impossible. The problem is that high insoluble fibre foods are notorious for causing ileostomy complications, however high soluble fibre is ...
by Rock_Robster
Thu May 09, 2024 9:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

Not trying to palm off but this is a great resource for all Ostomy types similar to this one (but of course not as good :D ) - saved my bacon several times: https://www.uoaa.org/forum/index.php I had an ileostomy for 6 months and will chime in where I can, but in my experience the issues can be very...
by Rock_Robster
Tue Apr 30, 2024 8:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trial update - VAXINIA CF33 - it’s over
Replies: 9
Views: 1436

Trial update - VAXINIA CF33 - it’s over

Well, the trial is over for me. I’m not anyone could have seen this coming. Just after my third intratumoural injection of the oncolytic virus over 2 weeks, I spent a painful 7 hours in ER with intractable vomiting and a fever. They ran a sepsis protocol, got me stable, and admitted me to hospital t...
by Rock_Robster
Sat Apr 27, 2024 8:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone else struggling to live life normally?
Replies: 6
Views: 869

Re: Anyone else struggling to live life normally?

Or, let’s think of it as a game theory set (this would be shown better as a tree, but we work to the limitations we have!). First, let’s simplify. You have two options: live Hopefully ( Hope ) or live Fearfully ( Fear ). Cancer has two options: Recur ( Recur ), or Don’t Recur ( noRecur ). Let’s also...
by Rock_Robster
Sat Apr 27, 2024 8:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone else struggling to live life normally?
Replies: 6
Views: 869

Re: Anyone else struggling to live life normally?

You seem like a logical guy, so here's my approach.

What would the regret be if you lived your life ‘normally’ without fear of cancer, and ended up having a recurrence at some point?

Would that situation be any worse than if you had lived your life in constant fear of recurrence and then had one?
by Rock_Robster
Sat Apr 20, 2024 11:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colonoscopy prep question
Replies: 3
Views: 4800

Re: Colonoscopy prep question

If you’re in the “clear liquid” window (which I think was only ~24 hours for mine), the test was whether you could read a newspaper through a glass of the liquid.
by Rock_Robster
Tue Apr 02, 2024 11:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 15
Views: 8804

Re: VAXINIA (CF33 + hNIS) clinical trial

Another week and another dosing done - that makes 2 intratumoural doses in total, plus two liver biopsies. I got a brief look at my pathology and my liver enzymes were very elevated - clearly it doesn’t enjoy frequent stabbing and injection with strange viruses! Thankfully bilirubin is still ok in s...
by Rock_Robster
Wed Mar 27, 2024 11:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 15
Views: 8804

Re: VAXINIA (CF33 + hNIS) clinical trial

mobrouser wrote:What is a SPECT scan? Different than a PET scan?

Yes similar concept but a bit different in practice - I understand they’re using it to track the movement of the virus via a radiotracer:

https://my.clevelandclinic.org/health/d ... spect-scan
by Rock_Robster
Tue Mar 26, 2024 9:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 15
Views: 8804

Re: VAXINIA (CF33 + hNIS) clinical trial

Just a very short update - had the 2nd dosing today, along with a lot more bloods, swabs etc plus a SPECT scan (which was new to me). The intratumoural delivery into the liver has been fine so far, but I have to say the flu-like side effects have been real! A decent fever on most days, serious fatig...
by Rock_Robster
Sat Mar 23, 2024 11:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung met
Replies: 23
Views: 5950

Re: Lung met

roadrunner wrote:This sounds like a malignant pleural effusion.

If so if can be drained for her comfort (thoracentesis), sometimes along with a procedure to reduce the risk of it recurring (pleurodesis).
by Rock_Robster
Sat Mar 23, 2024 3:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung nodules and genetic testing
Replies: 41
Views: 9338

Re: Lung nodules and genetic testing

...I just recently been diagnosed after my colonscopy.... I had a CT scan of my chest, pelvis and abdomen and on the CT scan they said they couldn't see any spread. ... It was never mentioned that it was on my original scan, maybe it was and the surgeon just didn't mention it? Also on my first scan...

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