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by Rock_Robster
Mon Jan 13, 2020 7:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 301
Views: 48107

Re: My CRC with liver mets journey

It feels a little scary - I think the chemo maybe provides a false sense of security - and maybe too good to be true. Great news! Congratulations :D I think what you’ve said above is very accurate. I had surgery, did my standard adjuvant chemo, then had another liver resection for a small spot. I a...
by Rock_Robster
Sat Jan 11, 2020 1:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Baseline CEA levels
Replies: 17
Views: 2324

Re: Baseline CEA levels

Just curious about what everyone's CEA was when they were diagnosed. I've been searching old threads and some of you have it in your signature, but not all of you. Anyone else with a super high CEA? Can't seem to find anyone else who had a CEA of above even 10,000. My boyfriend's was 70,480 at diag...
by Rock_Robster
Wed Jan 08, 2020 7:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Finally staged at IIIc
Replies: 7
Views: 638

Re: Finally staged at IIIc

Hey mate, firstly I’d say - absolutely yes. As you no doubt know, the recurrence/survival stats are based on the outcome of a large number of people. Of course your outcome will be binary - either you will or won’t have a recurrence, and nothing can tell you this definitively now. The question is, w...
by Rock_Robster
Wed Jan 08, 2020 8:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 31
Views: 4238

Re: Stage 4 hope to share

Haha yes. I actually have used the screenname pyro70 for many years. “pyro” was the model of my favorite windsurfing sail, 7.0 m2 was the size. So I didn’t even know pyro was taken when I took it ;) Ever seen Top Gun? Turns out those funny names the fighter pilots all go by is a real thing, thus my...
by Rock_Robster
Tue Jan 07, 2020 5:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Suggestions for treatment facility for liver and lung mets
Replies: 18
Views: 825

Re: Suggestions for treatment facility for liver and lung mets

It’s a long flight but you’re welcome to come see my liver surgeon in Melbourne! He’s an awesome guy - has always approached me with curative intent, and has done two resections on me now (the second was pretty tricky too - deep, nudging the hepatic vein). I believe he does around 150-200 livers + p...
by Rock_Robster
Tue Jan 07, 2020 1:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The Liver Spots they missed
Replies: 8
Views: 705

Re: The Liver Spots they missed

[duplicate post - deleted]
by Rock_Robster
Tue Jan 07, 2020 1:34 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The Liver Spots they missed
Replies: 8
Views: 705

Re: The Liver Spots they missed

Hi, sorry to hear this but great that they could operate promptly. I had a similar issue - not for my initial diagnosis, but shortly after my rectal resection. An abdo CT scan said ‘all clear’, a PET said ‘something fishy’, then a liver MRI found a small met hiding near the hepatic vein. Fortunately...
by Rock_Robster
Mon Jan 06, 2020 6:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Finally staged at IIIc
Replies: 7
Views: 638

Re: Finally staged at IIIc

Sorry mate, obviously not the news you were hoping for. Sounds like you’ve landed in the worst house on the best street (I say this as an adaption of my initial diagnosis - the best house on the worst street). Clear margins are great news, and 16+ nodes is a very decent harvest so hopefully some com...
by Rock_Robster
Mon Jan 06, 2020 4:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Suggestions on where to go and what to do next
Replies: 6
Views: 452

Re: Suggestions on where to go and what to do next

Sorry one other thing to add; I just noticed you asked for ideas as to where to go for this. A couple of more renown HIPEC centres would be: USA: - Dr Sugarbaker, Washington Hospital, DC (inventor of the procedure) - Dr Sardi, Mercy Hospital, Baltimore UK: - The Christie, Manchester - St Marks, Lond...
by Rock_Robster
Sun Jan 05, 2020 9:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Belly band?
Replies: 2
Views: 307

Re: Belly band?

I’m not sure about belly bands but I know some people find compression sportswear comfortable as they provide more support? Could wear something like this under normal clothes: https://www.asos.com/au/skins/skins-dna ... rd/8963488
by Rock_Robster
Sun Jan 05, 2020 9:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New member / ileo problem
Replies: 4
Views: 228

Re: New member / ileo problem

Yes this is generally considered normal, provided the movements aren’t bloody or overly painful. The “inactive” portion of colon you have can still produce its own mucus (looks a bit like a pale gel), that can need to be expelled. I also get gas with my ileo - both in the bag and passed normally. Fi...
by Rock_Robster
Sun Jan 05, 2020 9:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Suggestions on where to go and what to do next
Replies: 6
Views: 452

Re: Suggestions on where to go and what to do next

“No HIPEC until it’s stable” sounds a bit odd to me, given peri mets typically don’t respond famously well to IV chemo. I’d definitely be waiting for the opinion of the HIPEC surgeon and not taking the oncologist’s word. If you don’t feel they are being suitably aggressive then you might seek a 2nd ...
by Rock_Robster
Sun Jan 05, 2020 2:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on recovery from ULAR ileo reversal
Replies: 14
Views: 580

Re: Question on recovery from ULAR ileo reversal

Rock, This is what i used for in case of accidents: https://www.amazon.com/gp/product/B008RJV0L4/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 Everyone is different, I know Gravelguy has had issue and posted as such. I have been up and down, most days are not great. Yes I can go places and do...
by Rock_Robster
Sat Jan 04, 2020 1:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on recovery from ULAR ileo reversal
Replies: 14
Views: 580

Re: Question on recovery from ULAR ileo reversal

Hi Rob, I just use the cheapest size 1 (smallest) underwear liners I can find. I use the slim ones not the thick kind. I also needed to switch from loose boxer type underwear to more compression short type after the surgery. The extra support helped and also helped keep liners where they needed to ...
by Rock_Robster
Fri Jan 03, 2020 3:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on recovery from ULAR ileo reversal
Replies: 14
Views: 580

Re: Question on recovery from ULAR ileo reversal

I would also add that for me, sitting triggered having to go to the bathroom. Even1 1 1/2 years out sitting on hard surfaces will often give me the urge to go. So if you have a desk job I would make sure you have a very cushioned chair and move around as much as possible. Dave Also if you don’t min...

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