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by Rock_Robster
Sat Dec 26, 2020 7:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo response after 3 cycles
Replies: 5
Views: 968

Re: Chemo response after 3 cycles

Mark that’s great news; if any chemo was going to do it then it would be FOLFOXIRI. I suppose if the lesions were small then it’s always possible. I guess the big question is, what happens now... watch and wait? Attempt to biopsy (maybe too small)? Repeat PET (may also be too small)? Whatever the re...
by Rock_Robster
Tue Dec 22, 2020 2:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 “no cure without surgery”
Replies: 23
Views: 3090

Re: Stage 4 “no cure without surgery”

Hi Gina, My $0.02, for what it is... I always say, the best and worst part about cancer is that anything is possible. Statistically speaking there are two ‘reliable’ pathways to a durable NED - (1) a ‘radical resection’ (ie complete surgical removal of all macroscopic disease), or (2) a systemic imm...
by Rock_Robster
Sun Dec 20, 2020 7:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My story
Replies: 8
Views: 2092

Re: My story

Hi Henny, it’s a late response but better than never I guess. One phrase from research I hung onto: “the presence of poor prognostic factors does not preclude a favourable outcome”. The point is these are all just statistical indicators, NOT predictors. I was initially staged as stage IVa, with an N...
by Rock_Robster
Sat Dec 19, 2020 6:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New to the Stage IV club
Replies: 9
Views: 1222

Re: New to the Stage IV club

Thanks all, this is great. I meet with oncologist on Monday and it looks like I have 3 things to add to the discussion: MSI BEACON HAI pump Just one more to add - confirm that the BRAF mutation is indeed the v600e variant. Majority are, but around 25% aren’t and this can have very different implica...
by Rock_Robster
Fri Dec 18, 2020 9:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New to the Stage IV club
Replies: 9
Views: 1222

Re: New to the Stage IV club

Welcome, and some great advice above. Also excellent that they started you on FOLFOXIRI. Given the BRAF mutation I’d also suggest making sure you’re in a place that can get you access to the latest targeted BRAF protocols, eg BEACON, and also perhaps some of the newer trials like BREAKWATER. Also it...
by Rock_Robster
Fri Dec 18, 2020 8:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1 year clear from stage IV
Replies: 22
Views: 4122

Re: 1 year clear from stage IV

Great news Rob. I’m sure you’re enjoying being NED. We re all glad you posted, gives us hope. How has your lifestyle changed? Are you more conscious of your diet, are you taking additional supplements? Mark dale Thanks Markdale! I take a laundry list of supplements and off-label drugs that I worked...
by Rock_Robster
Wed Dec 09, 2020 3:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1 year clear from stage IV
Replies: 22
Views: 4122

1 year clear from stage IV

Hi all, I wasn’t going to post anything for this, but I remembered how much hope posts like this gave me when I was starting out. I used to screencap them and save them in my favourites to read when I was feeling hopeless. Well, yesterday I got the news that my 1 year CT scan was all clear. This fol...
by Rock_Robster
Sat Dec 05, 2020 2:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 in Australia.
Replies: 23
Views: 4261

Re: Stage 4 in Australia.

Hey Mark, ok, makes sense. Given you’re in Melbourne I can perhaps be a bit more help now. Sounds like you’ve had good care there at Dandenong. But if you’re considering looking further (noting Dandy don’t seem to have a dedicated thoracic service), given your staging (like mine), I’d strongly recom...
by Rock_Robster
Fri Dec 04, 2020 5:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 in Australia.
Replies: 23
Views: 4261

Re: Stage 4 in Australia.

Mark, just to add to the above... it’s sounding like you’re in a pretty hopeful position right now, which is fantastic. Where are you based? I’d definitely recommend seeing a top thoracic surgeon about the lung stuff, and if this doesn’t yield results let me know and I’ll put you onto a mate who run...
by Rock_Robster
Thu Dec 03, 2020 4:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 in Australia.
Replies: 23
Views: 4261

Re: Stage 4 in Australia.

Hey Markdale, stage IV in Melbourne here. I was very lucky to have amazing, aggressive treatment from the start, and so far I’ve had a very good outcome. Unfortunately you’re right though that I’ve heard of others where this hasn’t always been the case (especially through public oncology, and in reg...
by Rock_Robster
Fri Nov 27, 2020 2:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with a local recurrence?
Replies: 10
Views: 1549

Re: Anyone with a local recurrence?

Thank you Rock Lobster I was just not finding much info, and because I have symptoms that are concerning me, I want to have some idea of what I’m looking at. Ksue No worries; given you’ve had surgery and chemo I’m sure there’s plenty of more benign reasons for your symptoms, but good to be cautious...
by Rock_Robster
Thu Nov 26, 2020 8:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with a local recurrence?
Replies: 10
Views: 1549

Re: Anyone with a local recurrence?

It happens but definitely less common in stage IV than distant recurrence (in part because complete primary resection initially is more often possible). I believe frequency is around 5-15% depending on location, grade and treatment of initial tumour. Treatment depends on size and location, but can b...
by Rock_Robster
Sun Sep 06, 2020 6:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Inflammatory lesions on PET
Replies: 2
Views: 784

Re: Inflammatory lesions on PET

I haven’t had this exact situation but I can understand your onc’s position. Uptake is borderline and it’s in an atypical location for a CRC met, and you did (what I’d consider) strenuous exercise the day prior heavily emphasising that side of your body (assuming you’re right-handed). So definitely ...
by Rock_Robster
Wed Sep 02, 2020 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Silly Question
Replies: 17
Views: 4287

Re: Silly Question

I received a bracelet but I’ve never worn it; very few medics here would be port access trained, and to be honest I don’t think I’d want them messing with it in a non-sterile field setting anyway. I was a volunteer EMT and we would never touch a port for IV access. Carrying the card in your wallet i...

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