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by Rock_Robster
Fri Oct 11, 2019 6:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: FOLFOX vs. FOLFIRI
Replies: 9
Views: 392

Re: FOLFOX vs. FOLFIRI

Hi Rachel, my answers below: 1. I did 6 cycles of FOLFOX prior to stopping for surgery. 2. I restarted after surgery, stopping oxaliplatin after 9 cycles due to a pretty severe allergic reaction (not pleasant - can’t recommend). 3. I am now on FOLFIRI and the results have been very similar to FOLFOX...
by Rock_Robster
Wed Oct 09, 2019 7:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice Needed: Is lung surgery the best approach?
Replies: 9
Views: 349

Re: Advice Needed: Is lung surgery the best approach?

Just one other more general comment on stage IV treatments... There are a lot of treatments for metastatic CRC which appear to have pretty disappointing results on average, but may have profound benefits, potentially even curative, for a modest subgroup of patients. The problem is we don’t yet have ...
by Rock_Robster
Wed Oct 09, 2019 7:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice Needed: Is lung surgery the best approach?
Replies: 9
Views: 349

Re: Advice Needed: Is lung surgery the best approach?

Rob’s view on question 5, based on a mixture of decent research, dubious research, and a year of personal observation. There’s a few caveats in there as I don’t know the age and health status of your husband. In an otherwise fit patient with a good performance score, any surgery with a reasonable p...
by Rock_Robster
Wed Oct 09, 2019 5:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice Needed: Is lung surgery the best approach?
Replies: 9
Views: 349

Re: Advice Needed: Is lung surgery the best approach?

Rob’s view on question 5, based on a mixture of decent research, dubious research, and a year of personal observation. There’s a few caveats in there as I don’t know the age and health status of your husband. In an otherwise fit patient with a good performance score, any surgery with a reasonable po...
by Rock_Robster
Tue Oct 08, 2019 7:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda Side Effects: bad joint pain
Replies: 19
Views: 1909

Re: Keytruda Side Effects: bad joint pain

In a lot of ways I feel incredibly lucky: despite being Stage IV, all I have is this 5mm or so subcapsular liver node. I’m really sorry you’re having to go through this boxhill - indeed I hope the treatments can help with the side effects soon! Maybe a really stupid question - but given it’s so sma...
by Rock_Robster
Sun Oct 06, 2019 9:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any prepping and scoping buddies out there ?
Replies: 25
Views: 1001

Re: Any prepping and scoping buddies out there ?

I read that in Asia and Europe no med is used. I had a colonoscopy in Europe (Netherlands), and while they did sedate me I was definitely very conscious and alert through the whole thing. Wasn’t particularly uncomfortable though and makes me think we probably over-anaesthetise a big here (Australia...
by Rock_Robster
Sun Oct 06, 2019 7:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long oxilaplatin can be taken?
Replies: 6
Views: 708

Re: How long oxilaplatin can be taken?

Hi Suniva, A ‘standard’ full course of oxaliplatin is 12 cycles (24 weeks), but in trials typically around 80% of patients don’t make it this far - needing either a dose reduction or to change treatments due to side effects. I did 6 cycles then had some delayed-onset neuropathy which almost fully re...
by Rock_Robster
Sat Oct 05, 2019 9:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2426

Re: CRC Veteran Check-In! LAR Syndrome question

Lee do you use a stealth belt for your colostomy, or just leave it under your clothes? Also does the bag not come with it's own built in wafer? With the Ileo bag I never had to buy any wafer, just the barrier ring. I used two-piece ileostomy solutions. The advantage is that you can take the bag off...
by Rock_Robster
Tue Oct 01, 2019 10:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Got post-op staging
Replies: 20
Views: 1381

Re: Got post-op staging

Absolutely right - the most important thing is that they got negative (clear) margins, and those 6 positive lymph nodes are out! 22 is a good number to sample so there’s a great chance they got it all, and the clean-up chemo can do it’s job on any little stragglers that may be hanging behind. I was ...
by Rock_Robster
Tue Oct 01, 2019 12:14 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any riders out there?
Replies: 11
Views: 1086

Re: Any riders out there?

Hey hey. Though my surgeon looked at me sternly and told me to sell the bike after all his excellent LAR work and my excellent recovery four years ago, I commute on a new Honda Metropolitan 49cc ever since my Ruckus started becoming increasingly troublesome. I didn't ride the first year post-surger...
by Rock_Robster
Sun Sep 29, 2019 2:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ca19-9 or ca199
Replies: 3
Views: 665

Re: ca19-9 or ca199

I can’t add anything to this discussion sorry but would like to say it’s good to hear from you rp1954 :) . Hope all’s well.
by Rock_Robster
Sun Sep 29, 2019 12:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: RC - I don’t understand why J Pouch
Replies: 8
Views: 1003

Re: RC - I don’t understand why J Pouch

No worries at all, glad it’s of some help. Also just for interest, I asked for a J-pouch but during surgery there wasn’t enough room in my pelvis to create one, so I also have an end-to-end anastomosis. Apparently after the first year the outcomes are similar, but the first year is more pleasant wit...
by Rock_Robster
Sat Sep 28, 2019 8:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Talk me down..CT results...
Replies: 8
Views: 1281

Re: Talk me down..CT results...

AmyG wrote:Tons of help. :lol:

Like, I know it's probably nothing, but it's new for me. Cancer does stupid things to your emotions.

It sure does! Just when you think the physical game is done, the mental game begins. Sorry for the rollercoaster; hope the onc meeting goes well.
by Rock_Robster
Sat Sep 28, 2019 8:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Talk me down..CT results...
Replies: 8
Views: 1281

Re: Talk me down..CT results...

OK here’s my attempt: - 1.2cm is not unusual for an an axillary node; indeed as you suggest 20mm would be closer to a more useful pathological cutoff - the axilla is not a typical metastatic pattern for CRC (described in one paper I found as “virtually unheard-of” and “exceedingly rare”) - lymph nod...
by Rock_Robster
Sat Sep 28, 2019 7:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LAR Syndrome and Water
Replies: 15
Views: 1289

Re: LAR Syndrome and Water

If you drink a lot of water, you need to maintain your electrolytes. There are cases of marathon runners getting heart attacks by running, drinking a lot of water and then dying. The water can flush electrolytes. Very good point Mike, I did over do it yesterday. I will be having some electrolyte re...

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