Search found 76 matches

Go to advanced search

by Tim UK
Tue Oct 08, 2019 6:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 17581

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

In answer to an earlier question, my insurance company were open to funding this duo despite lack of approval by the drug commissioning body NICE (our FDA). I'm conscious that this was a real stroke of good fortune, arising from a clause in some UK policies that allows the consultant to make a speci...
by Tim UK
Wed Sep 25, 2019 6:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 17581

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

Hi I'm starting rego/nivo later this week. I'll post updates and would be grateful for news from others trying this combo. For those who have known me for a while on this forum, this is my 8th line in nearly 5 years. I have been stage 4 all the way (liver, peritoneum, lungs). I suspect this my last ...
by Tim UK
Mon Apr 01, 2019 3:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: oncolytic virus trials
Replies: 2
Views: 631

oncolytic virus trials

Hello all It's been a while since I posted. Sorry. Been ducking and diving with a few trials (anti-GITR then ERK inhibitor). Most enduring was the Roche CEA/TCB phase 1 trial in Barcelona that kept me going for about 18 months. Eventually all these ran out of efficacy so I'm back on the folfoxiri + ...
by Tim UK
Fri Nov 23, 2018 5:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coping with FOLFOX - first doses
Replies: 9
Views: 1568

Re: Coping with FOLFOX - first doses

Hey Big shout out from London to Melbourne. My wife's family are all there ... I love it. I'd say watch out for the steroids. You mentioned anxiety. I was on dexamethasone, and a doctor friend said that it can give you almost bipolar type mood swings (from super high energy to rock bottom lows). I l...
by Tim UK
Fri Nov 23, 2018 5:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfiri A Second Time
Replies: 3
Views: 1150

Re: Folfiri A Second Time

Hi

No answers I'm afraid ... just another person asking the same question. I'm about to start a "re-challenge" with folfoxiri plus avastin, having last tried it 3 years ago. I'll share my experience, but would also love to hear from others.

Best wishes,
Tim
by Tim UK
Wed Aug 01, 2018 4:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Goodbye
Replies: 25
Views: 9893

Re: Goodbye

Risto, thank you.
I think often about what it will be like towards the end for me, for my wife, kids, family and friends. Rarely is anyone brave enough and generous enough to broach the topic with such candour. My condolences to you.
Tim
by Tim UK
Tue May 29, 2018 9:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New study: beta-blockers (e.g. Propranolol) enhance immunotherapy?
Replies: 2
Views: 675

New study: beta-blockers (e.g. Propranolol) enhance immunotherapy?

http://news.psu.edu/story/497450/2018/01/08/research/beta-blockers-may-boost-immunotherapy-help-melanoma-patients-live Does anyone (or their onc) have a view on this recent Penn State study? The summary is that in a retrospective analysis of patients on immunotherapy, those that were also on pan bet...
by Tim UK
Mon May 21, 2018 7:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS-CRC: PD1/NKTR-214 Combo Trial Announcement
Replies: 5
Views: 3417

Re: MSS-CRC: PD1/NKTR-214 Combo Trial Announcement

Some recent press on this one citing ongoing responses

Nktr-214 plus nivolab

Does anyone have any views, or opinions from their oncs?
by Tim UK
Sun Apr 15, 2018 4:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tattoo during scope?
Replies: 10
Views: 2270

Re: Tattoo during scope?

Hi

My understanding is that is simply a way to mark the location and edges of the tumor. So when the surgeon goes in they can quickly and easily do the excision.

Tim
by Tim UK
Sun Apr 15, 2018 10:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Alcohol use since diagnosis
Replies: 28
Views: 7896

Re: Alcohol use since diagnosis

About a year after my diagnosis I proudly told my (30+ years' experience, professor-level) colorectal consultant that I hadn't had a drink for three months. He looked at me as if I was deranged and spluttered, "Are you quite mad? Why on earth not?". My only constraint now is absolute avoid...
by Tim UK
Sun Apr 15, 2018 10:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HIFU
Replies: 2
Views: 1053

HIFU

Hi Last week I had HIFU (focused ultrasound) treatment in Oxford, UK, on my two persistent mid-line scar mets. Each is about 25mm wide and embedded in muscle and scar tissue, about 5mm below the skin of my abdomen. I won't be able to update you all on results for a while but, in the meantime, if any...
by Tim UK
Sat Jan 06, 2018 2:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 61968

Re: any peeps with BRAF mutation on here?

Hi I was on the same triplet combo (MEK / EGFR / BRAF) but with different drugs - see my footer. I got about 9 good months out of it in early '16 including a brief NED. When it seemed to stop working I was desperate ... but that was 18 months ago, and I've been on a new trial since Oct 16. I've been...
by Tim UK
Tue Jan 02, 2018 9:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Healthy 42 year old diagnosed with stage 4 colon cancer
Replies: 17
Views: 5776

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

I was 43 when I got my stage 4 in early '15. Look through my old posts and footer to see what I have tried but in summary I'd recommend - get a full gene panel done ... will highlight whether you're a candidate for non-chemo genetic treatments - I'm BRAF mutant so did triplet therapy with dabrafenib...
by Tim UK
Tue Dec 19, 2017 5:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: how manage side effects of Mekinist (a MEK inhibitor)?
Replies: 3
Views: 966

Re: how manage side effects of Mekinist (a MEK inhibitor)?

Hi I was on a MEK inhibitor for 9 months in 2016. The GI adverse effects were varied and changed throughout the treatment (malabsorption, diarrhoea, cramping etc.). I would strongly recommend seeing a GI specialist who can monitor you and address each of these if/when they arise. It's tough to figur...
by Tim UK
Sun Dec 17, 2017 7:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NCT02650713 - RO6958688 plus Atezolizumab
Replies: 9
Views: 3001

Re: NCT02650713 - RO6958688 plus Atezolizumab

Hi re HIPEC, I have very mixed feelings. When I did it, the triplet therapy and immunotherapy programs weren't really an option ... so I did it, and was told afterwards that it hadn't gone as planned. (As I'm sure you know, they have to be confident that all macroscopic disease can be eliminated, le...

Go to advanced search