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by Tim UK
Wed Aug 01, 2018 4:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Goodbye
Replies: 25
Views: 7029

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: 274

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: 2210

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: 1280

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: 5595

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: 657

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: 186
Views: 41640

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: 4177

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: 538

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: 6
Views: 1680

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...
by Tim UK
Sat Dec 16, 2017 5:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NCT02650713 - RO6958688 plus Atezolizumab
Replies: 6
Views: 1680

NCT02650713 - RO6958688 plus Atezolizumab

Hi I realise I haven't posted for a while and thought it might be helpful to circulate the answer to a PM I received from a fellow member recently. Please follow up with other questions and I'll be happy to try and answer. Best wishes, Tim My experience has been positive. I've been on the trial for ...
by Tim UK
Fri Sep 22, 2017 5:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Port Removal -- ASAP or wait for first scan?
Replies: 19
Views: 3279

Re: Port Removal -- ASAP or wait for first scan?

Hi
I have had mine for nearly 3 years. Started as Stage III then progressed early on to IV. It settled down after a couple of months, now feels like part of me, makes the whole extraction / infusion process painless and stress free. I would hang on to it for a while longer.
Good luck,
Tim
by Tim UK
Sat May 20, 2017 5:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS-CRC Immunotherapy Clinical Trial at ASCO-2017: RO6958688 + Tecentriq (ANTI-PDL1)
Replies: 5
Views: 2012

Re: MSS-CRC Immunotherapy Clinical Trial at ASCO-2017: RO6958688 + Tecentriq (ANTI-PDL1)

This is the trial I'm on, see earlier posts. I started in October '16. The trial is recruiting at multiple sites in the US and here in Europe.

I'm happy to answer any queries either here or via PM, recognizing of course that I'm just one case, and others will likely have different responses.

Tim
by Tim UK
Wed May 17, 2017 4:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy
Replies: 16
Views: 3577

Re: Immunotherapy

By the way, a message to Big Rob (and others with tricky inoperable liver mets), I had SBRT (cyber knife) radiotherapy on one of my liver mets 4 weeks ago. The first follow up scans show 50% shrinkage in that site but, quite interesting, a distantly located met in my peritoneum under my left ribs ha...
by Tim UK
Wed May 17, 2017 4:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy
Replies: 16
Views: 3577

Re: Immunotherapy

I have been on an immunotherapy combination trial (NCT02650713) since Oct 16. It follows previous treatments with (1) folfoxiri + avastin, then (2) targeted therapy with trametinib, dabrafenib, panitumumab. I'm stage 4 and MSS. It feels like the results from immuno can be slow in coming. In my case ...

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