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by Steph20021
Mon Dec 10, 2018 9:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: In canada MSK not option
Replies: 8
Views: 452

Re: In canada MSK not option

Hello, Does anyone have experience with immunotherapy at Sunnybrook or any other Ontario hospital. Could you kindly share the same or recommend Dr. Thanks. I’m in a phase 3 trial at sunnybrook but it’s not an “immunotherapy” trial, its targeted at my mutation. But if you browse the immuno trials fo...
by Steph20021
Mon Dec 10, 2018 9:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sunnybrook vs Princess Margaret Hospital in Toronto
Replies: 5
Views: 148

Re: Sunnybrook vs Princess Margaret Hospital in Toronto

Both are excellent. I researched clinical trials that were open at both not too long ago and Sunnybrook had the best one for ME at the moment given my mutation. So that’s where I am right now. I don’t think you can go wrong with either. Parking at sunnybrook costs more. But if you are doing a trial,...
by Steph20021
Sat Dec 08, 2018 6:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

The trial continues to go smoothly. The only side effects I have are drowsiness/fatigue which could be caused by my pain pump actually and receiving more medicine than I actually need as my pain has gone way down. I use only one bolus a week and before about 3 a day. The rash is still only on my fac...
by Steph20021
Wed Nov 14, 2018 10:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mass in sigmoid colon and one ovary
Replies: 8
Views: 478

Re: Mass in sigmoid colon and one ovary

My colon cancer was in my colon and on one ovary at diagnosis. I had surgery to remove the colon and ovary and did 6 months of folfox as adjuvant chemo and they were hopeful I was cured, sadly my first scan after the chemo showed it was then on my other ovary. So great plan that they intend to do th...
by Steph20021
Sat Nov 10, 2018 10:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Study - Sensitive Topics
Replies: 8
Views: 773

Re: Study - Sensitive Topics

Personally, I like knowing that my answers are confidential so if I could do them online and not have to hand a paper in, and if it was anonymous with a number so that people wouldn’t trace it back to me then I’d be comfortable answering. I’ve had one or two questions asked on paper among other heal...
by Steph20021
Sat Nov 10, 2018 9:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

Beacon Trial Update: CYCLE 1: Night 1- lots of vomiting all night and a blinding migraine Day 2-still a terrible migraine Day 3-headache and body aches but I go to work; I believe I start to get a couple red welts and pimples on my face and going down my neck a bit Day 4- body aches worsen to extrem...
by Steph20021
Wed Nov 07, 2018 2:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

You've been through a very tough time. I hope that this trial works for you. Thanks Mike. I really hope it helps too. It has been quite the journey these last 4.5+ years I have to say. There was a lot of human error which resulted in a delay of starting the beacon trial but I’m glad to finally have...
by Steph20021
Wed Nov 07, 2018 2:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

Beacon Trial update: Started the trial yesterday (double arm-encorafenib And Cetuximab) and finished the infusion about 430pm and started vomiting with a killer migraine at 5:30pm. No premeds were given-is this normal? Called the oncall last night and got ondansetron late last night. It was a terrib...
by Steph20021
Mon Nov 05, 2018 7:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

I am finally starting the Beacon trial tomorrow. I got randomized into the doublet arm so I’ll be receiving the encorafenib (oral pill) and cetuximab (infusion) but not the binimetinib in the triplet arm. Oh well. Better than the control I guess, fingers crossed. I’ll let you know how it goes.
by Steph20021
Mon Oct 22, 2018 11:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update
Replies: 6
Views: 642

Re: Update

As someone who is about to start her first clinical trial, I am angry to read that your young husband has tried 3 (!!!) clinical trials and they have all failed him already. They haven’t given him enough time! Though it’s never going to be enough time is it? This disease pisses me off and the only t...
by Steph20021
Mon Sep 24, 2018 8:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New hope for BRAF mutation?
Replies: 7
Views: 1503

Re: New hope for BRAF mutation?

I’ve never heard of getting the fraction before. I thought we either had the mutation or we didn’t. I’ll have to ask about this and do some research. They haven’t asked me for a liquid biopsy to do the trial I’m going through the prep for, just whether I have the mutation or not. I’m curious to know...
by Steph20021
Tue Sep 18, 2018 8:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

Thanks Mike. I will for sure check in often and keep you all posted.
by Steph20021
Tue Sep 18, 2018 6:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 11
Views: 1120

Re: Any body knows of Clinical trials for BRAF 600?

My wife had 8 rounds of FOLFOX + ERBUTAX and 4 rounds of FOLFIRI + ERBUTAX but the recent scans showed new tumors in the peritoneum. Oncologist wants her to stop Conventional Chemo and start with clinical trials. We live in DFW area. Does any one know of promising clinical trials for BRAF mutation ...
by Steph20021
Tue Sep 18, 2018 5:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 186
Views: 42040

Re: any peeps with BRAF mutation on here?

I just learned I probably still have the brafv600e mutation and I’ll be starting the beacon trial soon in Toronto once my mutation is confirmed from my 2015 surgery sample. Not sure which arm I’ll get into since it’s random assignment. Apparently the mutation is rare, only 5-10% of people have it so...
by Steph20021
Wed Sep 05, 2018 8:00 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Phase 2 vs Phase 3 trials
Replies: 4
Views: 640

Re: Phase 2 vs Phase 3 trials

Thank you. I just re-read them. There’s two phase 3 trials in Toronto and participants are told whether they are getting the controlled standard treatment or the experimental one. That’s what I was hoping and expecting. What’s the difference between a phase 2 and a phase 3 trial? Also, is there a ch...

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