Search found 553 matches

Go to advanced search

by Steph20021
Sat Jan 26, 2019 1:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain
Replies: 9
Views: 953

Re: Pain

This was very informative and interesting thanks for sharing miss molly. Welcome to the forum. With regards to any medical advice : you need to contact your own doctor and seek help for your pain, from the medical experts who know your situation best. CRguy I agree with CR guy to check-in with your ...
by Steph20021
Sat Jan 26, 2019 1:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does anyone talk to StephenWinsToday?
Replies: 2
Views: 565

Re: Does anyone talk to StephenWinsToday?

He is quite active on the various CRC groups on Facebook. Still doing well, and now serving (iirc) as an advocate via Colon Cancer Alliance. The groups are well worth joining for information and networking. I'm not a fan of FB at all, and wouldn't be there if it wasn't for those groups. Feel free t...
by Steph20021
Sat Jan 26, 2019 12:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does anyone talk to StephenWinsToday?
Replies: 2
Views: 565

Does anyone talk to StephenWinsToday?

It’s been a while since StephenWinsToday has been active on this board. Does anyone talk to him and know how he is doing? Is he still NED? Is he having routine blood tests and scans? I miss following his journey and getting updates.
by Steph20021
Fri Jan 11, 2019 12:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Book Group
Replies: 10
Views: 1958

Re: Book Group

Julie Yip-Williams’ book (2019) https://www.amazon.com/Unwinding-Miracle-Memoir-Death-Everything/dp/0525511350 Julie's book is being released two weeks from now, on the occasion of Chinese New Year Really looking forward to read Julie’s book. All the feelings & history with her own family - tha...
by Steph20021
Thu Jan 10, 2019 12:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 57149

Re: any peeps with BRAF mutation on here?

I just wanted to update this thread that just before Christmas 2018 I had my first CT scan since starting the Beacon Trial (Brafv600e mutant) at the start of No ember 2018 and I’ve had small shrinkage in a couple areas and stability with the rest. My pain is almost non-existent in my abdominal wall ...
by Steph20021
Tue Jan 01, 2019 1:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 16
Views: 3134

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

Thanks Dionca. The CT report is a bit underwhelming and only shows small shrinkage with the biggest shrinkage being about 1 cm off the side of my biggest rumour that used to cause pain. Nothing new and my chest is still clear. I also hope for continued results for a long time on this trial. Wow, tha...
by Steph20021
Tue Jan 01, 2019 1:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Still NED!!!!
Replies: 25
Views: 5442

Re: Still NED!!!!

I’m so happy for you DE! Now up next, fixing this pain issue for you! Onwards and upwards!
by Steph20021
Wed Dec 26, 2018 9:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 16
Views: 3134

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

NHMike, I am thrilled, but yes I hope the shrinkage continues because with folfox and folfiri I only saw shrinkage with my first scan and from that point on they only kept me stable. I am really hoping this isn’t the same. I’d love to hear from someone who was in my arm of the study and had lasting ...
by Steph20021
Wed Dec 26, 2018 9:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 16
Views: 3134

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

I am still waiting to see the report from my first CT since starting the Beacon trial but I wanted to share some news. A reminder that I’m in the arm of trial with cetuximab and encorafenib. On November 20 my CEA was 15.9 and on December 24 (after 5 cycles) it was down to 5.1!!! I haven’t been this ...
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: 1339

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: 832

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: 16
Views: 3134

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: 1292

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: 1472

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: 16
Views: 3134

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...

Go to advanced search