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by Dionca
Wed Dec 26, 2018 9:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any body knows of Clinical trials for BRAF 600?
Replies: 16
Views: 2116

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

Wow, that's quite the Christmas present - a very impressive drop in CEA. That, combined with pain reduction and tumour shrinkage, sounds like you found the right trial. I'm very happy for you, and hope you continue to see good results.
by Dionca
Mon Dec 10, 2018 7:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 3965

Re: No longer NED - DEVASTATED

The only way I've ever got scan reports, is in person, at my oncologist's office (only then, can I get a copy). It's incomprehensible to me why a hospital would just mail out MRI results without having a doctor explain what is going on. Apart from it being inappropriate, how would they even know tha...
by Dionca
Fri Dec 07, 2018 11:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sunnybrook vs Princess Margaret Hospital in Toronto
Replies: 5
Views: 423

Re: Sunnybrook vs Princess Margaret Hospital in Toronto

Both Sunnybrook and PMH are excellent hospitals.

I can't offer any advice, but PMH claims that it has Canada's most comprehensive immunotherapy program, so may have the edge. https://www.thepmcf.ca/Our-Stories/Insi ... py-program
by Dionca
Fri Dec 07, 2018 10:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Im mentally breaking
Replies: 21
Views: 1249

Re: Im mentally breaking

You wouldn't be normal if you weren't anxious about your scan, especially the first one. I still take Ativan before going to find out my results. Your scan will either show that Folfox is working (so you can relax until the next one) or not (in which case, they will change your treatment plan). Chan...
by Dionca
Sat Dec 01, 2018 6:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A reaction to what?
Replies: 6
Views: 519

Re: A reaction to what?

A few hours after each infusion, I would get a headache and my throat would be sore to the point that it was difficult taking pills, as it felt like my throat was narrowing, and they would get stuck. This did improve a bit after the first few infusions. I also experienced coughing fits, so my onc re...
by Dionca
Tue Nov 20, 2018 11:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA as a marker during chemo?
Replies: 11
Views: 840

Re: CEA as a marker during chemo?

The protocol at the hospital where I had chemo was not to test for CEA or have scans, until a few weeks after chemo had ended. The reason being, is that CEA can rise due to inflammation etc and therefore is not always a good indication of what is actually happening. I happened to have a scan for an ...
by Dionca
Fri Nov 16, 2018 7:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sleeping with: bag, heart monitor and pump accached
Replies: 9
Views: 595

Re: Sleeping with: bag, heart monitor and pump accached

The chemo pump is attached via a tube, which is fairly long, so you have flexibility as to where it lies at night. It doesn't have to be on the same side as the port.
by Dionca
Tue Oct 02, 2018 10:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I am so worried.
Replies: 39
Views: 4646

Re: I am so worried.

It's not so much the size, but how far it has spread through the rectal/colon wall. See Weisssoccermom's explanation for the T/N/M (tumour/nodes/metastasis). The size of the mass does not determine the stage - it's based on the TNM.
by Dionca
Mon Oct 01, 2018 6:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I am so worried.
Replies: 39
Views: 4646

Re: I am so worried.

I don't have much to add to Weisssoccermom's excellent and thorough information and advice, other than to point out that you shouldn't be "preparing for the worst due to her age". She is about the average age for colon cancer and it can be curable. I know you are in shock right now, but ho...
by Dionca
Sat Sep 29, 2018 1:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSI-H with liver met, in search of help
Replies: 19
Views: 2087

Re: MSI-H with liver met, in search of help

Hi, my husband has same history. He is stage 4 rectum ca. And lots of liver mets.and surgeon says inoperable. We think immunoteraphy.and I ask you somethngs. Mr shows his liver mets but pet ct doesnt show. So we curious. Mr shows 12 mm liver met and little mets. We are very confused :( :( is that n...
by Dionca
Wed Aug 29, 2018 12:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 48
Views: 12878

Re: Keytruda....Working for MSS....Mutation Burden is the Key

I wonder, can Canadians get Foundation One testing? What exactly am I asking them for, (just for “mutation burden testing of my tumour”) and how much could I expect to pay, any ideas? Steph - here is a recent article posted on Colorectal Cancer Canada, that makes reference to the Foundation's mutat...
by Dionca
Sun Jul 08, 2018 2:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: lung nodules
Replies: 11
Views: 1456

Re: lung nodules

Try not to worry - they are tiny and could be unrelated to cancer. I've had liver, and then lung nodules pop up, but so far they haven't grown, so are hopefully benign. I think all they can do at this stage anyway, is to wait to see if they grow. Regarding CEA - check your blood test results, it sho...
by Dionca
Thu Jun 28, 2018 11:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Alberta, Canada——-coverage for Capecitabine (Xeloda)?
Replies: 2
Views: 296

Re: Alberta, Canada——-coverage for Capecitabine (Xeloda)?

It's on the Alberta Health Services drug benefit list. Here's the link https://www.albertahealthservices.ca/assets/programs/ps-1025651-drug-benefit-list.pdf Alberta Health Services shall provide cancer drugs specified in the Outpatient Cancer Drug Benefit Program, at no charge, to eligible residents...
by Dionca
Thu Jun 07, 2018 11:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Signs of travelling to lungs?
Replies: 10
Views: 1046

Re: Signs of travelling to lungs?

My CT scan always includes both abdomen and chest, so I thought that was pretty standard. The hospital sends me a form with the appointment date and shows chest and abdomen checked off. Why don't you call your dr's office tomorrow and ask them if both were included? I can understand the anxiety - ar...
by Dionca
Sun May 06, 2018 5:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Repeat Performance
Replies: 4
Views: 740

Re: Repeat Performance

I feel for you, having to go through this again, almost 20 yrs later. Were you on the 3 or 5 year colonoscopy follow-up routine? St Mike's has a good reputation, so I'm sure you will be in good hands. My gastro suggested that I go there, but I preferred the location of a different hospital (I also h...

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