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by Dionca
Thu May 02, 2019 2:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Neuropathy improvement: individual experience
Replies: 20
Views: 1152

Re: Neuropathy improvement: individual experience

Don't place too much hope in a foot massager (that's the same as a TENS machine right?). I used one religiously starting midway through chemo, and for months after, hoping to ward off neuropathy, but it didn't do a thing for me. In fact, a cheap wooden foot roller helped me more (albeit temporarily)...
by Dionca
Wed May 01, 2019 11:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Neuropathy improvement: individual experience
Replies: 20
Views: 1152

Re: Neuropathy improvement: individual experience

I experienced exactly the same symptoms as you mentioned, including the weird "electric" sensation in my arms when outstretched. I think the unexpected (and potentially dangerous one) was the lack of balance in the shower. If I closed my eyes to shampoo my hair, I would be very unsteady an...
by Dionca
Wed Mar 27, 2019 11:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Slowly rising CEA..
Replies: 5
Views: 663

Re: Slowly rising CEA..

If you look at my signature, you will see that my CEA rose during chemo. When I was first diagnosed my CEA was 8.6 and went down to 1.2 after surgery. It then rose during chemo and levelled off after treatment was over. My oncologist said he doesn't usually test CEA during chemo, because inflammatio...
by Dionca
Sun Mar 03, 2019 5:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tumours shrinking....now what?
Replies: 11
Views: 710

Re: Tumours shrinking....now what?

I was pretty alarmed to hear that chemo was not offered for Stage 2 in Canada, so I checked up on this. However, the Standard of Care seems to be the same as in the US. While most Stage 2s don't get chemo, those with a high risk of recurrence, will get it. High risk is determined by: - The tumour is...
by Dionca
Sat Feb 09, 2019 7:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfox protocols
Replies: 9
Views: 944

Re: Folfox protocols

I dug out some of the info (shown below) that I researched while undergoing FOLFOX. I did get permanent neuropathy in my feet, despite taking vitamins. My hands were pretty bad as well, but that went away in time, and they are fine. From reading other accounts, it seems to be the feet, are more impa...
by Dionca
Mon Feb 04, 2019 3:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Terrified - 3cm polyp
Replies: 16
Views: 1681

Re: Terrified - 3cm polyp

If your dr is experienced, he can probably tell by just looking at it, if it's cancer or not. Immediately after my colonoscopy, the dr told me it was cancer, and recommended a surgeon, without even waiting for a biopsy. I was then given a blood test, which showed an elevated CEA. Your dr told you th...
by Dionca
Mon Feb 04, 2019 3:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coffee...yes or no?
Replies: 17
Views: 1577

Re: Coffee...yes or no?

Coffee was the only thing I enjoyed drinking during chemo - cold drinks/water had a metallic taste and I had to force them down. If I had to give up my morning coffee, I would have been really depressed. So my take is, that it was beneficial to my mental health, during a time when I neeed a boost, a...
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: 2709

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: 5124

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: 643

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: 1886

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: 765

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: 1190

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: 864

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: 5678

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.

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