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by Stewsbetty
Fri Apr 20, 2018 4:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 2272

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

I seem to have become quite forgetful as compared to earlier especially with regards to names and upcoming appointments. Could it be related to Nivolumab ? Has anybody else on Opdivo /Keytruda experienced similar memory loss related symptoms. Occasional muscular pains are still there. But overall, ...
by Stewsbetty
Sun Feb 25, 2018 11:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: So worried and unsure
Replies: 4
Views: 504

Re: So worried and unsure

Is there a reason for just doing the sigmoidoscopy? In my opinion if you are doing the prep they might as well scope the whole thing. My tumour was at the juncture of the small and large bowel. A sigmoidoscopy would have seen no problems.
by Stewsbetty
Thu Jan 11, 2018 7:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question for Canadians re genomic testing
Replies: 20
Views: 1213

Re: Question for Canadians re genomic testing

I pushed to have my tumour tested for MSI status and it was done on the tumour sample, not a blood test. I also asked about mutations and that was done as a standard I think. I live in BC. I would enquire as to whether there are still samples of his tumour left. I wouldn’t be surprised if there were...
by Stewsbetty
Mon Jan 01, 2018 3:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda and dry mouth
Replies: 5
Views: 1024

Re: Keytruda and dry mouth

Oh my goodness, the dry mouth is horrible! Thank goodness the medication is working for me. I drink way more water now which I guess is a benefit. I have had 5 cycles now and I am thinking the dry mouth gets worse toward the end? Not sure about this but that is how it seems to me. Just found this li...
by Stewsbetty
Wed Dec 20, 2017 2:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dx at 28 with IIIb. What now?
Replies: 7
Views: 841

Re: Dx at 28 with IIIb. What now?

I am a fair bit older than you but also developed CC in the ascending colon. I would advise you to ask about testing for micro satellite status. I am MSI high and am responding very well to immunotherapy. I previously failed 2 chemos and my stage 3b became metastatic in less than a year. Because of ...
by Stewsbetty
Sun Dec 10, 2017 7:24 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CT Scan Just came in Liver Met (one)
Replies: 62
Views: 3254

Re: CT Scan Just came in Liver Met (one)

Thanks everyone. I feel so disappointing in myself for not doing surgery in June. I may have been done with this. The W&W protocol I did I should of done chemo as a mop-up and I probably wouldn't be in this situation. I hate thinking this way and I know I shouldn't but I put myself in now such ...
by Stewsbetty
Sun Dec 10, 2017 7:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: very discouraged with this cancer business
Replies: 21
Views: 2927

Re: very discouraged with this cancer business

Hello Since you are msi-H , please explore immunotherapy options . And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada. If not able to get local approval, consider overseas options. Best wishes. Hi Henry, Thanks for the advice. I know it has been a m...
by Stewsbetty
Sun Dec 10, 2017 6:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 30
Views: 3357

Re: Keytruda? What else is new?

I am happy to hear that it worked out so well for you. I just got back my CT scans after 6 months of Opdivo. They are mostly clear and only a lesion is there in lung. Earlier I had met spots in liver , lung and peritoneal region. Cea levels are coming down too. I am so happy for you! Hope is a whol...
by Stewsbetty
Mon Dec 04, 2017 2:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: We may have a mile to go to see effective immunothrarpies to occur for those with MSS
Replies: 12
Views: 1038

Re: We may have a mile to go to see effective immunothrarpies to occur for those with MSS

Before Thanksgiving day, I posted a topic about MGD007. After reading some info I found it might not be as effective as I originally thought. The other medicine CEA-TCB (RO6958688; RG7802) by Roche in phase 1 clinical trial is based on the same principle as MGD007: MGD007 lets T-cells targets cance...
by Stewsbetty
Mon Dec 04, 2017 1:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling hopeless. Para aortic nodes-inoperable?
Replies: 16
Views: 1324

Re: Feeling hopeless. Para aortic nodes-inoperable?

I am sorry you received this news. Pretty tough stuff to deal with. You don’t mention your MSI status in your signature. I am MSI high. This summer I had multiple involved nodes that were growing very quickly. It went from one in April to numerous infected by July. After 2 treatments with folfiri it...
by Stewsbetty
Mon Nov 20, 2017 2:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Nails issues after chemo
Replies: 6
Views: 547

Re: Nails issues after chemo

My nails started to get weak at the end of chemo but the worst was afterwards they didn’t have unusual colours but they were so weak they would peel and break with very little abuse. About 2 months after chemo they were all broken down about 1/2 way down the nail bed. It took about 6 months for all ...
by Stewsbetty
Mon Nov 13, 2017 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 30
Views: 3357

Re: Keytruda? What else is new?

Hello Beth, Wishing you well. I am sure it will help you and Keytruda will smash the disease away. Are you getting the treatment in BC only? What sort of costs are there. Has it been approved in Canada? Thanks. Hi Henry, yes I am getting the treatment in BC. It has not been approved in Canada for M...
by Stewsbetty
Tue Nov 07, 2017 3:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 30
Views: 3357

Re: Keytruda? What else is new?

Thanks all...and good luck! They are testing his MSI. He does have Kras mutation. For those currently on Keytruda: How long have u been on it? Did they give u a length of time you will do it for? How often and how long are treatments? Do you still do regular chemo with it? And, how bad ate side eff...
by Stewsbetty
Tue Nov 07, 2017 3:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Having open colorectal surgery 11/09/2017
Replies: 55
Views: 2734

Re: Having open colorectal surgery 11/09/2017

Hello Alex, Hoping that your surgery goes well. I had my hemi colectomy last year. My dr (just a general surgeon since I live in rural Canada) started with a laparoscopic surgery but did have to do a open me up a bit. The tumour was larger than thought and he needed to open me to get clear margins i...
by Stewsbetty
Tue Nov 07, 2017 3:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: very discouraged with this cancer business
Replies: 21
Views: 2927

Re: very discouraged with this cancer business

Hello Since you are msi-H , please explore immunotherapy options . And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada. If not able to get local approval, consider overseas options. Best wishes. Hi Henry, Thanks for the advice. I know it has been a m...

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