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by henry123
Tue Jan 23, 2018 10:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update: It's just a matter of time
Replies: 15
Views: 2673

Re: Update: It's just a matter of time

So sorry for your family.

If you feel like it , please play the following video a few times every day for her.

https://m.youtube.com/watch?t=30s&v=nHvoI56jEus
by henry123
Mon Jan 22, 2018 11:34 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda for stage 4 colorectal cancer with low mutation ma1-L
Replies: 3
Views: 727

Re: Keytruda for stage 4 colorectal cancer with low mutation ma1-L

My wife has stage 4 colorectal cancer and has started using Keytruda with chemo tablet Her readings are low mutation ms1-L Has anyone had success and how do you know it’s working besides a scan only done 3 sessions Darryl Best wishes. My oncologist monitored it after 3 months ( 6 cycles ) . I think...
by henry123
Sun Jan 14, 2018 11:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tribute to my dear friend Anne - aka BeansMama
Replies: 39
Views: 5864

Re: Tribute to my dear friend Anne - aka BeansMama

So sorry to hear about BeansMama.
She will be missed by all of us.
Deepest condolences to her friends and family.
by henry123
Fri Jan 12, 2018 2:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Maintenance Chemo questions
Replies: 9
Views: 1349

Re: Maintenance Chemo questions

Hello nobuttgirl What is his msi / mss status? If msi-high then I am sure that you are aware that immunotherapy is a good option. For my immunotherapy, Onco had indicated possibility of maintenance dose after a couple of years on 3mg/kg every 15 days. This was because Lynch can come back at quite a ...
by henry123
Wed Jan 10, 2018 3:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Age 30 (M) Recently Diagnosed, Family History
Replies: 48
Views: 6986

Re: Age 30 (M) Recently Diagnosed, Family History

Just a quick one, got my pathology results today. I had a complete pathological response to neoadjuvant therapy. No cancer traceable in the 15 lymph nodes and tissue removed. They believe its reasonable to think I was closer to stage 2 than 3. Chemo may not be necessary and reversal of stoma soon. ...
by henry123
Thu Jan 04, 2018 3:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question for Canadians re genomic testing
Replies: 20
Views: 1963

Re: Question for Canadians re genomic testing

Thank you for your responses. We're in Ontario. So it sounds like we'll have to fight for it. And if I understand correctly, we'll definitely need this knowledge for applying to clinical trials. Hurry up, private sector testing labs! Thanks again. You should definitely get yourself tested for msi a...
by henry123
Wed Jan 03, 2018 10:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 5603

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

I have a question as to why are patients on Opdivo told to avoid sunlight exposure. Any new update on Keytruda or Opdivo? I was on FOLFOX only, butt I too was told to avoid the sun. If I remember correctly it makes you more susceptible to sunburns. Are you just taking Opdivo alone or in conjunction...
by henry123
Wed Jan 03, 2018 4:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 5603

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

Robino1 wrote:What an amazing drop in your CEA number!!!

Sounds like Opdivo is working splendidly for you :D

Thanks Robino
by henry123
Wed Jan 03, 2018 4:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 16119

Re: Keytruda? What else is new?

Hello friends, Just got my CEA numbers in . They are down to 3.6 . Oncologist is satisfied with the progress. Given where you came from, I'd say that's an understatement. You are right ,Mike. I think everyone including me and doctors are a bit scared to start celebrating too early. Thanks for your ...
by henry123
Wed Jan 03, 2018 11:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 16119

Re: Keytruda? What else is new?

Hello friends,
Just got my CEA numbers in .
They are down to 3.6 .
Oncologist is satisfied with the progress.
by henry123
Wed Jan 03, 2018 12:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 5603

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

Hello
My latest cea value is 3.6
Almost normal.
Hopefully under 3 by next month .
Fingers crossed.
by henry123
Mon Jan 01, 2018 6:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda and dry mouth
Replies: 5
Views: 1441

Re: Keytruda and dry mouth

Yes .

Also very dry feet (not HFS), sneezing, runny nose and frequent BM. Applying regular moisturiser to feet .

I say to myself (visualise )with every BM, sneeze , phlegm that it is tumors being flushed out of my body. :idea:

PS : I am on Opdivo.
by henry123
Wed Dec 27, 2017 7:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lynch Syndrome
Replies: 7
Views: 1057

Re: Lynch Syndrome

Stay strong and stoically accept whatever fate you have been dealt either ways . If you don't have Lynch , great. Just try to improve your lifestyle and use it as a wakeup call. If you know you have Lynch , you can be on watch out for it. Also keep your insurance upto date before you test. Lastly, L...
by henry123
Tue Dec 26, 2017 5:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bowel Perforation -Avastin
Replies: 3
Views: 602

Re: Bowel Perforation -Avastin

I had obstruction while on Avastin. I was unable to pass stools or gas. Surgeons did not agree to perform surgery due to Avastin ( as they explained that bleeding would not stop) . It was conservatively managed and thankfully, I was able to pass stools after 4 5 days. Not the most pleasant experience.
by henry123
Fri Dec 22, 2017 4:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IIA: Chemo or not?
Replies: 29
Views: 3067

Re: Stage IIA: Chemo or not?

My oncologist talked to others about Lynch, my situation, etc. at the ASCO meeting where the 3 vs 6 mo. study was presented and they all agreed that Folfox was the way to go, mostly because I still would benefit from the oxaliplatin (4%? 2%? more reduction; no way to really tell) and it does work b...

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