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by henry123
Tue Apr 09, 2019 2:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy Questions
Replies: 5
Views: 439

Re: Immunotherapy Questions

Even my oncologist doesn't want to stop my immunotherapy even though I am approaching 2 year mark as no protocol is in place yet.
by henry123
Fri Apr 05, 2019 11:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Big CEA drop after first chemo!
Replies: 5
Views: 406

Re: Big CEA drop after first chemo!

CEA levels really went crazy and I was considered a goner at that time.
Thank God for Immunotherapy that worked.
Lesson - never give up hope.
by henry123
Thu Mar 21, 2019 4:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bayer found guilty on Roundup
Replies: 8
Views: 478

Re: Bayer found guilty on Roundup

The thing is though I have a nagging doubt about so much pesticide use getting into the food chain . So much genetic modification on the go I guess the full extent of the implications on diet is unknown . I was explaining to my kids that grapes used to have seeds !! So much has changed . I never he...
by henry123
Mon Mar 18, 2019 6:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting immunotherapy next week
Replies: 33
Views: 2428

Re: Starting immunotherapy next week

Hello, could those who have been on keytruda or mono immunotherapies of the like please chime in with your experiences based on the following?: colon cancer was diagnosed about 4 years ago, surgery to remove the mass and total colectomy was performed followed by 6 months of folfox and was NED for l...
by henry123
Mon Mar 11, 2019 1:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting immunotherapy next week
Replies: 33
Views: 2428

Re: Starting immunotherapy next week

Hello fellow Lynchie and opdivoite,
I pray that immunotherapy works out for you. Good to know that my input here is helping someone.
Do consider aspirin also with Nivolumab after talking to your oncologist.
As a side note, Nivolumab has been not too bad so far.
by henry123
Sun Feb 17, 2019 12:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Peri met and liver mets
Replies: 15
Views: 1613

Re: Peri met and liver mets

I had peritoneal cavity Mets alongwith those in liver and lungs.
They are difficult to treat as there's low supply of blood . Hipec is an option . I was not a candidate for that due to my advanced stage.
So we tried immunotherapy.
by henry123
Wed Feb 13, 2019 7:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Canadians and Immunotherapy
Replies: 4
Views: 425

Re: Canadians and Immunotherapy

As far as I know, immunotherapy has yet to be approved in Canada for msi-high CRC cases or regular ones for that matter .
Though oncologists can get approval on case to case basis.
Hopefully, situation will improve soon and immunotherapy drugs such as nivolumab and keytruda are approved in Canada.
by henry123
Tue Feb 12, 2019 12:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 68
Views: 27356

Re: Switching back to Pembro

That seems to be the path that I too will follow.
My family including doctors in the family wants to continue indefinitely whereas oncologist wants to keep options open at 2 year mark.

Let's see how it goes.
by henry123
Mon Feb 11, 2019 12:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 21
Views: 1255

Re: Adjuvant immunotherapy

I am msi-high and Lynch positive. I was diagnosed with stage IV colon cancer.
Immunotherapy in form of Nivolumab Opdivo worked out for me.
I did not respond at all to various chemos including capacitibine, regrofenib and avastin.
by henry123
Mon Feb 04, 2019 11:24 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda
Replies: 21
Views: 2331

Re: Keytruda

Not Keytruda but Nivolumab.
Working well.
by henry123
Sat Jan 26, 2019 11:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What to do after immunotherapy works
Replies: 11
Views: 1219

Re: What to do after immunotherapy works

https://clinicaltrials.gov/ct2/show/NCT03631641

A clinical trial for maintenance/prevention dose of Nivolumab for Lynch Syndrome patients.
They are giving it for 2 years every 3 months.
by henry123
Sun Jan 20, 2019 10:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What to do after immunotherapy works
Replies: 11
Views: 1219

Re: What to do after immunotherapy works

Where has 2 years figure come from?
by henry123
Sun Jan 20, 2019 10:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What to do after immunotherapy works
Replies: 11
Views: 1219

Re: What to do after immunotherapy works

Hello My story is similar to Plastikos except that I am on Nivolumab and not Keytruda. I am approaching 2 year mark and have been NED for almost a year. In my case , intervals between infusions has been increased to 6 weeks from original 2 weeks. But what is to be done after 2 years is still up in t...
by henry123
Mon Jan 14, 2019 1:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.
Replies: 31
Views: 7872

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

I was 35 at the time of stage IV DX with a 20 month old daughter. At the time I managed to stay positive, yet deep down expected the worst. Next week will mark 7 years since diagnosis, over 6 of which have been NED. My doctors now tell me I am most likely cured, but I still remain vigilant. We adde...

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