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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: 9
Views: 508

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: 261

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: 67
Views: 25884

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: 14
Views: 648

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: 16
Views: 1170

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: 1020

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: 1020

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: 1020

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: 6096

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...
by henry123
Mon Jan 14, 2019 1:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 67
Views: 25884

Re: Switching back to Pembro

Hi, I have been NED since June 2018 . I am Lynch positive. Two thoughts regarding future course of action are going on by my oncologists . 1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity. 2. Continue maintenance...
by henry123
Mon Jan 14, 2019 1:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 67
Views: 25884

Re: Switching back to Pembro

This is such great news for you! I am so happy to read this. It’s been along time since I’ve been on this site but I read occasionally. As with everyone with this diagnosis or a family member who has colon cancer, it’s been a very tough year. My mom did not respond well to chemo, in fact it almost ...
by henry123
Fri Jan 11, 2019 10:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 67
Views: 25884

Re: Switching back to Pembro

Hi, I have been NED since June 2018 . I am Lynch positive. Two thoughts regarding future course of action are going on by my oncologists . 1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity. 2. Continue maintenance ...
by henry123
Sat Dec 22, 2018 8:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Article On CRC MSS and Tumor Mutation Burden and response to Immunotherapy
Replies: 5
Views: 1141

Re: Article On CRC MSS and Tumor Mutation Burden and response to Immunotherapy

That's good news if a new biomarker is found that indicates potentially immunotherapy could work for some CRC patients.
by henry123
Wed Dec 12, 2018 5:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 67
Views: 25884

Re: Switching back to Pembro

Plastikos, Regarding removal of stent. I assume it involves surgery to remove it. If so , as per my understanding surgery of any type should be avoided if you are undergoing immunotherapy. This is because surgery can cause autoimmune reaction by the immune system. I was forbidden explicitly even the...
by henry123
Tue Dec 11, 2018 9:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: nivolumab + ipilimumab + radiation in mss and MSI high
Replies: 6
Views: 1447

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Thanks Herry123. I am apparently starting on the 31st, barring any unexpected occurrences. Would love to hear from folks who have been involved with this particula combination of immunotherapy drugs, with or without radiation—or who know more about this trial or other similar trials. Seems promisin...

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