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by henry123
Thu Dec 21, 2017 10:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Things Not to Say and the Responses I want to Make (Rant)
Replies: 115
Views: 22357

Re: Things Not to Say and the Responses I want to Make (Rant)

I sort of agree with both sides of opinion. During past two years, I have lost my cool with well intentioned family and friends for unsolicited constant advise or triviliazing suffering especially while handling chemo side effects. I have also got upset with family members who did not cooperate with...
by henry123
Tue Dec 19, 2017 5:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genetic testing (Lynch syndrome) questions
Replies: 6
Views: 783

Re: Genetic testing (Lynch syndrome) questions

Thanks for your advise . Have asked for test for my siblings and Aunt.

Also

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901118/

Interesting article on how and why 5FU does not work for Lynch and msi High CRC and why immunotherapy works.
by henry123
Sun Dec 17, 2017 6:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genetic testing (Lynch syndrome) questions
Replies: 6
Views: 783

Re: Genetic testing (Lynch syndrome) questions

Hello I am Lynch positive. I have been advised by Genetics Counsellor to get my siblings ( who are disease free so far) tested for Lynch. They are married with kids and leading normal lives with the usual ups and downs. They are scared of reality and feel that if they test positive they will worry t...
by henry123
Sat Dec 16, 2017 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10398

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

mpbser wrote:I haven't heard that about milk products. Do you know why they should be avoided?


As immunity is compromised I used to get frequent stomach infections .
So I was told by my gastrologist to avoid raw food and milk .
It was ok to have yogurts.
Anyways , later I have become vegan.
by henry123
Fri Dec 15, 2017 5:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Age 30 (M) Recently Diagnosed, Family History
Replies: 48
Views: 6676

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

Sealdog, Best of luck for your surgery. I also have Lynch. Genetics counsellor told me we ( those with Lynch) all probably have a common ancestor somewhere up our family tree. Have you discussed immunotherapy with your oncologist. Awareness / acceptance of immunotherapy is still low especially in On...
by henry123
Wed Dec 13, 2017 12:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10398

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

And don't forget Oxi may not be as bad as he's dreading. While I did have some temporary effects during treatment, and some mild numbness of fingertips and crampy toes from appx 2- 5 months after treatment, I did complete the full course of Oxi with no permanant side effects. Agree. Oxaliplatin is ...
by henry123
Wed Dec 13, 2017 7:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS and Nivolumab (Opdivo)
Replies: 9
Views: 1340

Re: MSS and Nivolumab (Opdivo)

Steph20021, I am msi-h and am just learning about this drug . But I think that some MSS patients do respond when it is taken in combination with other drugs. I can only share my experiences. There used to be a lot of bodyache (bones?) especially in legs and back in the first few cycles during infusi...
by henry123
Mon Dec 11, 2017 10:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy
Replies: 16
Views: 3539

Re: Immunotherapy

Hi, My husband and I just recently found out that the FOLFIRI/Erbitux chemo combination he began in Oct. 2016 is no longer effective. His doctor at Kaiser Permanente would like to switch him to FOLFOX/Erbitux. We went to get a second opinion at UCLA medical center and the oncologist there (Dr. Rose...
by henry123
Sun Dec 10, 2017 11:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV 2 years later... keeping the HOPE
Replies: 5
Views: 1004

Re: Stage IV 2 years later... keeping the HOPE

Stay the course. Enjoy every moment.

Miracles do happen. I believe that now.

Best wishes.
by henry123
Sun Dec 10, 2017 11:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reoccuring Digestive issues
Replies: 13
Views: 1355

Re: Reoccuring Digestive issues

Have you considered dairy free vegan diet?
by henry123
Sun Dec 10, 2017 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Peri mets
Replies: 7
Views: 1204

Re: Peri mets

Hi Peritoneal is like layers and layers of fishnet or very fine filter paper. It's purpose is to act as barrier between various internal organs. Peri mets are difficult to reach by conventional chemo so HIPEC is reqd. In my case, HIPEC was not an option due to liver and lung mets. These 2 mets had t...
by henry123
Sat Dec 09, 2017 6:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 15672

Re: Keytruda? What else is new?

Hey Henry, I suspect you are at the head of the pack on this, a forerunner, and you will be sharing the answers you are looking for with US soon enough. So cool Opdivo is working for you. I’m MSS but applying to a combination trial with Opdivo in Toronto. I’m looking for info on how other MSS folks...
by henry123
Sat Dec 09, 2017 5:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tom marsilje
Replies: 40
Views: 4771

Re: Tom marsilje

RIP Tom Marsilje.
Your posts gave me positivity to handle immunotherapy when I had all but given up.
by henry123
Fri Dec 08, 2017 8:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keto diet?
Replies: 8
Views: 1506

Re: Keto diet?

Read The China Study by Dr. T Campbell. Listen to Dr. Mcdougall lectures on YouTube.
Keto diet is probably a very bad idea for cancer.
As others have suggested, vegan diets may be best for us.
by henry123
Fri Dec 08, 2017 8:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 15672

Re: Keytruda? What else is new?

Robino1 wrote:I don't have an answer for you but I did want to congratulate you on the impressive drop in your CEA numbers!! Sounds like Opdivo is working REALLY well for you! :)



Thanks, Robino. Pray that things work out for everyone.

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