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by henry123
Sun Feb 25, 2018 11:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA increasing rapidly
Replies: 4
Views: 815

Re: CEA increasing rapidly

Emzee My cea went crazy from around 2 to almost 30, 000 within 7- 8 months. It was collaborated by pet/ ct scans showing rapid growth of mets in lung , peritoneal region and livers. Oncologist had never seen such aggressive growth of cea. No chemo was working . Then it was revealed that I am Lynch w...
by henry123
Thu Feb 22, 2018 12:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 3422

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

sharijohn wrote:Hello! I am interested in a nivolumab trial for my mom. What is your MSI status? Are you non



Hi
I am msi-high as well as Lynch positive.
Best of luck with finding a trial for your mom.
by henry123
Thu Feb 22, 2018 12:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Stage IV currently in NEDville? Please share any advice or tips? P
Replies: 67
Views: 10083

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

I don't where I am but like to believe I am there in NEDville. A few of things I am doing 1. About an hour of yoga everyday. 2. Herbal teas 3. About a litre of veggie juice mainly carrots, beetroots, pomegranate, greens , ginger and fresh turmeric sprinkled with black pepper. 4. 20 30 apricot kernel...
by henry123
Sun Feb 18, 2018 8:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mr Ziggy has passed away
Replies: 17
Views: 2645

Re: Mr Ziggy has passed away

Mrs Ziggy
Deepest Condolences.
May God give you and your family strength to accept what is God's will.
by henry123
Tue Feb 13, 2018 7:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Just got real, y'all
Replies: 29
Views: 3952

Re: Just got real, y'all

Best advise drink upto 4 or 5 liters of water.
Stay away from raw foods and dairy products as easy to get upset stomach.
If you have any irregular heart beat, take it seriously and report to your doctor immediately. 5FU can cause heart related issues.
Best of luck.
by henry123
Fri Feb 09, 2018 12:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: GREAT news to share!
Replies: 11
Views: 1404

Re: GREAT news to share!

Best wishes to your husband.
He will be alright soon.
by henry123
Fri Feb 09, 2018 12:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feel I need to give up before starting
Replies: 7
Views: 1030

Re: Feel I need to give up before starting

A few years ago in my late 20s , I was feeling unwell a lot . There were lot of strange symptoms like craving for cold foods, flatulence and rotten meat taste in my mouth. No one including family would really listen or understand. One family physician even put a remark about being depressed and delu...
by henry123
Wed Feb 07, 2018 5:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 8339

Re: Keytruda? What else is new?

Another article on duration of immunotherapy after good response http://cancergrace.org/cancer-101/2016/09/14/io-duration/ Hi Henry. First of all congrats on your results on Opdivo. I have been on Keytruda for a year and I am doing well save for the toll it is taking financially. Where I live the d...
by henry123
Wed Feb 07, 2018 5:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 3 years from diagnosis, 1 year on Keytruda
Replies: 13
Views: 1312

Re: 3 years from diagnosis, 1 year on Keytruda

Congratulations on achieving NED.
Are you continuing with Keytruda for now?
Any discussion with your medical oncologist on that front.
by henry123
Tue Feb 06, 2018 5:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Polyps at (relatively) young age...wonderibg how to advocate
Replies: 11
Views: 2713

Re: Polyps at (relatively) young age...wonderibg how to advocate

I did the MyRisk test - diagnosed me with Lynch syndrome and tumor pathology confirmed the mutation. With Lynch, the standard of care is annual colonoscopies- if I would have done this early on, I likely would have never gotten rectal cancer since the polyp would have been caught. For example, I ju...
by henry123
Sat Feb 03, 2018 12:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 8339

Re: Keytruda? What else is new?

Another article on duration of immunotherapy after good response


http://cancergrace.org/cancer-101/2016/ ... -duration/
by henry123
Fri Feb 02, 2018 6:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 47
Views: 8339

Re: Keytruda? What else is new?

Hi Cea numbers are 2.3. Fingers crossed. Also I was reading posts by a user of opdivo on cancercompass site . It seems that after 2.5 years and NED status, duration of infusion was increased to 4 weeks and later 6 and 8 weeks. It was stopped after 1 year. Lung cancer patient. https://www.cancercompa...
by henry123
Thu Feb 01, 2018 12:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Well, hell.
Replies: 25
Views: 2913

Re: Well, hell.

I so totally agree. I am almost fine now physically but have a hard time mentally getting back to my work routine. After two years of roller coaster medical ride, I am still to be my original hardworking self. It is difficult explaining situation to myself let alone others including kids and family....
by henry123
Thu Feb 01, 2018 12:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adhesions
Replies: 15
Views: 2194

Re: Adhesions

I had lot of adhesions and obstruction once.
Could not be operated on as I was on Avastin at that time.
It was conservatively managed as that was only choice . Thankfully , it worked out .

Don't know status of adhesions now. Will ask after next CT.

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