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by henry123
Tue Jun 04, 2019 6:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dr Henry Lynch
Replies: 3
Views: 817

Re: Dr Henry Lynch

Dr. Lynch
Farewell and rest in peace.
Thanks for your efforts which may save many.
by henry123
Sat Jun 01, 2019 12:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Things Not to Say and the Responses I want to Make (Rant)
Replies: 128
Views: 33152

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

I don't think most people can understand the amount of suffering this disease can cause. Physically, emotionally, relationship wise, social status wise, financially and so on. My wife and I have cried over me eating one morsel of rice while on xeloda. My body refused to take any food. I would hope t...
by henry123
Tue May 07, 2019 5:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possibly still NED...our story to date
Replies: 124
Views: 19208

Re: Possibly still NED...our story to date

mpbser wrote:Thanks for asking, punky. He's still a bit shocked, as am I. The PET results seemed to be so promising. What a let down.


This disease is such.
Take things in your stride.
Best wishes.
by henry123
Tue May 07, 2019 5:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?
Replies: 16
Views: 2683

Re: Any idea the cost for CRS/HIPEC at MSK if insurance not cover out of network?

I had got an estimate of around U$150,000 from Dr. S and U$7,500 (just surgery) from Tata Memorial centre in India. But keep in mind that there are other costs involved too besides surgery.
I did not undergo HIPEC treatment as disease had spread to lungs too.
by henry123
Tue May 07, 2019 5:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 to NED- Please tell us
Replies: 54
Views: 12270

Re: Stage 4 to NED- Please tell us

Hello. My mom was diagnosed at Stage 4 with a liver met in May 2011. After a liver resection and chemo she was NED for almost a year. It returned. Another liver resection and more chemo. Several more bouts of NED and it returning to the liver, more chemo, an ablation in October 2015. Guess what? To...
by henry123
Tue May 07, 2019 5:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 to NED- Please tell us
Replies: 54
Views: 12270

Re: Stage 4 to NED- Please tell us

I was put on palliative care in January 2017 and was told by my oncologist that 90% I have 3 -6 months. I asked about 10% . What do they do different. He said stop joking, we don't know about that but some survive for whatever reason. I was worried sick about my kids, wife , old parents . Many a tim...
by henry123
Sat May 04, 2019 1:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 24
Views: 4091

Re: Adjuvant immunotherapy

I really wish that cancer treatments such as immunotherapies would be granted to all viable candidates, especially since it gives a relatively good chance of response and durability. It's a shame that cancer patients who already have enough to worry about would also have to worry about footing the ...
by henry123
Thu May 02, 2019 10:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: very discouraged with this cancer business
Replies: 25
Views: 6887

Re: very discouraged with this cancer business

I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations. Not ...
by henry123
Thu May 02, 2019 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 24
Views: 4091

Re: Adjuvant immunotherapy

It is good that you got Merck to cover it.
Anyone have experience in Canada with Compassionate care from BMS , manufacturer of Opdivo .
by henry123
Wed May 01, 2019 1:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Finally reached the 'forgot I had cancer' spot!
Replies: 16
Views: 2718

Re: Finally reached the 'forgot I had cancer' spot!

Congratulations.
It is so inspiring to read stories such as yours. Keep smiling.
by henry123
Wed May 01, 2019 12:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 81
Views: 42976

Re: Switching back to Pembro

Hi all. Been gone for a while. Chemo took it's toll. As an update I have finished 4 rounds of chemo after a single dose of Keytruda in early December. Latest PET-CT showed almost all tumors (liver, nodes) have shrunk and are metabolically inactive save for one node (peripancreatic) which still has ...
by henry123
Wed May 01, 2019 11:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 81
Views: 42976

Re: Switching back to Pembro

As I approach 2 year mark, I took a second opinion from another Medical oncologist . He has strongly recommended continuing with the medicine at current dose. As per him , only thing we are sure of is that we cannot see the disease in CT scans or bloodwork (CEA levels) but we can not be sure if it i...
by henry123
Tue Apr 09, 2019 2:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy Questions
Replies: 5
Views: 1032

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: 907

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.

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