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by henry123
Fri Jun 28, 2019 5:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda Side Effects: bad joint pain
Replies: 7
Views: 582

Re: Keytruda Side Effects: bad joint pain

Hi ,
Sorry to hear about your complications.

While I do experience pain for some time after infusions, nothing like what you're describing.
by henry123
Thu Jun 13, 2019 3:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Probiotics while on Immunotherapy. Good or bad?
Replies: 4
Views: 348

Re: Probiotics while on Immunotherapy. Good or bad?

Hi all. Title explains it all. I have been seeing conflicting data (well not super hard evidence since they aren’t from trials). Any opinions on this? I used to take probiotic pills while on Keytruda but stopped them now. My response on Keytruda has been splendid. Now just loading up on “natural” p...
by henry123
Thu Jun 13, 2019 3:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 72
Views: 30304

Re: Switching back to Pembro

Ok. My oncologist after much discussions have decided to continue with 6-week infusions of Nivolumab for foreseeable future . I was hoping that the medicine would be stopped at this stage but I guess the doctor knows the best. Also infusion at 6 week interval is not that bad as long as the disease i...
by henry123
Sat Jun 08, 2019 10:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Visualization and Other non-medical stuff
Replies: 9
Views: 440

Re: Visualization and Other non-medical stuff

I used to imagine immunotherapy eating away tumors like Pacman video game.
by henry123
Sat Jun 08, 2019 10:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tooth pain-need to see dentist. Will this impact Immunotherapy (Keytruda)?
Replies: 7
Views: 337

Re: Tooth pain-need to see dentist. Will this impact Immunotherapy (Keytruda)?

Is that the same for folfox + Avastin? I could probably just Google that but you guys are such a fountain of knowledge! Avastin prevents formation of new blood vessels so any surgery that involves incisions (as most of them do) can result in non stop bleeding. I had blockage in stomach while on Ava...
by henry123
Sat Jun 08, 2019 8:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tooth pain-need to see dentist. Will this impact Immunotherapy (Keytruda)?
Replies: 7
Views: 337

Re: Tooth pain-need to see dentist. Will this impact Immunotherapy (Keytruda)?

Absolutely. Please do NOT get any major or minor surgery done while on immunotherapy. You never know how your immune system will respond. Patients have been lost just due to surgeries while on immunotherapy. Please treat it most seriously. Most regular doctors are not aware of this and you have to t...
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: 453

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: 27765

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: 14793

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: 1842

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: 9254

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: 9254

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: 2641

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: 5590

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 ...

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