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by tbt4snow
Wed Feb 24, 2021 12:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Constant bowel movement and burning bottom!!!
Replies: 9
Views: 1652

Re: Constant bowel movement and burning bottom!!!

I use:
opium tincture once/day
Cholestyramine twice/ day
That help control my diarrhea most effectively.
Also having a washlet toilet seat help too.
by tbt4snow
Thu Oct 15, 2020 7:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab
Replies: 7
Views: 3439

Re: Regorafenib + Nivolumab

I tried it last November and didn’t work.
by tbt4snow
Fri Jul 10, 2020 7:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Upcoming surgery 3/4 of colon to be removed
Replies: 8
Views: 2263

Re: Upcoming surgery 3/4 of colon to be removed

“ An Extended Right Hemicolectomy took place just over a month ago. 30cm was removed, which comprised some 30 percent of my total colon. Lost 2m Terminal Ileum to neat the Splenic fixture. Probably this was more than you will loose, so unsure where the 3/4 of your colon comes from? “ Do I understand...
by tbt4snow
Sat Mar 21, 2020 9:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NCI stopped recruiting for cancer trails?
Replies: 2
Views: 859

Re: NCI stopped recruiting for cancer trails?

I was approved for a trial at NIH on 3/10 and received a call on 3/11 to be told that NIH suspenses taking new patients for trial due to covid19. We don’t know how long this will last.
by tbt4snow
Wed Aug 21, 2019 5:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 67
Views: 30388

Re: Need Support - Told today I'm on Palliative Care

Hi Nynessie,
You under went a huge surgery, I Hope all is well for you. Let us know how you are doing when you are up to it.
Take care.
by tbt4snow
Wed Aug 21, 2019 5:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone done oxiplatin twice?
Replies: 7
Views: 1431

Re: Anyone done oxiplatin twice?

I did 12 round last year. Recurring after 6 months, surgery then oxi at 60%. Ct scan is clear but my cea go up from 1.9 to 3.5 after 5 treatments. Neuropathy is not as bad this time compared to the last. I do Accupunture one or twice a week and have ice chip in my mouth. Ice pack on my feet during o...
by tbt4snow
Wed Jul 31, 2019 9:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 18652

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

Hi, The application is from BMS. Here is the link for it: http://www.bmspaf.org/Documents/OncologyApplication.pdf I'm not sure about the fee for administering the drug at hospital. I will ask my onc next time I see him. It might vary based on your insurance policy. Before I get approve for the drug,...
by tbt4snow
Thu Jul 25, 2019 11:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 18652

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

Hi, I'm on LTD. I have state health insurance plan. They didn't ask for my tax info, only my health insurance info. It looks like the process go must faster if patient applies directly rather than through doctor's office. Obviously, onc will have to fill out all the info but you can follow up with B...
by tbt4snow
Tue Jul 23, 2019 3:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 18652

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

Hi, I just received a letter from Bristol-Myers Squibb approving my application for free Opdivo (Nivoumab). Huge relieve. I applied it directly to the company and the response time is very quick. After they received completed application, the response time is 24 hours. If the application needs to be...
by tbt4snow
Mon Jul 01, 2019 5:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 67
Views: 30388

Re: Need Support - Told today I'm on Palliative Care

Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :) Great news. You will be in best hands with dr. Cusack. If the surgery is moving forward, you might want to ask to see on...
by tbt4snow
Mon Jun 24, 2019 7:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 18652

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

I informed my onc of the neuropathies problem and he said this can’t go on for long so we have to look at other options. So I showed him your post. He reviewed and agreed we should pursue this option. Thank you so much. This gives me hope.
by tbt4snow
Mon Jun 24, 2019 7:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 18652

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

Thanks Pyro70, I’m MSS. I’m hoping dr will work on insurance coverage soon for nivolumab. My current treatment with folfox and oxaliplatin give me really bad neuropathies right after the 1st treatment so this can’t go far.
by tbt4snow
Mon Jun 24, 2019 9:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 18652

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

All, This is a very early study with only 24 MSS CRC patients but the results are very encouraging. The more I look into it the more promising the results are and I felt the need to share this news. In a nutshell the combination of Stivarga/regorafenib + Nivolumab had an Objective Response rate (tu...
by tbt4snow
Mon Jun 10, 2019 8:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 67
Views: 30388

Re: Need Support - Told today I'm on Palliative Care

(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General. (4) Friday morning I spent quite some tie navigating Mass Gen's phone ...

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