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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: 46
Views: 11110

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: 6
Views: 668

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: 32
Views: 3835

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: 32
Views: 3835

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: 32
Views: 3835

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: 46
Views: 11110

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: 32
Views: 3835

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: 32
Views: 3835

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: 32
Views: 3835

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: 46
Views: 11110

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 ...
by tbt4snow
Fri May 17, 2019 5:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 33866

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Boxhill, I had MRI done today. I will know in couple of days if it pickups those plagues. If it does then there will be biopsy to get tumor tissues for vaccines. If not, I will move forward with Folfox + Ketruda. Boswind, I hope you get good results with this new regime. I guess we have to keep tryi...
by tbt4snow
Wed May 15, 2019 7:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 33866

Re: Keytruda....Working for MSS....Mutation Burden is the Key

During the surgery, the surgeon saw a lot of black plaques which are .5 to 1mm in size that spreads out in my ileum thus not resectable and pathology proved they are cancerous. The ct scan after surgery did not show these plaques and my current cea is 2.1. It is a matter of time these plagues will g...
by tbt4snow
Wed May 15, 2019 12:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 33866

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Hi all, There is trial for chemo immunotherapy for crc: http://clinicaltrials.gov/show/NCT02375672 I’m not qualified to participate due to my disease is not measurable. Both onc at MGH and Dana suggested this treatment. I had 12 sessions of Folfox + Avastin last year. This year I have 4 sessions of ...
by tbt4snow
Tue May 14, 2019 10:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 33866

Re: Keytruda....Working for MSS....Mutation Burden is the Key

I just wonder if anyone has done both Folfox and Ketruda at the same time and how bad is the side effects? I have my crs/hipec done on April 3rd. The onset pci was 16. After the surgery, PCI is 1, part of the ileum wasn’t respectable. My onc wants me to start Folfox + Ketruda on 5/29. Then Folfox ev...
by tbt4snow
Fri May 10, 2019 1:36 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: 1972

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

Hi Paola, I'm so sorry to hear about the unexpected during your surgery. I pray for you to get good response with chemo treatment so you can go back to the OR. From my original tumor, I'm MSS with TMB 16 which my oncologist said I'm not qualified for a clinical trial that takes patients with TMB of ...

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