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by Jack&KatiesMommy
Sat Sep 12, 2020 9:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone on Stivagra plus Opdivo?
Replies: 1
Views: 326

Re: Anyone on Stivagra plus Opdivo?

Good to see you back, Butt! I am not on Stiverga or Opdivo....but I have been on Keytruda for over two years. My oncologist told me that Keytruda and Optivo act very similarly and produce similar side effects. I have had very few side effects at all. I do sometimes have fatigue...and twice int he tw...
by Jack&KatiesMommy
Mon Aug 17, 2020 9:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: another HAI pump question and a short rant...
Replies: 15
Views: 2293

Re: another HAI pump question and a short rant...

I contacted Dr. Kemeny's office...told them my story and sent all fo my records in to her for review and consideration. Several weeks later they called and said that Dr. Kemeny had agreed to take my case and that I needed to come in for an appointment about a week later. I flew in to NYC and met wit...
by Jack&KatiesMommy
Thu Aug 13, 2020 8:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Remission!?!
Replies: 11
Views: 2305

Re: Remission!?!

This is such great news!!!!!!! I am so happy to read your post! Keep us updated as you move toward a long life!!!

Cynthia
by Jack&KatiesMommy
Mon Aug 10, 2020 8:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: another HAI pump question and a short rant...
Replies: 15
Views: 2293

Re: another HAI pump question and a short rant...

Gina is right. I had dozens and dozens of tumors in every section of my liver. I got my HAI pump at MSK after my local oncologist said chemo was my only option. Within 6 months my liver was clear enough to do a resection of one side (the other side was clear) and 6 months later my liver was clear......
by Jack&KatiesMommy
Mon Jun 29, 2020 10:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!
Replies: 12
Views: 1840

Re: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!

This is great news. My Onc mentioned something about FDA approved something, not sure if it was Keytruda, but will talk to him. My TMB is 8, but I want him to do a new test from my last surgery, will talk to him about it. So when you say your Cancer free, are you not doing any regimen at the moment...
by Jack&KatiesMommy
Mon Jun 29, 2020 9:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!
Replies: 12
Views: 1840

FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!

The FDA has approved the immunotherapy Keytruda for solid tumors with a tumor mutation burden of 10 or greater. This means that CRC patients with MSS tumors (with TMB of 10+) are able to get insurance coverage for the use of Keytruda! My oncologist had to petition and appeal to get my insurance to c...
by Jack&KatiesMommy
Sun Jun 07, 2020 6:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 625
Views: 219223

Re: TIL Immunotherapy at NCI

I was MSS too, Claudine! Don't brush it off. When "they" say immunotherapy doesn't work for MSS, they are talking about infused agents like Keytruda, and Yervoy, etc. Celine I am MSS with a moderate tumor burden identified in my tumor. My local oncologist had seen some new research that i...
by Jack&KatiesMommy
Wed Jun 03, 2020 11:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hi again , hoping for opinions
Replies: 18
Views: 2493

Re: Hi again , hoping for opinions

Moni: I would get a second opinion on the HAI pump if possible. I was told that I had no other options and that it would be chemo for the remaining 12-22 months that I had left. I did well on chemo and got a second opinion from an aggressive liver surgeon at MD Anderson. He said I was ready for a li...
by Jack&KatiesMommy
Mon Jun 01, 2020 6:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on my situation and advice (Maintenance Chemo)
Replies: 21
Views: 2457

Re: Update on my situation and advice (Maintenance Chemo)

Claudine & Rik:
I have the KRAS mutation as well as 10 other mutations in my cancer. They believe this is why immunotherapy is working for me even though I am MSS. My cancer is considered to have an intermediate tumor burden and it is thought that this is why Keytruda is working for me.
by Jack&KatiesMommy
Sat May 30, 2020 8:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on my situation and advice (Maintenance Chemo)
Replies: 21
Views: 2457

Re: Update on my situation and advice

Rikki I was on Irinotecan + Xeloda for 2 1/2 years then just Xeloda for 2 years before my cancer couldn’t be controlled with maintenance chemo in this way (I also did multiple rfa’s on lung Mets and had surgery to remove affected lymph nodes.). So the chemo got me 4 1/2 years at which time my oncolo...
by Jack&KatiesMommy
Tue May 26, 2020 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please help, input needed
Replies: 82
Views: 23592

Re: Please help, input needed

I am so sorry you are going throguh this. I wish there was something that I could od to help you get through this pain and agony. All that I can do is share my experience to give you some hope. I have been fighting this battle for 9 years this August. I am in a really good place now (I am NED as far...
by Jack&KatiesMommy
Tue May 05, 2020 9:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSK friendly lodging in NYC
Replies: 8
Views: 1338

Re: MSK friendly lodging in NYC

I always stay at the Pod (on 55th). It is walking distance to Dr. Kemeny's on 53rd and you can take a shuttle from the MSK 53rd office to the hospital. Very convenient. It is always one of the lowest priced options. However, it is very very basic. Think dorm room type accommodations. Very clean but ...
by Jack&KatiesMommy
Tue Mar 17, 2020 11:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clear scans!
Replies: 20
Views: 2487

Re: Clear scans!

Such wonderful news!!!!!! So happy for you!!!!

Cynthia

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