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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: 10
Views: 781

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: 10
Views: 781

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: 217688

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: 2124

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: 2086

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: 2086

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: 22603

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: 1129

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: 2183

Re: Clear scans!

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

Cynthia
by Jack&KatiesMommy
Mon Feb 24, 2020 3:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 73
Views: 10423

Re: Cea on the rise

Yikes....I understand how upset you both must be...it sounds like some mistakes were made. However, you may want to think long and hard before removing the HAI pump. Maybe you could consult with MSK before you make a decision. It sounds like your husband has a high tumor burden in his liver....and t...
by Jack&KatiesMommy
Wed Feb 12, 2020 8:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery on main valve?
Replies: 3
Views: 760

Re: Surgery on main valve?

Dr. Solomon (an interventional radiologist) at Memorial Sloan Kettering did an Irreversible electroporation (nonthermal ablative technology that uses high-voltage, low-energy DC current pulses to induce cell death) on a tumor in my liver that was too close to the portal vein to attempt standard abla...
by Jack&KatiesMommy
Mon Jan 06, 2020 11:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: RFA -Lung Tumour
Replies: 14
Views: 2110

Re: RFA -Lung Tumour

It may sound funny, but I am not sure how many tumors I had RFA'd. Sometimes, it was questionable whether we were ablating a new tumor or re-ablating one that had been done before. I would guess that I had 8 or so distinct tumors that were ablated over the years.

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