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by Jack&KatiesMommy
Thu Dec 20, 2018 1:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Article On CRC MSS and Tumor Mutation Burden and response to Immunotherapy
Replies: 5
Views: 1534

Article On CRC MSS and Tumor Mutation Burden and response to Immunotherapy

Here is a link to a Foundation One Article that is, in part, based upon the results of my case and relates specifically to MSS TMB and Colorectal Cancer's response to immunotherapy:

https://www.foundationmedicine.com/blog ... tal-cancer
by Jack&KatiesMommy
Thu Dec 20, 2018 1:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 37373

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

Here is a link to a Foundation One Article that is , in part, based upon the results of my case and relates specifically to MSS TMB and Colorectal Cancer's response to immunotherapy:

https://www.foundationmedicine.com/blog ... tal-cancer
by Jack&KatiesMommy
Thu Dec 20, 2018 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 37373

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

chadwick1 My oncology team prepared an appeal to my insurance company and to Keytruda's manufacturer explaining the new evidence that there may be benefit to MSS colon cancer patients that have a high mutation burden. They worked with Foundation One (who had amassed a lot of data based on their test...
by Jack&KatiesMommy
Wed Dec 19, 2018 1:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 301
Views: 50300

Re: My CRC with liver mets journey

I would try to get your consult with MSK sooner rather than later. Sometimes you can be on chemo too long...and the liver is too stressed to go the HAI route. Please, contact MSK now.
by Jack&KatiesMommy
Wed Dec 19, 2018 1:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Calling all angels for a Christmas miracle
Replies: 12
Views: 2296

Re: Calling all angels for a Christmas miracle

I had numerous tumors (dozens) throughout my liver. I had a failed liver resection at MD And3erson (where I had my second opinion) because the liver surgeon opened me up and found dozens and dozens of tumors that were not visible on the C Scans I'd had. He told me that there was nothing that he coul...
by Jack&KatiesMommy
Tue Dec 18, 2018 2:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question about platelets
Replies: 6
Views: 1502

Re: Question about platelets

My platelets are now always low....I have had chemo when they were in the high 70's and low 80's on multiple occasions.
by Jack&KatiesMommy
Tue Dec 18, 2018 11:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: nivolumab + ipilimumab + radiation in mss and MSI high
Replies: 6
Views: 1899

Re: nivolumab + ipilimumab + radiation in mss and MSI high

PeterG: Do you know what your mutation burden is? Did you have Foundation One testing on your tumor? If you have (now--because years of treatment can cause our cancer to mutate) a moderate mutation burden (12+) then Keytruda may work on you as it does for MSI high patients. Foundation One has a blog...
by Jack&KatiesMommy
Tue Dec 18, 2018 10:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone deal with lymphedema after colon cancer??
Replies: 7
Views: 2418

Re: Anyone deal with lymphedema after colon cancer??

Lydia: Do you know if you are MSI or MSS? I would definitely be pushing for Foundation One Testing. If you look at the blog on their website--the Post about MSS Colon Cancer and people in that category responding if they have 12+ mutations (My case helped them make this connection)....they are findi...
by Jack&KatiesMommy
Tue Dec 18, 2018 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How did you know it was the end?
Replies: 8
Views: 2715

Re: How did you know it was the end?

Is there any chance they could try Keytruda? I am MSS and because I had 12 mutations (most of which probably occurred from all of the treatments that I have had over the last 7 years). I had response within a couple of weeks. Just wondering if you could talk to his doctor to see if this could be an ...
by Jack&KatiesMommy
Fri Nov 16, 2018 11:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 37373

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

Hi Cyn: SOOOO happy for you and I will pray that it works for you as wella s it has for so many others! I have found Keytruda to be a breeze! (after having gone through Folfox, Irinotecean, Avastin, Xeloda)...Keytruda is wonderful. It is only a 30 minute infusion. The one and only side effect that I...
by Jack&KatiesMommy
Tue Oct 30, 2018 9:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 73
Views: 14579

Re: Hospitals that install HAI pump?

Dr Kemeny at MSKCC only requires that you travel to MSK every 4-6 weeks. You can have your pump filled locally in between. Please follow up with MSK as they are the leader in this treatment and I highly recommend that you seek treatment there if at all possible.
Cynthia
by Jack&KatiesMommy
Wed Oct 10, 2018 9:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 to NED- Please tell us
Replies: 54
Views: 11048

Re: Stage 4 to NED- Please tell us

I have been at this for over seven year. I was a BAD stage IV (my CEA was over 2,600 when diagnosed in 2011) and my liver was FULL of cancer in every lobe and there were suspicious nodules in my lungs. My children were 4 and 8...and I was the only working parent...who also supported my Mom. I got lo...
by Jack&KatiesMommy
Fri Oct 05, 2018 2:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 37373

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

Call Foundation One. They are the ones amassing all of the data on this. They are the ones who alerted my oncologist in Ohio to this. You can ask your oncologist to call mine as I am certain he will talk to him about the success he has had with Keytruda and MSS at the Ohio State University Cancer Ce...
by Jack&KatiesMommy
Wed Oct 03, 2018 10:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Baseline CEA correlation with metastasis and survival??
Replies: 12
Views: 1878

Re: Baseline CEA correlation with metastasis and survival??

Mine was 2,643 at diagnosis 7 1/2 years ago. It is 1.0 today.
by Jack&KatiesMommy
Fri Sep 28, 2018 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET Scan Help
Replies: 5
Views: 1507

Re: PET Scan Help

Please, Please, Please have your tumor tested by Foundation One to see if you are MSI High (which is likely to respond to immunotherapy) or MSS (less likely to respond to immunotherapy...unless you have a moderate to high mutation burden in your tumor make up and Foundation One will test for this). ...

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