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by Jack&KatiesMommy
Mon Jun 17, 2019 10:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 17059

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

This is great, Pyro! Please keep us updated on any new developments! This is exactly the kind of thing that could turn into a game changer for so many of us!
Cynthia
by Jack&KatiesMommy
Tue Jun 11, 2019 3:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mop up chemo - Port vs non-port for Oxi?
Replies: 21
Views: 2723

Re: Mop up chemo - Port vs non-port for Oxi?

I did six rounds without a port. I did not have any issue at all. I did it in my arm at inside the elbow joint.

Cynthia
by Jack&KatiesMommy
Fri May 24, 2019 9:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39740

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

I'm so sorry Boswind & Pyro. I always kept going thinking that the longer I stuck around the more new treatments would be available....I have been fighting this disease for 8 years in August and I have seen 3 new breakthroughs and I think there are more just on the horizon.
Cynthia
by Jack&KatiesMommy
Thu May 02, 2019 10:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfiri after Folfox fails
Replies: 8
Views: 1416

Re: Folfiri after Folfox fails

I was on Irinotecan first (for over a year) (with Xeloda) and then was switched to Oxi w/ Xeloda to try to knock out some lung mets that were stable but not shrinking. The Oxi never worked...I went back on Fofiri and we used rfa procedures to knock down the lung mets. Irinotecan was much more effect...
by Jack&KatiesMommy
Sat Apr 27, 2019 7:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39740

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

Boswind...I am praying that it is just taking a little time to kick in and that your scans will be good.

Cynthia
by Jack&KatiesMommy
Wed Apr 17, 2019 8:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39740

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

Cynthia, If I might add, I think it is amazing kindness and compassion that you reach out to members and educate them about this. Even I spoke with my onc about your posting. I am low mutation unfortunately, but many are not. Thank you BUT....my oncologist said that if they had tested my original t...
by Jack&KatiesMommy
Mon Apr 15, 2019 3:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39740

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

Pyro: It maybe on the downswing.....Mine did that a few times....it started to go up then stayed the same then went down. We thought that maybe it had continued to go up a bit then was coming down and we caught it on the downswing. Next cycle will be telling. (Maybe you could ask your oncologist if ...
by Jack&KatiesMommy
Mon Apr 15, 2019 11:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Finally reached the 'forgot I had cancer' spot!
Replies: 16
Views: 2613

Re: Finally reached the 'forgot I had cancer' spot!

Congratulations, Diane....you look beautiful and I am so happy that you are here to share in their lives and live yours without thinking about cancer all fo the time!!!
Cynthia
by Jack&KatiesMommy
Tue Apr 09, 2019 12:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: T3cN2a, refusing chemotherapy?
Replies: 80
Views: 27376

Re: T3cN2a, refusing chemotherapy?

I did 3 years of Folfiri and 6 months of Oxiplaintin....I have no permanent damage. And I am still here today (8 years later.)
by Jack&KatiesMommy
Mon Apr 08, 2019 12:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy Questions
Replies: 5
Views: 1007

Re: Immunotherapy Questions

Immunotherapy has not been used long enough on CRC to have been on it for the recommended period (24 months) and off it long enough to answer your questions. MY oncologist, who has used the Keytruda since its FDA approval in 2015, said that in other types of cancer after stopping the drug, in some c...
by Jack&KatiesMommy
Mon Apr 01, 2019 3:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: oncolytic virus trials
Replies: 2
Views: 611

Re: oncolytic virus trials

Tim:
Are you MSI or MSS? Do you know your mutation burden? Keytruda has been working for me after 7 years of fighting my cancer back. I am MSS but have a moderate mutation burden so it is working for me. It may be an option for you.
by Jack&KatiesMommy
Sun Mar 31, 2019 8:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39740

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

After my first treatment my CEA went from 39.6 to 66.4. Then 3 weeks later it went back to 39.2...and then it continued down after that.

Praying for both of you!

Cynthia
by Jack&KatiesMommy
Thu Mar 21, 2019 10:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung specialist at MSK or MDA? Advice, please.
Replies: 15
Views: 1853

Re: Lung specialist at MSK or MDA? Advice, please.

Have you had your Tumor Mutation Burden tested? I won't go into the whole story here but I am MSS also and because I had my tumor tested at Foundation One they also determined my Tumor Mutation Burden. I had 12 mutations which was a lot for an MSS tumor. So because of that my oncologist got permissi...

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