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by jep
Thu Oct 10, 2019 10:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: phase 1 first in human
Replies: 0
Views: 240

phase 1 first in human

Hey everyone . . . so my husband got a spot in a phase 1 "first in human" clinical trial. This is both exciting and nerve wracking . . . we just got the paper work and I need to read through everything and do some research. Just wondering if anyone has experience with a "first in huma...
by jep
Fri Oct 04, 2019 4:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1230

Re: Lonsurf- anyone currently taking?

Thank you for that info!!
by jep
Fri Oct 04, 2019 3:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1230

Re: Lonsurf- anyone currently taking?

Thank you Amarie... I did a “lonsurf” search in colon talk, and your thread was the only that popped up....how long is a typical cycle?
Thanks!
jep
by jep
Fri Oct 04, 2019 1:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1230

Re: Lonsurf- anyone currently taking?

My husband's oncologist is thinking about using Lonsurf to "plug the gap" while we wait for a spot to open up in a clinical trial . . . I've read through this thread and I'm wondering if anyone has any updates or further information.
Thank you all,
jep
by jep
Tue Oct 01, 2019 8:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Got post-op staging
Replies: 20
Views: 1381

Re: Got post-op staging

Yes, I believe that negative margins are the same as clear or clean margins...
by jep
Tue Oct 01, 2019 2:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Got post-op staging
Replies: 20
Views: 1381

Re: Got post-op staging

I’m sorry that you didn’t get better news....my husband had a similar report with 8/20 nodes involved....he would have been staged 3B if it weren’t for 1 distant node that pushed him to stage 4....This is devastating news, but you have a lot to be hopeful about....the surgeon may have gotten everyth...
by jep
Sat Sep 28, 2019 11:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Screw Cancer, Hospice is Here
Replies: 25
Views: 3371

Re: Screw Cancer, Hospice is Here

Spectacular!!! Enjoy that beach time with the fam, and keep the pics coming!! It’s inspiring us to book a family trip :)
by jep
Wed Sep 25, 2019 2:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Olymphians w/ surgery advice/experiences??
Replies: 33
Views: 2924

Re: Olymphians w/ surgery advice/experiences??

Well, 3 different doctors have now suggested that my husband move forward with a clinical trial....they feel that his treatment needs to be systemic (and that radiation can be done at any point)....great appointment at Smilow today....they have 2 trials in mind for my husband, But the team meets tom...
by jep
Mon Sep 23, 2019 5:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Olymphians w/ surgery advice/experiences??
Replies: 33
Views: 2924

Re: Olymphians w/ surgery advice/experiences??

Thank you Siti....I will research that technique....sounds very interesting....the trial in NYC is closed....we got the call today....that’s ok though, as we are headed to Yale on Wednesday to see what they have to offer. My husband may decide to go with the radiation (cyberblade)....
by jep
Thu Sep 19, 2019 8:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Olymphians w/ surgery advice/experiences??
Replies: 33
Views: 2924

Re: Olymphians w/ surgery advice/experiences??

Hi Siti! The trial is a combination of Temozolomide and Nivolumab. The Temo is a pill and the Nivo is an injection (once every 2 weeks, I believe)....still not sure if my husband qualifies, or if this is the direction he wants to go.....cyberblade radiation sounds very promising as well....tough cho...
by jep
Wed Sep 18, 2019 7:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Olymphians w/ surgery advice/experiences??
Replies: 33
Views: 2924

Re: Olymphians w/ surgery advice/experiences??

Hey everyone....just a quick update on my husband’s LN situation. The surgery did not go as planned and the lymph nodes are not resectable....one is even wrapping around (and slightly compressing) his vena cava....we met with his onc at MSK today and she is very optimistic about radiation (the cyber...
by jep
Wed Sep 18, 2019 4:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 657

Re: Insurance denied husband’s genomic testing

Great news!! Apparently Yale went forward with the Oncomine testing despite the insurance denial!! They have the results and have shared them with my husband’s local oncologist....we meet with him Friday to discuss....we also head to Yale in 1 week to meet with the Phase 1 director there....Yale wil...
by jep
Tue Sep 17, 2019 1:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 657

Re: Insurance denied husband’s genomic testing

Thank you all for sharing your experiences and well wishes! My husband called his oncologist yesterday, and his doc is calling to appeal. The testing is being done at Yale, so I'm not sure how they might handle a situation like this, but we will ask at our appointment next week. Yes, we will keep pu...
by jep
Mon Sep 16, 2019 7:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 657

Insurance denied husband’s genomic testing

Got a letter from our insurance company saying that they will not pay for the genomic testing....has anyone written an appeal before? That’s where we’re headed...
by jep
Fri Aug 30, 2019 1:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: second guessing everything right now . . .
Replies: 10
Views: 856

Re: second guessing everything right now . . .

Thank you pyro70 . . . my mom's friend is an oncologist and he told me the same thing last night . . . "speak to a radiation oncologist" . . . I totally agree with you . . . we can't wait for those results to take action . . .
I appreciate your advice!
jep

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