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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: 31
Views: 2276

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: 31
Views: 2276

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: 458

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: 458

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: 458

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: 753

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
by jep
Fri Aug 30, 2019 11:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: second guessing everything right now . . .
Replies: 10
Views: 753

Re: second guessing everything right now . . .

Thank you Mike . . . I wonder if Yale/Smilow does theirs on site (?) . . . again, I will definitely ask the docs when we see them or speak with them.
jep
by jep
Fri Aug 30, 2019 10:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: second guessing everything right now . . .
Replies: 10
Views: 753

Re: second guessing everything right now . . .

Wow, really? I didn't realize that it would take that long :( . . . thank you for the heads up . . . I will ask my husband's doctors about that.
by jep
Fri Aug 30, 2019 4:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: second guessing everything right now . . .
Replies: 10
Views: 753

Re: second guessing everything right now . . .

Thank you Punky, and thank you Mike! Yes, I have read quite a bit lately (on this forum) about the difference between genetic testing and genomic . . . so we are finally getting the genomic testing done. My husband's only mets that we know of are these 2 para aortic lymph nodes and a very small spot...
by jep
Thu Aug 29, 2019 4:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: second guessing everything right now . . .
Replies: 10
Views: 753

second guessing everything right now . . .

I just got off of the phone with my husband's oncologist . . . we are having the DNA sequencing testing done at Yale, and hopefully there will be a clinical trial available . . . I'm really pissed at myself right now because I thought this testing had been done already. My husband sees a local oncol...
by jep
Fri Aug 23, 2019 6:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Olymphians w/ surgery advice/experiences??
Replies: 31
Views: 2276

Re: Olymphians w/ surgery advice/experiences??

Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)? My husband's oncologist has suggested something that sounds like SBRT . . . intense/targeted radiation given in 5 sessions . . . I will double check with him, but it sounds exactly like SBRT . . . I've read that the "Proton Beam...
by jep
Thu Aug 22, 2019 8:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery did not happen
Replies: 13
Views: 792

Re: Surgery did not happen

His second surgery was supposed to include the resection of 2 lymph nodes, and the removal of his entire rectum (with permanent ostomy), as he had a recurrence in that area....
by jep
Thu Aug 22, 2019 7:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick intro -- diagnosed Friday
Replies: 129
Views: 10839

Re: Quick intro -- diagnosed Friday

Great news! Sounds like a successful surgery....take it slow and feel better soon!!
jep
by jep
Thu Aug 22, 2019 3:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery did not happen
Replies: 13
Views: 792

Re: Surgery did not happen

He just had a pre-surgery MRI this past Friday....
by jep
Thu Aug 22, 2019 12:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Worried about chemo port
Replies: 24
Views: 1467

Re: Worried about chemo port

boxhill wrote:The reason that I personally would call ahead of time is that your onc is unlikely to be able to pull a chest xray out of a hat on infusion day, thus resulting in delays if there is a problem.


Good point!

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