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by juliej
Tue Nov 12, 2019 1:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI on a personal level
Replies: 4
Views: 252

Re: HAI on a personal level

DH is less than a week away from surgery numero uno! Colon resection and HAI yay! This is a personal question that just dawned on. Sex AND HAI, weird? Doable? Top, bottom? Lol forgive me please just plain curiosity! I've always thought it's weird that oncologists never discuss sex or anything relat...
by juliej
Wed Oct 09, 2019 6:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1123

Re: How long does MSK take to get approval to install HAI pump?

I'm told that the combination of Medtronic pump and Codman catheter is off-label and therefore needs FDA approval. Want to confirm or deny that. The clinical trial says this: This study is being done to answer the following question: Is the combination of the Medtronic pump and the Codman catheter ...
by juliej
Wed Oct 09, 2019 6:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any prepping and scoping buddies out there ?
Replies: 25
Views: 1482

Re: Any prepping and scoping buddies out there ?

Today colonoscopy : with my CRC surgeon, sedation, IV fluids sent 1 small "benign" polyp to the lab and I will do follow up with family doc once his report is there next week. So happy to hear this! "Benign" is the key word. Congratulations! :D :D :D Should probably go and work ...
by juliej
Mon Oct 07, 2019 7:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 282
Views: 41221

Re: My CRC with liver mets journey

We will go in on Tues and surgery will be Wednesday the 16th. We will need to have a nice dinner that Tuesday night! Maybe Scarpetta or Bar Masa. Open to recommendations!! I’m just so happy I didn’t have to get more Vectibix today! That was my very first thought - you get a much needed Vectibix bre...
by juliej
Mon Oct 07, 2019 3:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 282
Views: 41221

Re: My CRC with liver mets journey

I’m at MSK today. Had a scan yesterday and was all set to do chemo today. Successfully talked Dr Kemeny into a Vectibix reduction, but then I had my consult with Dr Kingham. He wants me to come in for surgery NEXT WEEK! Holy cow but I’ll take it!! Next week??? Holy cow indeed, but this is excellent...
by juliej
Mon Oct 07, 2019 3:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any prepping and scoping buddies out there ?
Replies: 25
Views: 1482

Re: Any prepping and scoping buddies out there ?

I am supposed to have a flex sig on Wednesday to see if the chemo is shrinking my tumor, but they haven't called to tell me that I have to prep in any way. I'm pretty sure that based on how I am feeling that the tumor is indeed shrinking. Fingers crossed. GI docs often have you do a Fleet Saline en...
by juliej
Thu Oct 03, 2019 7:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long flights with cancer/chemo
Replies: 15
Views: 1532

Re: Long flights with cancer/chemo

I took several long flights during chemo treatment and one trip right after a major surgery (for a funeral, unfortunately). I recommend the following: Compression socks: I wear Pro Compression brand because they come in funky colors/patterns, instead of an older person style. https://procompression....
by juliej
Wed Oct 02, 2019 7:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 50
Views: 14668

Re: Need Support - Told today I'm on Palliative Care

Pathology says all the margins are clean. YAY! YES!!! That's the best news ever! :D :D :D I'm doing fine at the moment, trying to gain weight, and beginning to get braver with my food choices. My body seems to be following a path of its own, with my emotions all over the place, and I'm hoping it's ...
by juliej
Wed Oct 02, 2019 7:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scared of surgery in need of wisdom...
Replies: 24
Views: 2317

Re: Scared of surgery in need of wisdom...

I too was scared (sh*tless) about my first surgery! I had never had any kind of surgery before, not even a simple appendectomy. It was scheduled to be 7.5 hours long, a whole day in which I'd be cut open and attended to by several different kinds of surgeons and then have an HAI pump implanted. When...
by juliej
Tue Oct 01, 2019 6:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: So excited, had to share CEA results!!
Replies: 14
Views: 1279

Re: So excited, had to share CEA results!!

AmyG wrote:When I had my primary tumor removed last year, my first ever CEA was 14. It rose steadily over the months to 167 this April and today....it was...

2.3!!!!

:shock: :shock: :shock:

OMG! That is so incredible!!! :D :D :D

Cancer doesn't know what it's up against!

xo,
Juliej
by juliej
Mon Sep 30, 2019 7:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thoughts on Stage IV...
Replies: 24
Views: 2357

Re: Thoughts on Stage IV...

The "stats" thing has always been the elephant in many rooms here :( BUTT a long time ago ... I decided that something was important enough to put into my ongoing signature here : " my life is an ongoing totally randomized UNcontrolled experiment with N=1 ! " Don't know if that ...
by juliej
Mon Sep 30, 2019 7:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1123

Re: How long does MSK take to get approval to install HAI pump?

How long does MSK take to get approval to install HAI pump? Are they able to get whatever approvals are needed quickly once they decide to use the pump on a particular patient? My understanding is that there can be a 1-2 month wait to sort out paperwork with FDA if getting a HAI pump elsewhere. Won...
by juliej
Mon Sep 30, 2019 7:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 282
Views: 41221

Re: My CRC with liver mets journey

What's maybe more interesting is that my first two rounds of chemo after the surgery have been a breeze. It's almost like my body is tolerating the chemo better now that there is less / no active cancer in my body. (I need another resection to finish off tumor removal, but the ones remaining have c...
by juliej
Wed Sep 18, 2019 5:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Had to have high hopes for a living...
Replies: 9
Views: 1125

Re: Had to have high hopes for a living...

DH is finally moving forward in the steps toward surgery! The OSU campus has 3 old style pumps left and hubby has his name on one. No surgery date yet, he finished his bloodwork they wanted yesterday in prep for chemo today. Awesome news!!! It's interesting they still have a few Codman pumps there....
by juliej
Mon Sep 16, 2019 5:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ...progression...
Replies: 27
Views: 3584

Re: ...progression...

I'm sure I know but can't quite remember but what kind of side effects does one have after HAI placement? What are the chances that they will resect (the colon) during that surgery? There is a very good chance they will resect the colon during the HAI pump placement surgery. It's pretty standard. I...

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