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by juliej
Fri Dec 13, 2019 4:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please help, input needed
Replies: 43
Views: 3215

Re: Please help, input needed

Ulendon wrote:Currently sitting in the parking lot drinking a grand Chai latte to fill up my bladder.

That's an excellent way to fill your bladder! I love Chai lattes. :D

Be calm, take a deep breath, you can do this!

Juliej
by juliej
Wed Dec 11, 2019 6:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: After HAI
Replies: 5
Views: 713

Re: After HAI

So its an infection and currently waiting for some of the fluid around the pump to be extracted for testing Sending good thoughts that it's something minor! I'm with Gina - wearing any kind of supportive garment (running tights, etc.) helps it feel more secure. I'm thin too but mine often felt like...
by juliej
Wed Dec 11, 2019 6:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Memorial Sloan Kettering Hotel Option Question
Replies: 9
Views: 726

Re: Memorial Sloan Kettering Hotel Option Question

Helmsley Medical Tower is about $283 a night, which isn't cheap but it's a real apartment with a kitchen, which means you can save money by eating breakfast, etc. there. They aren't for the general public - just for medical patients going to NY Presbyterian or MSK. The staff is wonderfully supportiv...
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: 388

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: 1264

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: 1627

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: 287
Views: 44698

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: 287
Views: 44698

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: 1627

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: 1656

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: 14993

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: 2486

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: 1371

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: 2557

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: 1264

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...

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