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by lilacbreastedroller
Wed Jun 10, 2015 1:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why I stopped posting
Replies: 92
Views: 8617

Re: Why I stopped posting

I'm back... My original post was a rant. I could have said it more diplomatically - absolutely. But the subject of lingering long-term NED people and caregivers has been bugging me for awhile, and I own what I said. It is how I feel. Everyone may not agree. [ For the record - I did not single out Be...
by lilacbreastedroller
Wed Jun 10, 2015 9:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why I stopped posting
Replies: 92
Views: 8617

Re: Why I stopped posting

allright Horizon, nobody appointed you moderator either! So how long have you been NED? How often do you check the boards and how often do you post? What sort of advice do you provide to people? Basically, how much time do you put into this board and what do you get out of it? Do you have an end dat...
by lilacbreastedroller
Wed Jun 10, 2015 7:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why I stopped posting
Replies: 92
Views: 8617

Re: Why I stopped posting

I'm with you on the stopping posting. I don't understand why healthy people, or caregivers whose partners have died, still post here!! And on other cancer boards. I can see them posting for a few months, maybe to sort out their grief (caregivers) or people who are NED with scanxiety and want to expr...
by lilacbreastedroller
Wed Jun 03, 2015 6:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 3 year cancerversary
Replies: 1
Views: 509

3 year cancerversary

Well, as of the end of May, beginning of June, I've been alive for three years. Supposedly the maximum for stage IVs is five years, but I"m not sure when that clock starts, or what version of Stage IV one should be at the beginning of said countdown. I was diagnosed with a primary rectal tumor,...
by lilacbreastedroller
Wed Jun 03, 2015 6:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Just a vent and a warning for anyone looking to buy a bidet.
Replies: 15
Views: 1999

Re: Just a vent and a warning for anyone looking to buy a bidet.

I bought a hand spray hose. They look similar to kitchen sink spray hoses, but have a longer hose and attach to the side of the toilet bowl, and some allow you to regulate the pressure of the sprayer. In my area, you can buy them at Home Depot, probably because we have so many South Asians living he...
by lilacbreastedroller
Wed Jun 03, 2015 6:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Jeff Anderson latest treatment plan
Replies: 17
Views: 1623

Re: Jeff Anderson latest treatment plan

That's great, Jeff. Where are you going for the SBRT? Hopkins?

Good luck with everything!

atb
Karin
by lilacbreastedroller
Tue Jun 02, 2015 6:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Avastin
Replies: 13
Views: 1081

Re: Avastin

I did twelve hits of avastin and it did strange things to my snot and quintupled the output. Seriously. It was like I would blow a box of raisins out my nose - thick, hard, and lots of it. And sometimes there were bits of blood in it, but I never had actual nosebleeds. My friend with cervical cancer...
by lilacbreastedroller
Tue Jun 02, 2015 6:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bull in a china shop; why I have a hard time with "cancer hugs" at work
Replies: 40
Views: 3159

Re: Bull in a china shop; why I have a hard time with "cancer hugs" at work

Are you kidding me??? Just because you have cancer, that gives anyone the right to just up and wrap their bodies around you? So at your company, if someone comes to work obviously having had a boob job, do people do a titty twist? I can't imagine what they do if someone transitions ... Good lord. I ...
by lilacbreastedroller
Tue Jun 02, 2015 6:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 603
Views: 163979

Re: TIL Immunotherapy at NCI

Go cells! Nail those tumor bits!!!

(tried to insert a photo of a knockout punch but couldn't.. picture this instead)

- Karin
by lilacbreastedroller
Mon Jun 01, 2015 6:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Maia..
Replies: 17
Views: 2186

Re: Maia..

Maia!!!!! So glad you're back!!

atb
Karin
by lilacbreastedroller
Tue May 26, 2015 6:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 603
Views: 163979

Re: TIL Immunotherapy at NCI

Hey, all. Well, I'm back home after three weeks at NIH. I feel okay but my energy levels vary. After I got my cells, then they pumped me with six treatments of IL-2, which is what the cells are fed with ("red bull") and helps them transition back into the body and thrive. I gained maybe si...
by lilacbreastedroller
Tue May 19, 2015 2:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Got the call yesterday...off to NIH tomorrow! Update - Not accepted
Replies: 17
Views: 1729

Re: Got the call yesterday...off to NIH tomorrow!

Fantastic news! Come see me - I'll PM you with my room number and details. You can check out the layout of the room and figure out what to bring when your DH is an inpatient

Karin
by lilacbreastedroller
Sun May 17, 2015 6:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT - Dr. Lin ONGOING Thread
Replies: 94
Views: 19650

Re: ADAPT - Dr. Lin ONGOING Thread

My oncology practice is running a celebrex + chemo trial for stage IIIs only. fOLFOX only, no avastin. Trial Number: CALGB 80702 Trial Title: A Phase III Trial of 6 versus 12 Treatments of Adjuvant FOLFOX plus Celecoxib or Placebo for Patients with Resected Stage III Colon Cancer CALGB 80702 is a tr...
by lilacbreastedroller
Sun May 17, 2015 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS-wt: Clinical Trial Results for Sym004 (after cetuximab resistance)
Replies: 5
Views: 1853

Re: KRAS-wt: Clinical Trial Results for Sym004 (after cetuximab resistance)

Lucky for them!! cetuximab did aboslutely nothing for me, and with its partner in crime, irinotecan, made me really sick.

Why doesn't it work for some people? (I was KRAS wild - they only test once,though)

thanks
Karin
by lilacbreastedroller
Fri May 15, 2015 4:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I'm thinking of a lilacbreastedroller
Replies: 20
Views: 1659

Re: I'm thinking of a lilacbreastedroller

Thank you all for your support - and they're off, as they say at the races. At 12:30 pm today billions of little t-cells were dripped into me over,th course of a half an hour. No immediate problems. About two hours later, I got short of,breath , a barky cough, and my heart started racing, and my oxy...

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