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by lilacbreastedroller
Wed Mar 11, 2015 8:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 71264

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Hi. This clinical trial (young TILs) has been opened up to patients with solid tumors and I believe there are five cancers in the trial. Yes this therapy did have early successes with melanoma patients. I've read that melanomas are easier to treat because they have so many mutations. Solid tumors ar...
by lilacbreastedroller
Tue Mar 10, 2015 12:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VIRUSES TO KILL CANCER!
Replies: 6
Views: 1529

Re: VIRUSES TO KIL CANCER!

Yes! I saw it. Great program, eh?

Here is a link a colorectal trial in Ohio (thru Ohio State University) using a modified measles virus - it is a phase 1 trial and includes MCRC

https://www.clinicaltrials.gov/ct2/show/NCT01376505?term=measles+cancer&recr=Open&rank=7

Karin
by lilacbreastedroller
Tue Mar 10, 2015 7:24 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 71264

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Hi, Harry. I'm sorry about your daughter. She's close to my age. It's a shame that in the US, colon cancer screening is not taken seriously until after age 50. I started Stivarga in September of 2014 and stopped in January 2015. It was still working but I'm now on a clinical trial, and they wanted m...
by lilacbreastedroller
Tue Mar 10, 2015 7:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PE Recovery?
Replies: 9
Views: 1313

Re: PE Recovery?

Wow. What an experience. I got a PE last fall, but not from air travel. I don't really know how I got it, but my onc says that cancer patients are especially susceptible. I had a routine scan and there it was, a large PE in my lungs. Never had a DVT beforehand. I was immediately put on lovenox as we...
by lilacbreastedroller
Sun Mar 08, 2015 7:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES
Replies: 146
Views: 71264

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Hi, Harry. Six weeks is an average, probably taken from a bell curve. What stage cancer do you have? Or are you a caregiver? Your profile and message tag don't say anything - are you or a loved one contemplating taking Stivarga? My take on any new drug is back to the bell curve. The side effects lis...
by lilacbreastedroller
Sun Mar 08, 2015 7:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: has anyone tried immunotherapy?
Replies: 9
Views: 1688

Re: has anyone tried immunotherapy?

Hi, Joanna. I've tried immunotherapy; I'm on my third attempt now. You might want to just do a keyword search through the forum on "immunotherapy" and you'll find some really good information and testimonials that's already been posted about this topic. First try was in Germany and NYC whe...
by lilacbreastedroller
Thu Mar 05, 2015 4:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clinical Trial Information
Replies: 11
Views: 9467

Re: Clinical Trial Information

Thanks CRguy - A permanent thread about clinical trials would be really useful, with basic information and maybe updated links to CRC trials. Before I started doing trials I knew very little about them. I didn't know NCI was free and I did think that trials all were randomized. For now, until such a...
by lilacbreastedroller
Wed Mar 04, 2015 1:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clinical Trial Information
Replies: 11
Views: 9467

Re: Clinical Trial Information

You're welcome! Did anyone watch the latest installment of HBO’s “ Vice ” series, “ Special Report: Killing Cancer ” http://killingcancer.vice.com Very interesting program. They profiled several clinical trials for different cancers where genetically modified viruses such as measles and HIV were use...
by lilacbreastedroller
Mon Mar 02, 2015 11:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clinical Trial Information
Replies: 11
Views: 9467

Clinical Trial Information

In this thread, I’d like to post some information about clinical trials in the US, based on my experience participating (as a lab rat) in two of them! Feel free to add to this. 1. Where to find trials http://www.clinicaltrials.gov is the official US Government sponsored database for clinical trials....
by lilacbreastedroller
Mon Mar 02, 2015 7:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 635
Views: 256448

Re: TIL Immunotherapy at NCI

Skypup - put your hat in the ring for this one. Why not? The more colorectal patients the more data, and the better for all of us. I double dog dare you. Ceebo: re: when to choose a trial. I started trials (this is my second) when the standard chemo drugs stopped working, and I was running out of op...
by lilacbreastedroller
Wed Feb 25, 2015 10:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 635
Views: 256448

Re: TIL Immunotherapy at NCI

Fantastic! Congratulations! I was impressed by Dr. Goff, so I"m not surprised that she got you in. Or, as it sounds, YOU got you in. Way to go. Seems it was meant to be. So when is your surgery? Are we brave and bold or what? The point of this study, I think, is to find mutations in our tumors ...
by lilacbreastedroller
Tue Feb 17, 2015 11:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The Port
Replies: 22
Views: 2498

Re: The Port

It took me six months or so to really adjust to my port. I still don't like to touch the area because it feels gross, so I dont. I went to the beach last month and of course put on sunscreen. Well, I never touch the port area, so I didn't. Well.. I got a big circle of sunburn on and around my port b...
by lilacbreastedroller
Wed Feb 11, 2015 7:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 635
Views: 256448

Re: TIL Immunotherapy at NCI

Pollo - Several people sent me this NPR article this week! Did it pop up in facebook? It shows my friends and family are interested and care, which is nice, but this topic is so complicated. I actually took Nivolumab (the drug in the article you posted) last summer as part of another clinical trial ...
by lilacbreastedroller
Tue Feb 10, 2015 8:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Do I Subconsciously have a Death Wish ?
Replies: 21
Views: 2791

Re: Do I Subconsciously have a Death Wish ?

Hi. I am american but half Canuck. My family went to Canada in the 1600s and is from normandie and Picardie; came to the U.S. around 1900.. I speak no french but my mother does (assimilation issues. Dinner table discussion topic for many Immigrant families I am sure.) I have a twist on the death wis...
by lilacbreastedroller
Tue Feb 10, 2015 8:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Oxaliplatin-the gift that keeps on giving
Replies: 16
Views: 2928

Re: Oxaliplatin-the gift that keeps on giving

I drank a ton of water when I took oxi. Didn't have kidney damage that I know of. Did 12 treatments. Had gnarled hands for about six months, but that is all gone. Have reduced sensitivity in my fingertips and the balls of my feet. Oddly, when I take clothes out of the dryer, it is difficult for be t...

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