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by Pyro70
Wed Apr 17, 2019 10:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 38946

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Cynthia, If I might add, I think it is amazing kindness and compassion that you reach out to members and educate them about this. Even I spoke with my onc about your posting. I am low mutation unfortunately, but many are not. Thank you BUT....my oncologist said that if they had tested my original t...
by Pyro70
Wed Apr 17, 2019 4:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone Managing Stage IV with Avastin Only?
Replies: 17
Views: 2110

Re: Anyone Managing Stage IV with Avastin Only?

One has to remember that no conclusions about efficacy can be drawn from any single experience. Some people will do well, some will do poorly, with or without intervention. The only way to be certain of a drug efficacy is with high quality statistically significant data (ideally in a double blind, p...
by Pyro70
Tue Apr 16, 2019 11:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 38946

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Well, it was 30. Didn’t expect that, went ahead with treatment. Thanks for thinking of me! Pyro, if you need more encouragement I recently heard Dr. Bekaii-Saab (who seems like one of the smartest CRC oncs to me) say that TMB is likely more important than MSI status. And high tumor mutation burden ...
by Pyro70
Tue Apr 16, 2019 6:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Weisenthal Cancer Center
Replies: 9
Views: 1268

Re: Weisenthal Cancer Center

Seems to be heavy on bias and negativity built on a solid lack of investigation or experimentation. Not much point here in discussing line by line. However, I will say I’m all for investigation and expirmentation, but it needs to be done in a scientifically rigorous manner. CRC is an extremely hete...
by Pyro70
Tue Apr 16, 2019 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 31
Views: 5135

Re: Stage 4 hope to share

rp1954 wrote:Gee, Pyro70, the way you casually toss studies and papers, oncology sites, words n' phrases, strong opinions, and advice out here, you sound kind of medical. Almost like … well, some oncological MDs. Want to give us a hint on any residencies ?


Sorry not an MD.
by Pyro70
Sun Apr 14, 2019 6:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Weisenthal Cancer Center
Replies: 9
Views: 1268

Re: Weisenthal Cancer Center

There is likely limited harm / opportunity lost by using an ineffective regime for a few months anyways. Speaking only for myself, it depends on the side effects. I spent 6 months on a treatment that wasn't working and it about did me in. I don't know how my husband kept me going. If I had known go...
by Pyro70
Sun Apr 14, 2019 5:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Weisenthal Cancer Center
Replies: 9
Views: 1268

Re: Weisenthal Cancer Center

I looked into Weisenthal a bit. Specifically I read his FAQ at: http://weisenthal.org/breast_ca_husband_letter.htm I think it’s clear he operates at the fringes of accepted science. Is this full-blown quackery? probably not, because he is quite upfront about the limitations of chemo sensitivity test...
by Pyro70
Sun Apr 14, 2019 5:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 31
Views: 5135

Re: Stage 4 hope to share

Ever seen Top Gun? Turns out those funny names the fighter pilots all go by is a real thing, thus my name. I was Air Force though, set 1 airfield on fire in Korea.......


Thanks for your service. I wish you luck with Pembrolizumab.
by Pyro70
Sun Apr 14, 2019 5:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone Managing Stage IV with Avastin Only?
Replies: 17
Views: 2110

Re: Anyone Managing Stage IV with Avastin Only?

Hi all, I've been on maintenance Avastin for awhile. Is anyone else doing it? It seems to control my disease, but wondering if anyone stopped and what the outcome was? Maitenance Avastin only? If so, I’m not sure why since this is not a recommended therapy. See below: The other very important point...
by Pyro70
Sat Apr 13, 2019 11:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 31
Views: 5135

Re: Stage 4 hope to share

SIDEBAR - sort of. @Pyro70, good name, funny when youre signing up you never see the guy who took the original name except this time , I digress. Haha yes. I actually have used the screenname pyro70 for many years. “pyro” was the model of my favorite windsurfing sail, 7.0 m2 was the size. So I didn...
by Pyro70
Sat Apr 13, 2019 10:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: O/T - my furbaby has cancer....hard last weekend - UPDATED
Replies: 18
Views: 1743

Re: O/T - my furbaby has cancer....hard last weekend

Animals with cancer get treated with dignity. Humans not so much...
by Pyro70
Sat Apr 13, 2019 3:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What options after chemo no longer effective?
Replies: 26
Views: 2635

Re: What options after chemo no longer effective?

I know nothing about clinical trials but I found this one in Phase 3, concerning IV Vitamin C: https://clinicaltrials.gov/ct2/show/NCT02969681. What do you think? My prior comment was specifically about lab testing chemo susceptibility of tumor samples. I guess the phase 3 trial is a legitimate stu...
by Pyro70
Fri Apr 12, 2019 9:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What options after chemo no longer effective?
Replies: 26
Views: 2635

Re: What options after chemo no longer effective?

I had the live tumor tissue tested with various chemo formulations by an outside lab. I'm seeing my ND today and I'm going to ask her about finding a lab to do this kind of testing. It's something that somehow never occurred to me. Live and learn. Do you mind sharing the name of lab you used? If no...
by Pyro70
Fri Apr 12, 2019 9:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone Had Their Tumor Not Shrink Following Chemo/Radiation?
Replies: 2
Views: 731

Re: Anyone Had Their Tumor Not Shrink Following Chemo/Radiation?

Scans are far from accurate. It’s also possible for tumors to “die” and turn into scar tissue without changing in size a lot. Your pathologist will be able to assess how well the tumor responsed to chemo/radiation. Remember it’s not all about the main tumor anyways, the goal of chemo is also to stop...
by Pyro70
Fri Apr 12, 2019 7:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 hope to share
Replies: 31
Views: 5135

Re: Stage 4 hope to share

You’re focused on food quite a bit, and you’re correct, it can hurt or help a person on chemo. However, I never wanted to eat on FOLFOX, and many people share this problem, if my food were limited, I probably wouldn’t have eaten at all. If he wants an ice cream, let him! There is a lot of good and ...

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