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by rp1954
Sat Jan 19, 2019 3:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ehlers-Danlos Syndrome & CRC
Replies: 3
Views: 1592

Re: Ehlers-Danlos Syndrome & CRC

Thanks for that link on the Ehlers-Danlos version of malabsorption and gut problems. The slide show had a lot of overlap with the naturopathic - leaky gut books with some elaborations. One whole area seemed to be missing in the slide show: major digestive factors like stomach acid, pepsin, bile, and...
by rp1954
Fri Jan 18, 2019 3:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What to do after immunotherapy works
Replies: 7
Views: 417

Re: What to do after immunotherapy works

Maybe you can get some data from other cancers' patients like J&KMom said. Totally outside of the Keytruda, we've had the longer interval vs reduced dose experiments go either way with different items. The main thing has been to have a better than standard monitoring program, with a recovery pla...
by rp1954
Tue Jan 15, 2019 5:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please positivity about peri met
Replies: 7
Views: 903

Re: Please positivity about peri met

In the first month after diagnosis, we "accidently" wiped out a lot of peri met material, essentially a locally complete cure in the area after all the necrotic material was scooped and scraped out. Presumably this was achieved by my wife's mild neoadjunctive substances, immune aids like c...
by rp1954
Mon Jan 14, 2019 4:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When does the ride stop?
Replies: 9
Views: 1014

Re: When does the ride stop?

One thing that is important with stage IV in early dissemination is to push treatment margins in several directions, softly with less damage than normal. - We were more aggressive in finding and applying useful chemo/chemistry to stop the spread and to maintain it more continuously than considered p...
by rp1954
Mon Dec 31, 2018 1:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo after Surgery?
Replies: 6
Views: 502

Re: Chemo after Surgery?

The question is whether you are in the stage 1 majority that will not recur without treatment, or not. If not, what would be the best diagnostics and treatments now or, overall ? It is possible that there are nonstandard preventative answers - that residual odds can be shifted, like treating hypoxia...
by rp1954
Thu Dec 27, 2018 3:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I need help deciding treatment after surgery!! THIS isn't Easy!!
Replies: 8
Views: 635

Re: I need help deciding treatment after surgery!! THIS isn't Easy!!

I don't normally comment on rectal cancer because even an inch away there are biological differences and, usually, radiation upfront for RC. In the US you will likely have three choices, radiation and chemo, Xeloda alone, or Folfox alone. Since you didn't have prior radiation, you should be aware of...
by rp1954
Tue Dec 18, 2018 4:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question about platelets
Replies: 6
Views: 1061

Re: Question about platelets

The oncologists usually delay or stop treatments below 50 to 100; doctors vary. Platelet levels below 10 to 30 are treated as an emergency, again doctors will vary.


At the diagnosis of cancer platelet are often usually above the population average, like with your mom.
by rp1954
Sat Dec 15, 2018 6:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly Diagnosed, Surgery Next Week
Replies: 3
Views: 816

Re: Newly Diagnosed, Surgery Next Week

It is now harder to get LEF's 2010 and 2017 dosage recommendations for CRC pre-op from online sources. This link is what we did: "Especially the cimetidine (Tagmet, available over the counter) before surgery. These are most of the supplements that we used the weeks before surgery, missing the M...
by rp1954
Sat Dec 15, 2018 5:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Incomplete colonoscopy - worried about surgery
Replies: 7
Views: 915

Re: Incomplete colonoscopy - worried about surgery

...which could be discovered now if we have the right diagnostic tools, then possibly having to go through more surgery soon after to remove additional masses, frightens me. Has anyone had a similar situation and/or been presented with another option to see things better before going in? My wife wa...
by rp1954
Fri Dec 14, 2018 6:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly Diagnosed, Surgery Next Week
Replies: 3
Views: 816

Re: Newly Diagnosed, Surgery Next Week

We took several decisive actions at this point in the diagnosis-treatment chain to improve the odds, and it has paid off big time. My view is that these first days and weeks can be used more effectively to increase the odds of a cure, or in the bad scenarios, gain years of survival with less side ef...
by rp1954
Fri Dec 07, 2018 6:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.
Replies: 27
Views: 4740

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

My wife was dx'd ~8.7 years ago, what turned out to be stage 4b (AJCC 6th)/4c (7th ed) colon cancer - mets in the omentum, various deposits, para aortic biopsied; unbiopsied immune/chemoreactive objects in the liver and lungs. We used the best regional surgeons we could find (region = 20m - 100m), a...
by rp1954
Fri Dec 07, 2018 6:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Supplements post treatment
Replies: 4
Views: 440

Re: Supplements post treatment

Here is a thread about this with a wealth of information on this subject Much of that wealth of information in the link has gone missing; the contents of my links to those Life Extension cancer protocols have been abridged and damaged by the FDA's latest round of censorship and attack against LEF. ...
by rp1954
Thu Dec 06, 2018 8:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA as a marker during chemo?
Replies: 11
Views: 868

Re: CEA as a marker during chemo?

Eleda wrote:...My CA19/9 had increased from 6 to 17

Eleda, if cost is an issue, I'd suspend CA199 until 6+ months after Folfox stops, maybe get one more near the end of Folfox just to see the approximate peak.
by rp1954
Thu Dec 06, 2018 8:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mixed bag kinda day: progression, genomic results, and trial
Replies: 17
Views: 1287

Re: Mixed bag kinda day: progression, genomic results, and trial

Anyway, I asked my onc about testing for CA199. She kinda poo-poo'ed it as not being very useful for me. We'd considered it when we believed my CEA markers were no longer reliable. But, CEA is increasing and correlating with my new liver mets and growth. Yeah, standard wrong or non-informative onco...
by rp1954
Thu Nov 29, 2018 7:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mixed bag kinda day: progression, genomic results, and trial
Replies: 17
Views: 1287

Re: Mixed bag kinda day: progression, genomic results, and trial

I hope that you are able to track some of the extra blood markers and panels that I've talked about, at least before and after any treatments, particularly CA199 (especially at least once), AFP, LDH, with hsCRP(and ESR) for an inflammation level(s). Also the trial is likely to be tracking more blood...

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