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by rp1954
Tue Jun 19, 2018 2:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A cautionary tale
Replies: 13
Views: 677

Re: A cautionary tale

Gosh, from the angry verbiage and denunciations, I thought this guy was going to be a real refusenik. Nope, he did 9 rounds of folfox-Avastin, got hammered; did Erbitux, got hammered; did Vectibix and had some success; did some rounds of surgery including Hipec, and then eventually, Stivarga. I do t...
by rp1954
Mon Jun 11, 2018 8:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 33
Views: 2597

Re: Trying Keytruda Off-Label (MSS with a Twist)

Congratualtions on the CEA decline. I would still track CA199, LDH, MCV (a pronounced rise is probably desirable if folate replete) and maybe some others on my list to investigate your response and status thoroughly. It is harder to hit what we don't see. My wife would have been backdoored many time...
by rp1954
Wed Jun 06, 2018 9:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Avastin in UK's NHS vs. USA Healthcare
Replies: 34
Views: 881

Re: Avastin in UK's NHS vs. USA Healthcare

The place where both USA and UK systems have failed is with respect to off label and generic drugs, and oncology supplements. In the US, UFT was never even available. Basically, early use of cimetidine for CA199+CSLEX1 positive tissues (~65% of stage 3 and 4 at dx?) or celecoxib for stage 4 started ...
by rp1954
Wed Jun 06, 2018 8:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No, we don't have the best healthcare system
Replies: 24
Views: 1052

Re: No, we don't have the best healthcare system

Our entire chemo costs for 8 years of daily chemo, without using our insurance for chemo in any way, are approximately $18,000 for generic versions of UFT (a 5FU prodrug), low dose leucovorin, cimetidine, celecoxib and...aspirin. We avoided Celebrex and its related costs in the earlier years, and by...
by rp1954
Sat Jun 02, 2018 10:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT protocol
Replies: 4
Views: 328

Re: ADAPT protocol

We have immunochemo, something like an extended, nicer ADAPT protocol "forever" for ill defined masses, prior distant lymph node spread, and reactive markers. Even with UFT, immunochemo still has its burden, Xeloda is less nice. I wouldn't rush it. I have discussed improved blood monitorin...
by rp1954
Mon May 28, 2018 4:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Flying Blind
Replies: 6
Views: 501

Re: Flying Blind

We also track CA199, AFP and LDH when CEA is not performing, with ESR and hsCRP for background inflammation that can affect these markers.
by rp1954
Thu May 24, 2018 7:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please! Read me...
Replies: 23
Views: 1658

Re: Please! Read me...

NED typically requires firm, proactive steps that require you to gather extra information, to carefully marshal and conserve resources, and to strongly advocate for yourselves. Many important steps are not standard and require extra thought and effort. The more details you share, the more people can...
by rp1954
Fri May 18, 2018 2:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Isolated Retroperitoneal Metastases with Unelevated Markers
Replies: 6
Views: 611

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

I'm a bit confused about the relevance of your response.....CEA and CA 19-9 ought to be particularly sensitive for such a substantial mass if this were cancer . . [CEA/CA199]...only if the tissues are certain types of CRC or gastrointestinal cancer, AND communicate well to the blood. Also some met ...
by rp1954
Thu May 17, 2018 7:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Isolated Retroperitoneal Metastases with Unelevated Markers
Replies: 6
Views: 611

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

There are several possible attacks on diagnostics. 1. An expanded, less specific approach of panels associated with cancer, or even other conditions, measured before and after surgery. The nonspecific panels' meanings were pursued from the literature to avoid being blindsided. More cancer markers, s...
by rp1954
Wed May 16, 2018 3:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New to forum - CEA trending up while on adjuvant chemo
Replies: 14
Views: 555

Re: New to forum - CEA trending up while on adjuvant chemo

I asked about my CA19-9 level when I was first diagnosed, but was told that it is not normally tested... Correct, but a potentially costly omission for the many patients that would respond to added cimetidine, maybe IV vitamin C and/or MK4(a vit K2), or show a drug response in CA199 data earlier or...
by rp1954
Tue May 15, 2018 7:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New member with Xeloda question for Stage II
Replies: 18
Views: 853

Re: New member with Xeloda question for Stage II

Here are some possibilities. - It's possible that you have DPD inhibition (genetic or chemically induced) which makes 5FU more potent, where lower doses act like higher doses in other people. - It is possible that you have toxicity associated with folic acid or some drugs. Toxicity means it harms yo...
by rp1954
Sat May 12, 2018 7:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Back to hospital for ascites
Replies: 11
Views: 853

Re: Back to hospital for ascites

, the CT scan showed significant disease progression, and metastasis into new areas. It also showed pleural effusion and ascites. She had thoracentesis, where they drained 1.5L of fluid from her chest, and at least that has helped with her shortness of breath... However her AST/ALT are too high (~7...
by rp1954
Fri May 11, 2018 3:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT - Dr. Lin ONGOING Thread
Replies: 94
Views: 11859

Re: ADAPT - Dr. Lin ONGOING Thread

Could you elaborate on "extra stress to liver markers"? My wife's liver panels have typically been pretty well in the normal range, and we aim to keep them there, stepping on serious deviations by withdrawing something suspicious or adding nutrients or intensifying immunochemo. I think al...
by rp1954
Fri May 11, 2018 10:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT - Dr. Lin ONGOING Thread
Replies: 94
Views: 11859

Re: ADAPT - Dr. Lin ONGOING Thread

I am re-surfacing this ADAPT thread for new members about an important treatment component, celecoxib. Please read it all if you haven't already, especially if you need more chemo or chances. ----------------------- Note: Many of my wife's supplements and her cimetidine have been at stronger doses i...
by rp1954
Thu May 10, 2018 11:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Peritoneal CA secondary to Colon CA
Replies: 5
Views: 552

Re: Peritoneal CA secondary to Colon CA

No port is usually pretty difficult for oxi- over just a few times bare, or else some aggravation with a Picc line installed in the arm for a while. A few have done okay for longer stretches with oxi- but most going bare stop sooner than later. Otherwise, without a port, your bff might go mostly wit...

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