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by rp1954
Tue Jul 03, 2018 2:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scanxiety and CA19-9
Replies: 6
Views: 320

Re: Scanxiety and CA19-9

Different papers have different opinions. Looks to me like a decent CA199 performance. You have a substantial difference between pre-surgery and post surgery values, which suggests that CA199 is a useful marker. For simple statistics, you have a standard deviation of about 2 units, not bad even grin...
by rp1954
Mon Jul 02, 2018 4:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Skin breakdown during chemo
Replies: 6
Views: 283

Re: Skin breakdown during chemo

Just make sure that the flour is not store bought, enriched flour which is enriched with folic acid. I think the health food stores may have unenriched flour with disclaimers but please check carefully. We use liver products, like liver and liverwurst for the natural folate source and other nutrient...
by rp1954
Sun Jul 01, 2018 6:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Skin breakdown during chemo
Replies: 6
Views: 283

Re: Skin breakdown during chemo

...side effects of oxi/ xeloda. I had a serious reaction to radiation, xeloda. Skin on checks, inner thighs red, broken done and painful. All healed before surgery, a little flare up after surgery but healed again prior to infusion. Now it is bad again, raw, painful. I am using anti fungus powder, ...
by rp1954
Sat Jun 30, 2018 3:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recurrence, Surgery, and Post-Surgery CEA
Replies: 9
Views: 485

Re: Recurrence, Surgery, and Post-Surgery CEA

My view is more blood tests and off label chemistry with mild chemo if they only offer waiting to see, or waiting for a trial. Please review my threads. I'm convinced when our doctors resist related, inexpensive, extra blood tests, they seriously fail us. Nevertheless, our future is still in our han...
by rp1954
Sat Jun 30, 2018 3:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone have experience with this???
Replies: 4
Views: 398

Re: Anyone have experience with this???

Papers on xeloda (pro5FU) with celecoxib, and from Japan, UFT (pro5FU)-cimetidine-PSK, suggest that continuous oral treatment can indefinitely postpone spread and/or recurs for a lot of mCRC, stage 4 patients even with some residual masses. One of Dr Lin's ADAPT papers was approaching 8 years withou...
by rp1954
Sat Jun 30, 2018 3:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung mets after HIPEC
Replies: 7
Views: 1070

Re: Lung mets after HIPEC

Even if lung mets are less marker reactive, I would measure and talk about CA199 and LDH at least once, Various highs and lows are useful too. We had three 6mm lung thingies to deal with at dx. After a year of varied immunochemo combinations, an oral 5FU prodrug with supplements, cimetidine, high vi...
by rp1954
Wed Jun 27, 2018 1:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 3874

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

...my CEA is very sensitive and very reliable as an indicator of cancer for....years My wife's CEA is a good marker until it flatlines near its historical baselines. But we got a slowly rising tide off AFP that doubled more than five times during off-and-on pill/IV C reductions. We get roller coast...
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: 883

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: 41
Views: 3874

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: 1057

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: 1188

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: 361

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: 544

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: 1792

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: 670

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 ...

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