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by rp1954
Sun Sep 27, 2020 11:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 375
Views: 92835

Re: My CRC with liver mets journey

... was also given by my Dr at MSK a 'definitely' chemo for life option, I didn't take it well ...to say the least. ... MSK is not favorable towards maintenance chemo. ... I also go to MSK and have asked for it, they wouldn't give me claiming there isn't enough scientific data to suggest its effect...
by rp1954
Thu Sep 03, 2020 10:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stg 4 para aortic and Iliac Lymph Nodes
Replies: 41
Views: 9508

Re: Stg 4 para aortic and Iliac Lymph Nodes

I have been trying to convince my doctor to do maintenance chemo with no luck. They said they don't do maintenance chemo there as researches did not show enough evidence that it works. Their firm objection means find other, less common drs to help you. There is some circularity in their argument an...
by rp1954
Fri Aug 21, 2020 11:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PSK supplements
Replies: 10
Views: 1767

Re: PSK supplements

I haven't stored PSK powder myself. For high humidity with other highly sensitive items, I have used multiple overpacks. Say a large, less permable plastic/metal outer jar, sealed. Flimsy plastic bag around that in the freezer. Then heavy, ziplocked freezer bags inside the main container with silica...
by rp1954
Fri Aug 21, 2020 11:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PSK supplements
Replies: 10
Views: 1767

Re: PSK supplements

The major indicator of useful quantity and quality for PSK, is the assayed % beta-glucans content to get actual beta-glucan content. The major therapeutic PSK versions have ranged about 30% - 45%. Lower is not better. PSP is a different creature. Loose PSK powder is more vulnerable to storage condit...
by rp1954
Tue Aug 11, 2020 2:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Had Seizure- in Hospital 4 days
Replies: 8
Views: 1784

Re: Had Seizure- in Hospital 4 days

5FU with dewormer compounds (e.g. levamisole, abendazole, mebendazole, fenbendazole etc) are tricky on nasty side effects and spacing (or combined) from what I've seen in the literature, and on members from these boards. 10 years ago I found some literature that showed harsh side effects for some de...
by rp1954
Wed Aug 05, 2020 10:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Had Seizure- in Hospital 4 days
Replies: 8
Views: 1784

Re: Had Seizure- in Hospital 4 days

How long did you overlap (how much?) fenbendazole (etc) with (how much?) chemo?
by rp1954
Wed Aug 05, 2020 1:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: For Stage III's: NED for how long now?
Replies: 801
Views: 333016

Re: For Stage III's: NED for how long now?

Congratulations. Great to hear you're through the Big 10, Bill. And thanks for your insights and longitudinal comments on long term Folfox effects. NMS It's been a great bonus decade—both my daughters got married and I've seen the birth of 3 granddaughters, so I couldn't be more content. Just one an...
by rp1954
Wed Aug 05, 2020 1:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA and CA 19-9
Replies: 5
Views: 880

Re: CEA and CA 19-9

...CA 19-9 was 50 when he started and is now 27... ...It looks like these numbers are good and his treatment is working? Does this mean that a lot of the cancer has gone away? It could be an important start - markers going down vs up is a big deal, but still lots to go. In the Japanese papers I rea...
by rp1954
Tue Jul 21, 2020 12:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED- back in right ovary
Replies: 8
Views: 1991

Re: No longer NED- back in right ovary

In the rational "alternative" and off label uses world, KRAS mutants may be more treatable. Like over a dozen decent additive candidates to 5FU (e.g. xeloda). Extra off label chemistry allowed us to get past surgical denials as well as oncological gloom and doom. I do believe in "bett...
by rp1954
Mon Jul 20, 2020 5:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT and Celebrex - What happened?
Replies: 28
Views: 8142

Re: ADAPT and Celebrex - What happened?

My wife took celecoxib at 300-400 mg per day, with her daily chemo (and lots of carefully selected supplements), for over five years. Early in our chemo-supplements-celecoxib series, her markers rose but liver panels were good at 200 mg. At 300 mg her markers were stable or slightly depressed and li...
by rp1954
Tue Jun 02, 2020 12:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Interesting paper about fasting and vitamin C
Replies: 17
Views: 2379

Re: Interesting paper about fasting and vitamin C

Low carb "FMD" diet + exercise + various chemo (oral 5FU, celecoxib, early CA199-cimetidine, aspirin at different times) + selected neutraceuticals and megavitamins appeared to work best together in my wife's case. There were clear incidents where dose reduction or loss of components, incl...
by rp1954
Tue Apr 28, 2020 1:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: S-1 Maintenance Chemo
Replies: 2
Views: 1083

Re: S-1 Maintenance Chemo

I'll answer here. My wife took UFT, tegafur - uracil, every day for 8 years, along with a lot of other chemistry, hand fit for her with a lot of observation, blood and tissue work. Uracil is a mild competitive inhibitor for fluorouracil; UFT is a milder drug dosed as daily immunochemo TID, as develo...
by rp1954
Wed Mar 25, 2020 12:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DK37 Science Posts List
Replies: 17
Views: 42733

Re: DK37 Science Posts List

Derek appears outside the loop on vitamin C. Pauling was aware of the pro-oxidation effect (and Dr Klenner), but got spooked by one the great first hits in cancer medicine. The patient's extensive tumors apparently all necrosed after one infusion - so the patient died of tumor lysis syndrome - too m...
by rp1954
Mon Nov 11, 2019 1:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My recent significant CEA jump.
Replies: 27
Views: 4339

Re: My recent significant CEA jump.

We may end up ceasing to monitor CEA. Although the CEA rise causes you a lot of stress, with CEA rising or accelerating, cessation of CEA monitoring could be an especially bad idea now. While I hope that your CEA mystery is one for the record books on false alarms, I wouldn't literally bet everythi...
by rp1954
Fri Oct 25, 2019 2:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Who is on your team?
Replies: 15
Views: 1470

Re: Who is on your team?

...The functional medicine doctor has her own practice and is open to doing things in parallel with chemo. I get IV vitamins that support me during treatments. In the beginning, she did a complete work up which we repeat every three months. So things like inflammation markers, cholesterol profile, ...

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