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by rp1954
Tue Feb 20, 2018 11:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stomach issues with 5 FU and Leucovorin
Replies: 1
Views: 78

Re: Stomach issues with 5 FU and Leucovorin

- Glutamine (0.5 - 5 grams per day, up to 30 for Folfiri) may help restore some of the GI lining. 1 gram or less did wonders here on daily chemo. - Pancreatic enzymes have helped some people on chemo with diarrhea. - Pre biotics, or even PSK may help. - Deleting folic acid fortified foods and supple...
by rp1954
Fri Feb 16, 2018 3:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Health Insurance Help
Replies: 12
Views: 410

Re: Health Insurance Help

There are a lot of cash saving skills each "generation" has to develop. Best strategies and tactics can vary with "era", illness, location and circumstances. But know this, cost and cash now require extraordinary caution as you imply your husband is stage 4 in an indifferent sett...
by rp1954
Fri Feb 16, 2018 1:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What's an acceptable delay for lymph node resection?
Replies: 10
Views: 435

Re: What's an acceptable delay for lymph node resection?

...with recurrence in a single 16x14mm para-aortic node (FDG update: SUV max 13) At that SUV, you really, really, really want to get CA19-9, LDH added to the CEA, once or twice before the operation and then 5-7 days after. To be more clear about potentially changing / interfering marker conditions,...
by rp1954
Thu Feb 15, 2018 9:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Worried wife trying to get information
Replies: 11
Views: 451

Re: Worried wife trying to get information

I would invest in extra initial blood testing , even though it is most useful and sensitive starting before surgery. I've had bad personal experience with mealy mouthed or wobbley diagnoses. Some of the most useful and objective data were in doing extra bloodwork. If you don't do chemo, you might do...
by rp1954
Thu Feb 15, 2018 9:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Post Surgery Help and CEA
Replies: 9
Views: 354

Re: Post Surgery Help and CEA

Curcumin caps or tablets with bioperine, but we're doing more than just one flavonoid. Total load counts. Probably the best curcumin-cancer blog is Margaret's Corner for smoldering myeloma, where I think people have done up to 10-12 grams per day of curcumin. In the archives she talks about various ...
by rp1954
Thu Feb 15, 2018 8:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Post Surgery Help and CEA
Replies: 9
Views: 354

Re: Post Surgery Help and CEA

Your wife's CEA spread is well within normal scatter for "no change" at this point following RT and will be unimpressive to the drs. Whether further immediate chemo is planned or not, I personally would monitor bloodwork more closely than is "standard" to define a nadir, her mark...
by rp1954
Sun Feb 11, 2018 9:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What's an acceptable delay for lymph node resection?
Replies: 10
Views: 435

Re: What's an acceptable delay for lymph node resection?

Avastin is typically cause of the 6 week margin before/after surgery, beyond 2-3 week margins for 5FU. We used IV vitamin C and cimetidine instead with the 5FU for KRAS mutant inhibition. Because we were well prepared, used supplments for better wound healing, the surgery was successful and uncompli...
by rp1954
Sat Feb 10, 2018 10:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What's an acceptable delay for lymph node resection?
Replies: 10
Views: 435

Re: What's an acceptable delay for lymph node resection?

I would consider at least getting some kind of chemistry on the PALNs, like the Life Extension stuff (cimetdine, celecoxib +specific supplements) For my wife, there was no substitute for oral 5FU too. Xeloda is the only oral 5FU drug in the US. My wife carried a PALN cluster for over a year, but we ...
by rp1954
Wed Feb 07, 2018 9:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please need some answers, feeling scared
Replies: 5
Views: 374

Re: Please need some answers, feeling scared

Definitely get extra, outside, independent opinions. I talked to several MDs that use different alternative, less known chemistries with interesting medical literature, too. We never agreed to oxi-. We have added a lot of things to oral chemo to improve cancer inhibition. Some of it is driven by ext...
by rp1954
Wed Feb 07, 2018 9:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Needing some information on lymph nodes
Replies: 9
Views: 580

Re: Needing some information on lymph nodes

I've aired my views on better bloodwork before. It takes a while to get it all going, and one's mind can play tricks while waiting for your personal stats to better develop. In the end better bloodwork can provide more reassurance if you're clear, with some better warning and answers if you're not.
by rp1954
Tue Feb 06, 2018 7:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Para-aortic node recurrence
Replies: 15
Views: 1676

Re: Para-aortic node recurrence

...Looks like cancer can take off at lighting speed whenever it wants- that's what is the scariest part for me at least. I agree that IF I can have the surgery, I need to stop chemo as late as possible and then start right back on (even if just 5fu to start) chemo as soon as possible We had the adv...
by rp1954
Mon Feb 05, 2018 4:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Para-aortic node recurrence
Replies: 15
Views: 1676

Re: Para-aortic node recurrence

...My surgeon said that if they stay stable for six months on folfori then he will remove surgically as they are not impacting my aorta or more than 2-3 on the PET scan. I had a CT scan last Tuesday and I've decided to wait to hear the results during my next infusion on Wednesday. My wife had lots ...
by rp1954
Fri Feb 02, 2018 7:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3523
Views: 491270

Re: Wives of husbands with Stage IV Colon Freaking Cancer

I suspect what you would see, if they did more markers, is a big shift in marker expression. Let's say they drew markers CEA, CA199, AFP, CA125, CA72-4,etc (and watched LDH and ALP panels). What you're likely to see is CEA going down perhaps way down, some other marker(s) going up, and LDH going up....
by rp1954
Sun Jan 28, 2018 1:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Care Oncology Clinic
Replies: 3
Views: 362

Re: Care Oncology Clinic

...Has anyone heard of this clinic ? care oncology usa / I suspect most of us have not. I have now read a number of newspaper articles and their webpages. Their emphasis is on cocktails, or a particular cocktail, of off label [off target] drugs to add to regular cancer treatments. Testing these old...
by rp1954
Thu Jan 25, 2018 5:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The Burzynski Clinic
Replies: 10
Views: 575

Re: The Burzynski Clinic

I wouldn't for several reasons. Burzynski was more of a leader in sales, legal and political aspects of alternative medicine 20-30- yrs ago, not so much in actual scientific results or benefits for the individuals. His "neoplastons" represented an interesting concept, academically ~40 year...

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