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by Tupelo honey
Thu Oct 04, 2018 9:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: High alkaline phosphatase?
Replies: 5
Views: 359

Re: High alkaline phosphatase?

Same here. Mine trended up over the last couple of treatments and beyond, up to a high in the 190's a couple months after chemo was over. It came down slowly over the next few months.
by Tupelo honey
Wed Sep 26, 2018 12:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: IMMUNOTHERAPY
Replies: 25
Views: 6781

Re: IMMUNOTHERAPY

I used Mushroom Science PSK. Supposed to be the hot water extract process which is the one used in testing.
So far, so good. I took it throughout chemotherapy.
https://mushroomscience.com/coriolus-super-strength/
by Tupelo honey
Sun Aug 12, 2018 8:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: L-Glutamine
Replies: 10
Views: 1028

Re: L-Glutamine

I used Alpha lipoic acid and glutamine from a day or two before infusion to a few days after - prob 5-6 days each cycle. I usually took 15 grams of glutamine powder mixed in water twice a day and 2 - 500 mg pills of ALC twice a day. Plus 100 mg of B6 to protect against Hand Foot Syndrome, which I ne...
by Tupelo honey
Fri Apr 06, 2018 10:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tagamet and MCP
Replies: 5
Views: 721

Re: Tagamet and MCP

Eleda wrote:Is anybody taking Tagmet ( cemitadine ) and modified citrus pectin prior and after surgery to avoid surgery induced metastasis???


I used both. So far, so good.
by Tupelo honey
Thu Oct 12, 2017 9:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Doctors disagree on rectal cancer treatment
Replies: 10
Views: 1081

Re: Doctors disagree on rectal cancer treatment

If I could change one thing about my treatment, it would be to have xelox sooner. I was (am?) seriously worried about the fact that between diagnosis in Sept 2015 and surgery in March 2016, absolutely nothing was officially done to address biopsy-related or natural metastasis. Yes, I took Xeloda dur...
by Tupelo honey
Thu Oct 12, 2017 5:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10011

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

I did not recall Acetyl L Carnitine being an antioxidant; and just checked. I do not find that it is.... Alpha lipoic acid is, which I did not take. I was a bit more concerned about the calcium magnesium combo, as it's been a little controversial. It used to be a standard part of treatment based on ...
by Tupelo honey
Thu Oct 12, 2017 2:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10011

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Thanks, CRguy. Tupelo honey, Did you speak to your oncologist about the l-carnitine supplements? I am wondering because I am reading about Acetyl l-carnitine (this appears to be the recommended form for neuropathy, not the l-carnitine form) and it's an antioxidant that increases ADP production. I'v...
by Tupelo honey
Sun Oct 08, 2017 1:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10011

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

I didn't see half of these messages yesterday for some reason. Tupelo honey, what supplements did you take? I saw your comments a while back on the What Supplements Do You Take? thread but I would really appreciate it if you could repeat here. Thanks! I know it's been officially discounted for a lo...
by Tupelo honey
Sat Oct 07, 2017 4:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10011

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)00018-2/fulltext This one seems to be fairly recent. Although the article itself was a bit equivocal regarding gains vs possible side effects, what I was after was this: "...At 3 years, the absolute gain in the primary trial endp...
by Tupelo honey
Fri Oct 06, 2017 9:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 90
Views: 10011

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

And don't forget Oxi may not be as bad as he's dreading. While I did have some temporary effects during treatment, and some mild numbness of fingertips and crampy toes from appx 2- 5 months after treatment, I did complete the full course of Oxi with no permanant side effects.
by Tupelo honey
Mon Jul 31, 2017 10:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 30-40 Grams of Fiber Per Day !!!
Replies: 9
Views: 1376

Re: 30-40 Grams of Fiber Per Day !!!

I use Nopalina, a fiber mix one of my coworkers has taken for years. I used to be afraid of fiber, convinced it would constipate me after a bad experience with Metamucil and inadequate fluid intake years ago. I tend toward constipation these days since I take immodium every morning to keep my spazzy...
by Tupelo honey
Fri Jul 21, 2017 9:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To port or not for Oxi
Replies: 20
Views: 5462

Re: To port or not for Oxi

I did 6 rounds of oxaliplatin without a port. We decided that if I had to do more we would get a port. My only side effect from IV oxy was a stiff, tingly arm after infusion - only lasted a few days and didn't hinder my daily life. Remember , you can always start with IV and switch to a port if you...
by Tupelo honey
Mon Jul 17, 2017 7:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET Scan Results - More Cancer???
Replies: 62
Views: 16208

Re: PET Scan Results - More Cancer???

Just curious: since he is currently post surgical, do you have him on the cimetidine and / or modified citrus pectin to reduce chances of post surgical metasis?
by Tupelo honey
Mon Jul 17, 2017 6:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET Scan Results - More Cancer???
Replies: 62
Views: 16208

Re: PET Scan Results - More Cancer???

I took glutamine(15-30 grams/day) l-carnitine(1000 -2000mg) , plus oral magnesium (1gram) and calcium (1 gram) the day of chemo (and for 5 days after chemo on the glutamine and l-carnitine). Plus 100 mg B-6 daily throughout. I was able to complete the entire course of chemo with full oxi dose withou...
by Tupelo honey
Fri Jul 07, 2017 10:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET Scan Results - More Cancer???
Replies: 62
Views: 16208

Re: PET Scan Results - More Cancer???

I did take all my rounds of Oxi through the veins as I did not want a port. It did burn for a day or two afterwards each time but is definitely doable.

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