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by Tupelo honey
Sat Nov 17, 2018 9:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Extrusions vs Nuggets
Replies: 14
Views: 419

Re: Extrusions vs Nuggets

That's great. Oatmeal has both soluble and insoluble fiber. I think fiber is the key. While I believe the senna leaves in nopalina are helpful for ME, I have a tendency towards constipation(nuggets). If that's not an issue, fiber alone is prob helpful no matter what the source is. I was amazed at th...
by Tupelo honey
Fri Nov 16, 2018 10:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Extrusions vs Nuggets
Replies: 14
Views: 419

Re: Extrusions vs Nuggets

.... I'm liking Bob's recommendation, in another post, for dark chocolate. Even if it doesn't help in my case I won't turn down an excuse for some chocolate.. the darker the better... My mother in law swears by coconut macaroons for ibs and diarrhea. Another delicious natural remedy to try. Like th...
by Tupelo honey
Fri Nov 16, 2018 1:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Extrusions vs Nuggets
Replies: 14
Views: 419

Re: Extrusions vs Nuggets

It's an easy morning routine. I mix the Nopalina and Miralax together with water or juice, and take an Imodium with it. Over time, I've dialed back the quantities as much as I can for personal effectiveness. I used to use the 2 tablespoons of Nopalina as suggested on the package, but for us rectum-l...
by Tupelo honey
Fri Nov 16, 2018 11:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Extrusions vs Nuggets
Replies: 14
Views: 419

Re: Extrusions vs Nuggets

I struggled with this for a year or more, constantly using Colace / Senna / Immodium and never found an answer till I added 1-2 tablespoons of Nopalina (fiber that contains senna) every morning. With fiber for bulk, I'm able to control consistency (Extrusion vs. nugget) with a daily Miralax dose - f...
by Tupelo honey
Tue Nov 13, 2018 8:00 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update from Rikimaroo
Replies: 44
Views: 4342

Re: Update from Rikimaroo

A regime of Nopalina, Miralax and Imodium, while seemingly counterintuitive, was the combination that finally gave me a normal life back after a distressing year of clustering, constipation and some bizarre urge to constantly "push". I take a mixture of 1-2 tablespoons of Nopalina, and 1/2...
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: 586

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: 7577

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: 1240

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: 760

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: 1127

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: 10814

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: 10814

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: 10814

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: 10814

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: 10814

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.

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