Considering mannose.

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RE: Considering mannose.

by Babis on Mon Jan 21, 2019 10:42 AM

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Hi Baloo.

I picked up the preclinical study about Manose on early December and moved fast to buy it as my Mother (an 8-year CRC patient) has completed 3 lines of chemo and is running our of options.

As she is diabetic on insuline, I have consulted with her diabetologist and got a green light to try while monitorin daily her blood sugar levels.

Started with 2 pills of 500mg daily and moved to 3 pills per day after a while. I can confirm that after almost 3 weeks no side effects have manifested and that blood sugar is under control without any substancial intervention.

I have even found a supplier in China that can provide a 5Kg pure Mannose dust in Bucket for 415$ including international transport.

No CT scans or MRI since she started but she's feeling well and there is a possibility it is helping.

Babis

RE: Considering mannose.

by Baloo on Tue Jan 22, 2019 02:41 PM

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Hi Babis, that's wonderful news, if the mannose is helping! Thanks for sharing.

I figured it was in the probably- won't- hurt/might- help alternatives list  worth trying. I have it in bulk too, I just take it by the teaspoon- 4 grams a day. Tastes like icing sugar. I personally Haven't noticed a reduction in size of those bloated lymph nodes, but I think I do feel a bit better for it. I'm also taking cannabis oil and cucurmin mixed with coconut oil and turmeric powder.

Good luck!

RE: Considering mannose.

by Baloo on Sat Jan 26, 2019 02:53 PM

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So I heard back, I am not eligible for a single clinical trial. So much for that. I have an appointment with the oncologist to see if she has any tricks up her sleeve... I'm not hopeful, it will be some sort of chemo, and the thought of climbing back into that chair is horrifying.

I'm holding out with the help of the Voltaren, not sure if the other stuff is doing anyting or not (cannabis oil, cucurmin, coconut oil and  mannose)  Probably not much.ut I don't think they hurt so I will continue with them.  I don't think they will ever be able to cure cancer. Those of you in remission, you are very, very lucky. Do something epic with your second chance. 

RE: Considering mannose.

by Terric on Thu Feb 07, 2019 09:23 PM

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How are you guys doing with mannose?  I'm taking 2 grams every 3 hours day of chemo.  The rest of the time 2 grams am and pm.  Hoping for results.

RE: Considering mannose.

by Baloo on Fri Feb 08, 2019 02:18 PM

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Terric, what's your chemo regimen?

 The mannose apparently might help the chemo work better  for cancers that have low levels of  phosphomannose isomerase- I don't know if pancreatic cancer falls into that category or not or how you could go about getting tested for this enzyme.   because the cancer cells are already stressed.   But I'm still here and do not seem to be going downhill quickly. I have four large nodules that I can feel in my abdomen. They used to hurt, I would have to take a  tylenol  pill twice daily  (650 mg slow relsease) and rub in Voltaren gel (miracle stuff, that is!) to ease the pain but lately they haven't been bothering me (I've needed no pain killers lately)  and although I have no proof of this my feeling is that the mannose is what's been helping. They do not seem to be growing either which is a relief because they are big enough already.  I've had no chemo since early November.  I'm still recovering from the  side effects of Folfirinox  on my digestive system but the neuropathy is still quite bad. I'm actually feeling pretty good, still weak and unable to gain weight but I don't seem to be getting worse either. I was given 3-6 months in November.....   Good luck Terric I hope you get good results from the chemo/mannose.

RE: Considering mannose.

by Terric on Sat Feb 09, 2019 08:39 PM

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Chemo is Gem/abrx for now.  I found a page describing levels of mannose for different cancer types -

https://www.proteinatlas.org/ENSG00000178802-MPI/pathology

So it looks as if pancreatic cancer is low in PMI which would be good.  I have just started so am not clear how its working but it looks safe and anything that can help would be good.  I'll keep you posted.  Glad that it might be working in your case.  It is worthwhile to visit different oncologists for different opinions - there's a lot of stuff out there that might help.  Maybe check out another for a 2nd (3rd, 4th, 5th!) opinion?

RE: Considering mannose.

by Baloo on Tue Feb 12, 2019 02:19 PM

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Terric, I will be starting abraxane/gemcitabine later this week, I figured, might as well try at least one of them.  I sure hope it's no worse than the folfirinox.Being in Ontario, the protocol options  available to me are extremely limited. I belive the third line therapy might be just straight 5-fluoro uracil, which I already received with the folfirinox, anyway. there's no mechanism to test my tumor to see which drug(s)  from the folfirinox was (were) working, but I don't see why I would go back on that once it's already been ineffective. So this is probably it. 

I did see some more information about that mannose/mouse study, someone responded on a forum who did the math and  figured the mice were being given the human equivalent dose of  8 grams of mannose total per  week ( fed 3x a week, not daily).But I have not read the actual research article myself or checked the math!

As far as I know people given 2 grams of mannose daily for 6 months  for urinary tract infections suffered no serious consequences of the treatment. And I know of one golden retriever given 2 grams daily for urinary tract infections for over a year has had no  (noticable)side effects. The dog has not had another urinary tract infection since.

Mannose seems pretty benign, but the researchers of course are cautioning people with cancer not to self medicate with mannose. I suppose that if ct scans are good and bloodwork is good, it would probably not hurt to continue with the mannose . Mannose does effect the gut microflora as well but it seems more beneficial than harmful.

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