Encouraging Article

[Staysha]

I found this interesting and encouraging. What do y’all think?

Hugs,

Stacy

news-medical.net/news/20200...

[Hidden]

Stacy!! Wow!?

I always click thru to "new news", e.g. allegedly great results announced, but often find that it's like a PR newswire type announcement from some biotech startup that is just looking for funding...

...But this does seem potentially different?

Here's a related link to an NCBI study:

ncbi.nlm.nih.gov/pmc/articl...

This certainly sounds encouraging! Yet....yet....we've not heard about it from docs, the big symposiums (symposia?), etc.?

Is it possible that since this is "just" an antibiotic, likely long ago out of patent protection, and vitamin C, it's not getting the attention it deserves since no one's executive bonus will skyrocket? Has hyper-capitalism rotted our core this deeply (wait, of course it has! ).

I'll admit that I read the synopsis and tried to read the details, but it's too late in the day for me to drink coffee, so I'll try to re-read it tomorrow....

...Thanks for sharing! If upon a re-read it still looks very promising, I'll come up with some next steps for getting my docs' thoughts on it...

Thanks for sharing!

Lynn

[Staysha in reply to Hidden]

Great Lynn. I value your opinion and look forward to what you come up with.

Stacy

[Hidden in reply to Hidden]

Lynn — I always appreciate your thoughtful analysis. I’m curios to know what you discover as you take a deeper look. If it’s meritorious I would like to ask my oncologist about it.

Thanks so much

[BluHydrangea]

Very exciting. Our treatments give us all hope that we will live to see new meds for this awful disease!

[Hidden]

Hi Stacy,

Thanks for sharing this article. I've been taking doxycycline off-label since last year. I alternate it with mebendazole each month, and take a number of other drugs and supplements to tackle this disease too.

Sophie

[Staysha in reply to Hidden]

Hi Sophie,

If you don’t mind answering...

Are you getting these drugs through the COC or is your onc prescribing them?

:)Stacy

[Hidden in reply to Staysha]

Hi Stacy,

I started off getting them from the COC clinic, but now my integrative doctor prescribes them. Once he writes the prescription I get some from Gould Pharmacy (his office is downstairs from the pharmacy) and the others for free. My oncologist is not interested in my off-label use of drugs, so I don’t talk to her about it anymore.

Sophie

[Iwasborntodothis]

I will ask Dr Wendt about this on Monday - interesting

[Staysha in reply to Iwasborntodothis]

Let us know what your dr thinks. I’m curious.

Stacy

[Iwasborntodothis in reply to Staysha]

First, know that I have known my doc since 2011 when he was in private practice and treated my sis, I know him pretty well and we have a good rapport. I said that the ladies on my site (he knows what I mean by this) were talking about this and he said he had not heard of it and it wasn't on his radar. He chews on stuff so maybe he will look it up more. He attends all of the conferences so I know he is a data nerd. He also gave me an eye roll about vitamin c injections so.....sorry LynnFish, that went nowhere.

[Rhwright12]

I thought that it was part of the COC too...Glad to here something very positive is coming of it! 😀💕

[Hidden]

Hi Ladies,

Just a follow up ...

(btw, I think some might put too much faith in my ability to read/comprehend scientific studies!! Let's never forget that I literally failed high school biology and had to drop chemistry to avoid the same fate! This is true. I was a "troubled" youth... )

...but I am tenacious and do my best to look up all the words to try to glean something...

Re-read the original material shared, then found a few more related publications, some easier to get through. Here are a couple...

ascopubs.org/doi/full/10.12...

europepmc.org/article/med/3...

My overall, loose understanding is that this (ABC, i.e. "antibiotics for breast cancer") was tested vs. earlier stages, so don't know if that's core to the premise, maybe about preventing mets? Or is it possible that this could help with mets? I don't know...

It seemed positive, and in the one "negative" thing I read it was comparing this treatment to like Taxol (I think...this is from memory), where it underperformed. Okay, fine, because we're not concerned about finding the single best treatment, we're looking for "another" weapon to add to our arsenal...

But it does all feel early still and, again, for me the sticking point was re: early stage vs. mets...BUT, I'm going to save the article and will try to remember to look into future developments at some point because -- and I think this is the thing that's different -- it makes use of drugs that are already approved for other uses, antibiotics, plus vitamin C. It's possible (admittedly very unlikely) that, at some point, I would bring it up with my doc as an "off label" option? Especially if it turns out that it might be effective at Stage IV, too? Again, very unlikely, but I do find it encouraging...cheap and easy.

Lynn

[Gizwil]

I also take doxycycline every other month from COC. I am wondering if maybe I should be taking it continuously along with azithocycline. I also have Vit C infusions every month (per Jane’s book), I am going to bring this up with my COC oncologist. Unfortunately I am not sure that COC is that adventurous. But there is no harm in asking, especially if I refer her to the articles you have armed us with. Thank you Staysha and Lynnfish 😌

[Hidden in reply to Gizwil]

Gizwil, this is so interesting!! So this COC protocol seems to agree with the study (to at least some degree) and is using it vs. Stage IV! What country are you in? If in the US, where do you get this treatment?

[Gizwil in reply to Hidden]

Lynnfish, I am not sure if my COC follows Jane’s protocol exactly but I know I had to contact the European doctors to find out about the COC branches here in the United States. I was so shocked to see you guy talking about COC, it would’ve saved me a lot of time and effort if I found you first. When I mentioned Vit C Infusion to the nurses at COC they were able to get dosages for me but I have to get my infusions locally. That is why I feel they might research azithocycline for me. I am not sure where my oncologist at COC lives, I think Ohio. My previous Oncologist was in Florida. We do virtual calls quarterly. The headquarters may be California but I’d have to check that. They are now prescribing fat soluble acetaminophen (imported from Europe) for pain. It is a lot more user friendly to the body. Anyway if I get anywhere with the antibiotics you guys will be the first to know!

Just checked, COC is located in Rapid City, SD. And my new pain med is flarin.

[Hidden in reply to Gizwil]

Gizwill - Thanks so much for the info! I just went to their site and scheduled an initial consult for Tuesday (but they want a letter from doc, summarizing treatment...might need a bit more time to get that...).

I'd looked into this once before after reading about it here, but then backed out of the appt, I don't remember why...But I'm now thinking, why not try it? I do all sorts of things with less scientific backing in the hope they will work...

...Plus, my secret hope is that, if this works well, maybe I won't have to exercise any more?

A big "Thank you!" to you and Staysha..If this change happens to add any months to my life, I'll dedicate one of those months to each of you!

...Off to bike for an hour...

Best,

Lynn

[Gizwil in reply to Hidden]

The price may throw you off. It is $300/quarter. You also need to send blood work and test results before each meeting. Drugs are $60/quarter plus any new drugs like the oil soluble acetaminophen which is close to $200/quarter. I would like more personalized time with my assigned oncologist but they usually allot 30 minutes which is more than my regular oncologist gives me. But they do have nurses available all the time and they do get back to you quickly. Good luck, I do find them helpful and maybe are adding some time to my life!

[Staysha in reply to Gizwil]

I too called COC several months ago and then backed out before the consult. I thought I remembered the initial consult was like $900 plus the qtr costs and drug costs. So I then thought I’d put it off until I had major progression. That’s probably stupid. I am currently doing the fenbendozole and a few other things.

Lynn, please share your experience when you talk to COC dr.

Stacy

[333Stevens]

Really encouraging - I hope they rush this one through! So important to find other medical interventions that Onc's are willing to prescribe!

[Hidden]

Hi All -

What a great topic re: the COC -- there are definitely at least two sides to this discussion.

A friend of mine - a nurse - who's opinion I value very highly told me she thinks it's a scam.

I don't (yet) know if that means it's a "financial scam", e.g. so much money to pay for meds that should cost just a few dollars/month, or a "medical scam", meaning either a) they won't have any positive effect at all, or b) they'll possibly have a negative effect, medically.

I will go into the call with them and do any subsequent research trying to get answers to these questions. Will def report back!

I do tend to be full of enthusiasms re: various things (not just related to cancer! ), and am usually in the camp of "if it might help/won't hurt", then why not?

And I view the approved/sanctioned protocols as a occupying a small space among the possibilities of what might help. It takes a lot of resources to get the medical stamp of approval and there are likely many other small things that can tip the scales a bit, which is all I ask for...

I also fret less than many others about being scammed, i.e. shame on the scammer, not on me.

BUT I also don't want to support any entity (=people) that profits from selling based on ill-founded claims or exorbitant pricing (...well, I guess I do support Pfizer's exorbitant pricing...), so will go into this with a skeptical eye...

But the credible study that Staysha shared renewed my interest in this COC protocol because of some of the commonality.

Again, will report back here on what i learn...

Thanks for the very thought-provoking discussion!!

Lynn