Jane McLelland protocol / COC protocol for STAGE IV members ONLY
Comments
-
Nicole,
This is what I am taking https://naturalfactors.com/en-us/product/bioactive-quercetin-emiq-en-us/
It's so difficult to derive what might happen in a human body from a rat or animal test. I believe the only studies (in terms of supplements) we can take to heart are those that are double-blind, placebo controlled. The problem is that these rarely happen as they are so expensive and there is little financial upside for the manufacturer.
Have a lovely weekend-
Stacey
0 -
I read Jane's book and I plan on rereading it since there is so much info in it. Everything she says makes sence, I had incorporated the berberone, aspirin, vitamin d, selenium from 2 daily Brazil nuts and loratadine before I read the book . Since reading her book I have added holy basil and gymneva sylvestre. I have an appt with my onco coming up and plan on asking him to research the metformin and a statin, I'm assuming he wont perscribe it but its worth a shot. Is there anywhere legit online that those can be ordered wothout a perscription? Also I wondered if you intelligent ladies can tell me your opinion on quercetin for hormone positive cancer ( everything I read says its a ohyroestrogen)
0 -
hi Angelica, if you bring some published studies about the benefit of those off-label medications, you might find that your PP would prescribe what you need....and they would, of course, monitor your health afterwards. Good luck!
0 -
I will do that! My onco was in agreement with me on fasting during chemo because he read studies about the benefits of it so I'm praying he will look into the repurposed meds and perscribe them. Thank you for the reply☺
0 -
Angelica...I just posted a link about a study for that on the previous page.
0 -
Stacey..thanks for the link..to bad that has Vit C in it...I do not want any low dose Vit C.
What treatments conventional have you done and are you currently doing alongside the off labels and sups?
0 -
So I am dropping the Statin and the Propranolol....
The statin mainly because I have a gene that pre disposes me to possible myopathy with statin use and for the past week I have been having weird muscle sensations going on in my shins....not risking that...and also not gonna risk it because in order for the statin to actually block any pathway it needs to be HIGH dose...over 40mg actually more like 80mg ...etc.
The Propranolol because I think there is a chance it is causing inflammation ....and also because you shouldn't really take it with Diprydamole and I just got that script. Plus the DPM blocks more pathways.
So I am considering starting the diprydamole and the mebedazole together and possibly even by next week. Originally I want to wait to add in anything until after my first scan but I don't see these making anything "not" work. Though the DPM I will start very very slowly at only 25mg 1 x a day for the first week...then each week I will in 25mg more until I get to 100mg a day.
And I will also be pulsing the metformin and berberine different as well.
Is anyone here taking the Diprydamole if so what mg and how are you doing?
0 -
Nicole,
Where did you see that a statin needs to be 80mg? COC prescribed 40 mg for me since I had issues with taking 80mg.
0 -
nicol , I tried 100 mg of dipiridamole(1 tablet) - I had headaches with it and probably blood thinning to a degree ( sure added by rivaroxaban and abraxane) resulting in a bllody runny nose.
I swapped it for chloroquine.
With headaches I found they eased off with time and I found it was better to take it in the evening so that I can sleep through them (for me usually started about 2-3hours after taking a tablet).
0 -
Anotherone yea...thats why I want to start at 25mg..and work up. I know a few people that said the headaches did pass. I cannot get the Chloroquine...and I heard if you have liver mets its a no-no bc its very taxing on the liver.
Simone...many of my FB friends on the COC protocol are all being raised to 80mg so long as they can tolerate it...in addition to that I have been in contact with a MO that treats brain cancer and has been on board and wrote many papers even 10 years ago about off labels for blocking pathways and he personally told me that one of the biggest problems with most of the meds we are all taking to block pathways doses are too low and for "SOME" of those meds if we went as high as we would actually need to effectively block the pathway the dose would be too high to tolerate..but he also mentioned to me that 40mg -80mg is the likely needed dose.
0 -
ok, thanks Nicole.
0 -
just checked the dosage of dipiridamole I was taking(prescribed) - it was 200 , not 100 even !
Chloroquine- not sure about it either. Inwas prescribed it twice a week. The study that saulius found was talking about using it every day ! I have written to the study people asking them about it - they have not responded . Chloroquine has retinal damage as side effect as well 😧
0 -
Dear Anotherone, sorry they did not answer:/ Maybe because of holidays and you should repeat your letter? Saulius
0 -
hello saulius
May be I should
I have written to them a while ago , well before holiday though - when you prodded me to - so I do not think it is related to holidays. I think I should, I am just so lazy - it is difficult for me to do all the things I should - even before chemo. May be it was because I had cancer already ( must have been present for years before being diagnosed as I had extensive widespread lesions in my chest). Or may be I am just a lazy git 😁
0 -
Dear Anotherone, you are not lazy - you wrote, they did not reply, so they are a bit lazy:) I'll try to write them too still this week. What is clear from the trial NCT01446016 is that they take 250 mg of chloroquine daily but only during active taxane chemotherapy, and also that the trial is completed, so there must be preliminary results. I'll write them too, and we'll see what happens:) Saulius
0 -
thank you saulius
0 -
Husband11 where are you and how are you and your wife??? I hope you are both doing well.
So a friend of mine told me this about ISO Quercetin:
I posed the question about the new form of quercetin to my naturopath who works with Donnie Yance. Here is her answer:
Quercetin works very well orally the way it is. You don't measure the effectiveness of a natural compound by amounts you find in the blood. Bio-transformation causes them to become new compounds. There is great research even on low dose oral quercetin being effective. (End of response)
Also, one of my professional podcasts just talked about this topic. It's important to understand that our gut bacteria do a lot with these compounds that you wouldn't be able to measure by just looking at how much they get into the bloodstream. It's a complex topic but I always rely on my experts to help me wade through it all. So my end answer is you don't need the other form of quercetin though it won't hurt if you ended up getting it. I honestly don't know if the claims they make about bio availability would make a difference in how the compound is used in the gut and how much of that you would need. But no matter what you end up choosing don't worry. I'm sure both supplements are perfectly good!
0 -
Hi everyone. I'm still following this protocol along with I\L. I had my pet scan today and I'm still NEAD!
0 -
Great news, Simone! Keep on going! Throwing the confetti for you xo
0 -
congratulations Simone, I’m very happy for you!
0 -
Frisky\Olma,
Thanks for the Congrats!
0 -
Wonderful news about the scan, Simone!
0 -
That is the way we want it , Simone. Congrats.
0 -
Thanks JFL and anotherone!
0 -
Awesome Simone. Congrats.
Anyone taking MSM here? I am going to add it in I think...I just have to research if it's hard on the liver.
0 -
Wow, dear Simone, that is just great! Saulius
0 -
Thanks Nicole and Saulius! I pray that we all remain stable of NEAD this year.
0 -
JFL & Simone - Is Dr. Mendez still your doctor at COC? JFL, is the communication improving with her? I have been scheduled with her to start the protocol this week. I've been holding off on starting the protocol with COC because I am a patient with Dr. Rosenberg in Florida. My hour long skype conversation with him was very informative. I asked him about every drug I could think of from Turkey tail, Vit. C infusions to the COC drugs and Janes recommendations. He gave me his opinions on everything based on studies. He will prescribe me any of the COC drugs even though he is not a fan of the statins due to side effects and does not agree with taking doxy. My consultation with him was $550 and very worth it. The problem is that communicating with his nurse to refill prescriptions is slow and occasionally I have to send more than one email to get a response. Also, Dr. Rosenberg does not follow what I do; however, I can make additional phone call appointments with him. This cancer business is already so time consuming and frustrating. I don't need to work so hard to get the meds I need. Also, depending on where I am with my insurance deductible, the Meben can be expensive. Plus my insurance only fills 6 days worth at a time. As soon as I get my 6 pills, I have to put in a new order immediately and make another trip to the pharmacy. I hate to fork out another $800 towards COC just to more conveniently get the drugs I want, yet I need this process to be more simplified and feel it may be worth it.
0 -
KarPC my insurance will only do 3 Mebedazole pills at a time...so after I get the 3...a day later they order 3 more...etc...so what I did was...i let them build up till I had like 22 then I started taking them..but I will not take them everyday...I will do 4 days on 3 off and do 200mg a day...because a few people one researcher and a Neuro Oncologist that I contacted both said to up that dose to 200mg...
0 -
Hi KarPC,
I still have Dr Mendez. I have my appointment tomorrow. I haven't had any problems with her, but I haven't really had any questions for her either. JFL had some issues but I think she was able to change ONC. It is very easy to get the scripts from COC. One thing to keep in mind, besides the initial fee they require follow up appointments every three months. Those cost $295. Then you'll get three more months of pills.
I was thinking of requesting an appointment with Dr Rosenberg just because I am tired of researching what to take to block all the pathways. I've seen quite a few posts recommend ing him. Did he provide recommendations for what supplements to take to block pathways? And the recommended dosage?
Nicole,
I believe COC ups the dosage if someone shows progression.
0
