Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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it’s primarily a drug given to heart transplant patients to prevent rejection...didn’t do anything for me, and I was ‘genetically matched’ to it...
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Im sorry guys...
I still don't get the big deal here?? This was a drug people have been using and know about...why is the fact that its now generic a big deal what am I missing? I feel stupid but I genuinely don't understand....0 -
The generic version should me much more affordable. People who have to pay for it out of pocket, tight purse strings by someone overseeing it - such as an insurer, or in a socialized medicine country like Canada, UK, or Australia, more people might be eligible to use it. The CD 4/6 inhibitors for example are so expensive, that no one can just try it. They have to strictly meet with the criteria under which it was approved in Canada. That is first line treatment of metastatic cancer, that hasn't spread to anywhere life threatening. That rules out many women, and its all because of the cost. So, I am pleased there is a generic of everolimus, and hope someday there is a generic version of palbo / abemaciclib, etc.
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Here in Manitoba, we were told that targeted therapies, like Everolimus, palbo etc. because of the cost, you are entitled to use one only during your lifetime. So if you get palbo and fail, or everolimus and fail, that's it. No second chance for you to try another, strictly because of the cost.
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It's not just in Canada, either. I am on a Medicare Part D plan, and I don't qualify for assistance from Pfizer or any of the foundations due to my income. Therefore, I am paying exorbitant costs for co-pays for drugs like Ibrance, etc. even after my Part D insurance plan pays a huge amount of $$ to the drug manufacturers. So count your blessings if you can get a generic drug and it works for you.
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Gotcha thanks for explaining that.
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I’m on Everolimus- brand name and it is more expensive than palbo. A new study came out saying the PFS after failing a CDK4/6 was 11-12 months- so I hope you can get it in Canada. My pharmacy says it cost $17,499 per month, and someone told me their cost was $24,000! Mine is covered however, and I heard that there is patient assistance money available- but, I don’t know the details. Since the mouth sores have been mostly prevented by a steroid mouthwash for 2 months- this drug has become a popular second line drug after failing a CDK4/6 inhibitor.
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Thanks Nkb.
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I guess I should put this here since it is about liver..I will cross post in Liver thread.... My IR called yesterday...he looked at my baseline CT scan that I had for the start of the Xeloda..he said the area of the 2 tumors that he cryoblated is definitely smaller and this is good and that the tumors look to be dead nothing looks live. He said the other remaining tumor that he couldn't get has not grown. So that means the month I was off the meds it didn't grow YAY!!!
I am assuming not with X I will not re-scan until Feb or March..unless we switch treatments...
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That is fantastic news Nicole. I am so happy for you!
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Nicole,
Great news and exactly what you want to have happen!!!
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I have a very important question...magnesium and calcium, supplements—which I consider essential— shouldn't be taken when on doxycycline
...what are the COC guidelines regarding thus? Help?
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Frisky,
Not COC, but just looked at Medline Plus and it says this about those supplements and doxycycline:
- be aware that antacids containing magnesium, aluminum, or calcium, calcium supplements, iron products, and laxatives containing magnesium interfere with doxycycline, making it less effective. Take doxycycline 2 hours before or 6 hours after taking antacids, calcium supplements, and laxatives containing magnesium. Take doxycycline 2 hours before or 4 hours after iron preparations and vitamin products that contain iron.
So maybe just a matter of timing?
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Thank you so much BevJen...that makes sense! I will follow those guidelines....
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Nicole, wonderful news about your scan!
Frisky, I take calcium and was told there is no issue with that. I do not take magnesium. However, good to know I should take the doxy spaced apart from calcium.
I recall when I was on Afinitor (everolimus), the manufacturer has a copay program in the US where they pay all of one's copay over $25 or some similar amount. The manufacturers of Halaven (eribulin) and XGeva (denosumab) do that too. And likely other drugs. The only qualification is that the patient have private insurance (some government-provided insurance may not be covered either although I can't recall exactly). No financial qualifications, it is available to everyone with private insurance.
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Thought you all might want to hear about this it is a post from FB and just a couple of comments I thought to be interesting...sorry it doesn't seem to be the best news...REF Mebendazole/Fenben plus Janes Protocol:
Has anyone heard about this? Chris Wark of "Chris Beat Cancer" fame and founder of Square One, a popular FB cancer group on his conference callthis week he advised against Fenbenzadole, the dog dewormer, b/c there are new studies that indicate it initially slows down the cancer growth but w/in a few months it begins to explode uncontrollably. He recommended natural Artemisinin instead.
Anyone know what study he is referencing?
Comments?"Can I ask which group it is? My liver exploded with liver mets 6w after starting the Fenbendazole protocol after almost stabile disease for 3.5y. So not a big fan either."
"Heidi Osterman Thanks. Yes I'm a fan of Jane's approach and have been on multiple repurposed drugs for years.The timing was very peculiar. My disease changed at that exact point from 3.5y quite stabile (mainly NED) to aggressive.Never had disease in liver/outside thorax before that.
At the time the only thing I changed was adding the Fenbendazole protocol, /Mebendazole and an antibiotic that I had had before. Later I found indications that Fenbendazole (and Mebendazole) induce IL-8 that can induce the formation of liver mets. So seems that things could add up."Then someone posted that Jane replied to this saying this:
" I spoke to him about FBZ as he was concerned that he was seeing a lot of folks initially do well then get worse. I told him that fenbendazole makes autophagy more active so you need to take an autophagy blocker at the same time. I suggested artemesinin (as he does not like to suggest drugs, eg loratadine, clemastine, chloroquine, dipyridamole) but this needs to be taken with FBZ not instead of as you need to block both pathways together (at least). Check out my Metro Map and read my Piccadilly Circus theory." "A combination of drugs is important for EVERY CANCER as I explain. Cancer reroutes itself so you need to block more pathways".
But then we see someone posted this:
I'm not sure that adding Artemisin (or Chloroquine) to Fenbendazole will be enough. I took this exact combination and had severe progression in liver after 6w. See my comment elsewhere in this thread.
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Thank you JFL and Bev and Husband11
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it makes you think whether taking all the pills required are really helping or hurting. I'm blocking all the pathways, but I always worry if it is enough.
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hi All, that you for posting this disquieting yet useful information.
One thing we know for sure, the majority of BC patients are not on FZ and yet 30 % will progress to stage 4, usually with Mets to the bones and liver.
My personal experience is that for the past four years my metastatic cancer was detected in the bones only and then it was in the liver, but I have ILC and it's more likely, considering the stories we share on these boards, that the lesions were there all along, just not visible yet.
If Joe's was the only success story, we could easily blame FZ, BUT that's not the case...there are testimonies of people being healed from pancreatic cancer, which is known to be deadly...
We have to ultimately do what we deem right, but, let's face it, progression in the liver is unfortunately what happens to people with cancer...it will progress with or without FZ...
One more thing....the quantity to be taken is so minuscule...I truly don't understand HOW it can wreck so much havoc...when most people are on medications that are known to have terrible consequences to our health...okay I rest my case now....will wait to hear a counter argument....
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Frisky.... I definitely agree with some of what you said. My thing is that we cannot deny if people are clearly progressing on Fenben/mebendazole... Even Jane said that will happen if you don't block the other pathways and clearly that MAY not work for everyone... I think the thing that stands out to me is the induce IL-8 that can induce the formation of liver mets. Also...another person said:
we saw growth in liver mets for the whole 26 weeks that hubby took fenben. We were also blocking every pathway in the metro map and still saw growth. Stopped it now.
And Jane said : There may be other gaps you are not blocking or simply that the tumour load is too big for the off label drugs and supplements alone. You might need chemo or radiotherapy as it is the combination that works best. Not medical advice
What stands out to me there is "the tumor load is too big for the off label drugs and supplements alone"...There are no guarantees that Janes theory already covers all pathways. There may likely be pathways not covered or not sufficiently blocked with established repurposed drugs.... Also we must remember ...Jane and Joe both did Immunotherapy....this to me (and just my opinion) is that it makes a huge difference.
I am editing to add in: My personal opinion and this is not based on any article published this is my personal opinion for me....I believe I NEED and WANT the chemo to kill my cancer...THEN I want the off labels and repurposed meds to kill the CSC and to prevent recurrence. That is how I believe it can work and how I am praying it will work for me. This is another reason why I really am just not "feeling it" about the Xeloda...I PRAY I AM WRONG!!!! but...I wont be surprised if I am not. I found out at my appointment friday that my MO is not waiting the traditional 3 months to scan and see if X is working she is scanning after 2 months so based on that I have decided not to start any new meds (the IVC, Fenben/Mebendazole/Low Dose Naltrexone) until after the scan because I need to know how the Xeloda is doing on its own...I will still be taking the Statin, Magnesium, K2, Claritan D, Probiotics,Berberine, Metformin, Melatonin, low dose asprin and maybe the Propranolol. To be honest I am glad she is not waiting the 3 months to scan because if God forbid its not working...bring on the Taxol's. I only pray my kidneys tolerate it. If they do and we kill all this SH&* Cancer in my liver and bones and body then I am going to do the IVC to start the rebuilding of my good cells and kill any remaining CSC at the same time.
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Sorry Nicole. I missed your post about the news on your scan. That's great news!
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Thank you Simone
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Nicole, thanks for posting the fenben/meben posts from the other website. Disappointing but good to hear both positive and negative stories.
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Nicole do they explain how they know they are progressing from the FZ per se and not everything else they are taking? How is one to know?
And How do we know that these people aren't subverters and provocateurs....??Most cancer drugs come with serious warnings and we know they will use the liver or kidneys to be excreted... let's face it all our fears and terrors are never about the cancer but the therapies we HAVE to undergo....if people knew they had cancer they wouldn't wait till stage four to be diagnosed...
I agree that conventional treatments must continue during the COC and that the off-label medications might not be sufficient, however, the reason for taking all this complimentary stuff is because we all know the conventional treatments simply don't work...they have no cure for cancer and they seem to get further and further with the SE of new medications....such as piqray....or whatever it's called...people can't stand the SE.
except for Judy we know of no one has survivedMB cancer with Immunetheraphy, and they don't even know why Judy survived and others died...
I totally respect your gut feeling regarding Taxol as being a powerful drug and I hope it works well for you...
I fear the SE of that medication more than trust it's efficacy...but I agree that among the arsenal of nothing, it's something....I wish I felt better, but right now all my reasoning is being colored by “the emperor has no clothes" theory
I can't help but perceiving MOs as ACTING as doctors...my faith in their knowledge and ability to help us is at an all time low...I wish I felt differently...
Here's a little comedy for this Sunday morning...enjoy!!
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Hello Everyone, Just trying to find out if this post will post. Yesterday, tried to post three times and they would not go thru. So I tried a PM and that wouldn't go through either. If this posts then I will delete it.
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Frisky,
Just for clarification on the Judy thing and her immunotherapy success -- first, her immunotherapy was of a particular type where they removed her cells, revved them up, and then returned them to her body to fight the cancer. NIH is still conducting this trial. At the time when she was treated, I believe that the investigators did not know that CAR-T type immunotherapy causes something called cytokine storms in your body, and these are very difficult to deal with. I attended a seminar talking about different kinds of immunotherapy and they specifically discussed this. So perhaps Judy just had a stronger constitution than others who participated? To my understanding, a lot of the immunotherapies now being investigated for breast cancer are not CAR-T but rather direct infusions/injections of a type like Keytruda and other immunotherapies. So I guess I'm just posting this on the glass half full theory that progress IS being made on immunotherapy for breast cancer -- they just haven't found the right one for everyone yet.
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Frisky.. I believe those people that posted the progression are legit people who are all on board with Fenben/Mebendazole and wanted it to work..why do I think this...because I have read many many of there other posts going weeks and months back. I understand being skeptical but I am not...They are extremely disappointed. How they know it was the fenben...because some of them were only doing Joes protocol not the COC...and even Jane admits that Fenben and Mebedazole can do that...it's not a secret. Remember also Jane didn't even take that....
Frisky I partially agree with you on conventional treatments don't work. Ok..so listen...Chemo KILLS cancer..there is just no doubt about that...it does...(and yes we know it kills good cells too, but we are not talking about that right now) So...it does kill cancer...but what it doesn't do is kill cancer stem cells...which cause metastisis....thats where the unconventional off labels, supplements etc come in. TO me...a person needs BOTH. Unconventional and Conventional. Steve Jobs went totally holistic and he didn't make it...and as we all know he is just 1 example. We all know if being Vegan...or just using off labels , repurposed drugs killed all cancer well there would be people a lot of people that are cancer free right now...but there are not. Joe and Jane both used conventional with unconventional...and by the way...Joe openly admits he ate everything he wanted...so even that didn't play a roll in his remission. Also we need to remember that neither Joe or Jane had breast cancer..and what I am discovering is that BC is a BEAST of it's own...it can morph into other things and it's just in a class all by itself I mean IDC and Lobular just to name 2...totally different right...yet...wait...someone could be like me IDC with Lobular Features...ahhhh so what works for me may not work for you but yet ..it may because I have Lobular Features... .and any other stage but 4 has a real longer lasting shot at chemo staving off the cancer longer..but us at stage 4 it's a whole other ball game. We do need to do what ever we can but the things that "prevent" are not the same things as trying to get rid of current Metastatic disease...this includes with regards to off labels, supplements and repurposed ...etc...I am hoping that the more we Stage 4'ers...do...the more we see and share with each other ...is the way...the way to finding what might work and what might not.
I have to also say and this is just my experience but I love my MO and I truly in my heart believe that she wants to save my life and if I didn't feel that way I would find another MO...I would. I believe she believes these drugs all help to kill cancer and she is not wrong in that ..they do...but does she have time to go researching all the stuff I am everyday about repourposed drugs and supplements...no not with seeing patients etc...I bearly have the time and I am home all day it's daunting at times..literally all consuming and stressful I couldn't imagine having to go treat patients all day from 7am till 6pm then go home and take care of my family when would I have time for this research? I personally wouldn't so I really don't fault my MO for not recommending the best supplements to help prevent cancer or to help my body...she to me, is doing the best she can and I really am just grateful that these drugs are even there to try. Lets also remember they are just human too
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I think the CO C and Joe's protocol do work, just not for everyone. It seems like a lot of people on Joe's website are starting the protocol to late. I ended up leaving his fb group, there were just too many sad posts. I still do worry I am not taking enough supplements. I'll keep track of my TMs and add more Pills if they start to go up again.
Nicole, I saw someone was using Hibiscus extract instead of Garcia cambogia for blocking the ACLY pathway. Have you seen anything on that in you research?
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I edited my post simone...to add more in... Not about the hibiscus...just in case you want to read it. No I have not heard about the Hibiscus..right now I am in the Artemisinin research and the iron etc... I actually wouldn't need the iron with it to work because my Ferritin is normal. Thank goodness too because Iron makes me consitpated...ughhh.
Yes I agree with you some people start way to late and they post on Joes page that it didn't work..but I have been asking each person when I see those posts what the situation was and I personally do not take those cases into account.
You are lucky you have TM's that move...I do not so that would not work for me.
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And now they are saying.....that intermittent fasting is bad for stage 4 cancer as it does not inhibit Autophagy.....I can only find where Jane says "Not for sustained periods. 2 or 3 days max imo"....so I believe that does not include intermittent fasting each night 14 hours...
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