Docs who prescribe mebendazole and metformin

[Sueforshare]

HI! I am currently taking letrozole for metastatic breast cancer. I am also doing the COC protocol, but only with mebendazole and metformin. Just curious, are any of you getting mebendazole or metformin from any other docs than COC?

Thanks! Sue

[Lynn-in-California]

No. The use of metformin for blood sugar control and mebendazole, an anti- parasite medication, is ridiculous unless you have diabetes or parasites. I had to Google "COC protocol" since you didn't define it. It is not a researched-based therapy and it is not on any published standard of care for breast cancer. Anyone who asserts that sugar feeds cancer is full of baloney.

[104shopgirl in reply to Lynn-in-California]

Lynn, Did you have to be so harsh and closed minded? That was plain mean. There is a big world out there with lots of discoveries happening. I believe you owe this woman an apology.

[Tealkia in reply to 104shopgirl]

I agree, before you make statements like ‘sugar feeds cancer is baloney’ you should make sure that you know what you’re talking about.

[Lynn-in-California in reply to 104shopgirl]

Cancer myths and misconceptions spread misinformation and I do not think that is helpful for anyone. Also, in the United States, treatments that are not research based with proven effectiveness and on a approved medical protocol list are never covered by medical insurance. So, when someone gets a cancer patient to take unnecessary medication, it is worth wondering if there is a profit motive. Who is benefitting from the sale of the medication and who is paying for the medication? If the doctor is committing medical fraud by submitting false claims to get the insurance company to pay, obviously that is bad. Or, if the patient is paying out of pocket for unnecessary medication, that is bad, too. Also, should we not wonder if it stresses a cancer patient's body to take diabetes and parasite medication that is not needed? Maybe. My intention in sharing my response to the original poster is to be helpful, not mean. I have a Ph.D. from UCLA and I am a professor emeritus with lifetime academic library access privileges. I read actual cancer research reports all the time, the kind published in peer-reviewed journals, not just those open-access studies indexed by Google. My adult son's life was saved because he was part of the 2022 N+ICE stage two clinical trial for Hodgkin's lymphoma. I am 64 and a have been extremely fortunate to have survived with terminal, metastatic stage four breast cancer almost 8 years on 125 mg. Ibrance plus 2.5 mg. Letrozole. (My breast cancer journey started in my 30s, but I became stage 4 in 2016.) I am grateful to have benefited from research-based treatments. Information and research are extremely valuable to all of us! If this so-called "COC protocol" has utility, that would be great---but it would need to be determined using double-blind, random-assignment research methods with informed consent and decent numbers of research subjects. In the meantime, it can only be understood as an experimental/adjuvant type treatment. Is it mean or is it helpful to warn that someone might be getting sold snake oil? Since this is a public forum, I think it is helpful to highlight such concerns rather than normalize the idea that taking off-label diabetes and parasite medications is a good idea.

[jantexred in reply to Lynn-in-California]

Lynn being a PHD, I am sure you can read this research article:

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

Repositioning of Antiparasitic Drugs for Tumor Treatment

These drugs are inexpensive and therefore a risk for the pharmaceutical companies that manufacture drugs for cancer treatment "The cost for Ibrance oral capsule 75 mg is around $16,839 for a supply of 21 capsules," per DrugStore.com. Pancur Fenbendazole is $10 for 3 packages of 222mg, the amount people are using to treat their Cancer.

There are many studies being conducted on alternative drugs because due to Social Media, there are so many positive testimonies on these different alternative therapies that any critical thinker, with cancer will find hard to ignore. COC Protocol has such testimonies. Joe Tippens Protocol is another. Both have Facebook pages you can check out.

We are all different and must navigate this journey the best way we see fit for ourselves. I think most women on this board are quit informed on treatments both scientific and alternative. I would hesitate to call anyone's choice wrong. After all it is their Ship they are sailing, and they are the Captain. IMHO

[Praising in reply to jantexred]

agree. Going to be in an observational study with 5 cancer centers using repurposed drugs.

[Sueforshare in reply to Praising]

Interesting to hear that. I know what study you are talking about. I may join too. Have you chosen a clinic from the list of 5?

[Sueforshare in reply to jantexred]

Thank you for supporting cancer patients in their journey to find the treatment that is appropriate for them personally. No matter which path we choose, we all need kind and sensitive support. This is truly a difficult and scary road to be on. Bless you on your journey.

[TammyCross in reply to Lynn-in-California]

I am with you in being a researcher who reads the clinical research literature, appreciating true experimental designs, and having skepticism about alternatives. A couple of reservations, however. Metformin has been explored as a treatment for cancer. The studies were not well-designed, but there are indications that there are mechanisms of metformin that could inhibit tumors (not necessarily breast cancer, but some of those studies did look at mbc -- and one found that it may be effective for HER2+), such as mTOR inhibition, like everolimus (Affinitor). I do not think the conclusion is that it is an effective treatment for mbc, but it has been found to be worth exploring further. This overview that made that recommendation was published in Feb. 2023 in the British Journal of Cancer (I have no idea if that is considered a top journal): nature.com/articles/s41416-...

Second, my very conservative oncologist once said mildly, "There is some indication that sugar has a role" or something like that. She did not think I could control my cancer by eliminating sugar, but the research does suggest it may encourage it.

The surgeon who operated on my original tumor said that breast cancer is becoming more prevalent because of our degraded environment. Personally, I have been exposed to many carcinogens in my lifetime (pesticides used on plants I consumed, before I realized what they were using, and probably hormones in meats; asbestos; I worked near the WTC after 9/11; leaded gas; the early birth control pill; etc.). Not sure why I added this.

I tend to get a little irritated at alternative medical approaches. All my docs and the oncology nutritionist I consult strongly discourage supplements -- except when blood tests show that I am low in something. One I was taking at the recommendation of a dentist when I had ONJ turns out to cause liver damage in high doses. My friends who did strictly alternative medicine are dead. Still, I do try, perhaps not successfully, not to be adamant about my (well-informed conclusions.

[jantexred in reply to TammyCross]

Tammy, I think you are correct in that some supplements cause adverse effects, but you have read the adverse effects on the traditional treatments. I took Ibrance, and the side effects published per trials are really bad. I did well on Ibrance no side effects. Not everyone body is the same and all react differently to treatments would you not agree? The point being made, is where there is good, there can also be bad, depending on the individual body chemistry.

[TammyCross in reply to jantexred]

Those are not equivalent. With Ibrance, the research (carefully controlled clinical trials) show that for most people with metastatic breast cancer, the benefit outweighs the harms to our bodies. Almost all if not all cancer treatments (evidence-based) have toxic effects as they target the cancer.

Supplements are unregulated (studies show that even reputable brands have varying amounts of the "active ingredient") and most have not been tested in controlled trials -- unless they looked like they might be really effective, or they interact in negative ways with the proven treatments. They do not have the same backing of research. Except the research my oncology nutritionist cited of liver damage. Her recommendation was that getting these beneficial vitamins and nutrients from food was a good thing, but supplements have too high a concentration -- without knowing their effects. I am looking forward to the results of some studies that are looking at the possible benefits of really high concentrations of some of them on mbc.

True, we react differently in terms of both tolerance and benefits of the standard of care mbc treatments. Nonetheless, they have been shown to significantly increase PFS and OS, with decent effect size -- not for everyone, but for enough to reach statistical significance.

Testimonials are not research. Anecdotes are not science. There are all kinds of testimonials for questionable treatments or the lack thereof (e.g., by anti-vaxxers). There was a fad for a while for "surgery" that did not involve actually touching the patient. A former colleague developed primary breast cancer at the same time I did but was drinking some expensive red liquid from China rather than having any treatment. She handed me a brochure with testimonials and tried to sell me a bottle for $70. It was surprising, because she also had a doctorate in social psychology and should have known that this "evidence" was not persuasive. Her cancer progressed, of course. Mine was supposedly gone for 11 years. After she wound up in a nursing home, she started taking Ibrance and her cancer responded amazingly well. Also amazing, she is still alive. She told me all her friends are angry at her for not treating the cancer in the beginning.

So that is where those of us trained in scientific method are coming from. Just explaining, not condemning. I wish more people had that background. I am sure we could learn more from each other if we pooled our empirical knowledge.

[Kerryd22 in reply to TammyCross]

The sugar debate is just that -a debate. Our brains need sugar to operate effectively according to my oncologist. And I like it. On the subject of alternative foods I only use items that has scientific research published in reputable databases ergo not facebook, twitter or any other social media but the other day someone here said that dark chocolate is good for increasing white blood counts. It has to be 70%+. They didn’t publish a source but chocolate is a well known food and although I hate dark chocolate I thought I’d try it as my wbc, etc are permanently low. The supermarket I went to was selling two bars for $9. Bargain! Chocolate bars that size are $6 now. Anyway long story short I had a blood test thirty days after starting the regimen of one square per day and the test results were awesome. All my numbers are back in the normal range. So I’m going on for another three months when I’m due for another blood test just to make sure it’s not a fluke.

[TammyCross in reply to Kerryd22]

Yes, there is research on dark chocolate, and they know the exact ingredient that is beneficial. I will try it, too, but it is bitter, and my wbc counts are fine.

I knew a retired biochemist who had worked for the American Cancer Society and had become obese in her old age. She said the body converts everything to sugar, so she didn't buy that carbs are bad for us. I think she was not right about that exactly, in that some foods convert faster, but we don't need to consume sugar to get sugar to our brains. It does give a kick-start.

There was a big brouhaha a few months back about heavy metals, lead and cadmium, in dark chocolate. Trader Joe's, where I often bought chocolate, is the worst. A few are lower in both cadmium and lead, but still have some. The recommendation is not to eat a whole bar a day.

There are a few brands and types that are better. (An organic one was on the list of the worst.) Ghirardelli 86% cacao was the best!

Read about it here:

consumerreports.org/health/...

[Kerryd22 in reply to TammyCross]

Too much of anything is a bad idea. I don’t feel tempted to eat more than one square because I don’t like it so it’s easy to self limit. When I asked my oncologist if there was anything to do for my low blood counts he said no aside from an expensive injection or a transfusion. My low counts didn’t prevent treatment but it’s a shame that evidence based studies aren’t being used in circumstances where they really can help and they do no harm either to our wallet or our health. Thanks for the link!

[TammyCross in reply to Kerryd22]

So true. Why aren't they telling us this stuff? And it worked for you, so easily, no script. I have found things by myself that my onc. should have told me, right in her backyard, free or accessible. Why not? (Kokopelli wrote me recently that she felt our oncologists don't apply research to us, when it is so important because this is terminal, the research is burgeoning, and they don't have it solved yet. -- She was also complaining that more research dollars are going to early stage bc than to mbc, so I may have mixed the two arguments.)

I do moderation, too. Except maybe popcorn. I keep buying chocolate then it gets old and I have to buy it again. Isn't it typical, though, that something that is good for us is contaminated by the environment, so it can also hurt us?

[Kerryd22 in reply to TammyCross]

The thing about supplements is particularly galling in a way. As an example I have a regular Xgeva injection and I have a blood test before every one. When I first started I was told to take Caltrate Plus daily. That’s calcium and vitamin D in one tablet. There’s only one tablet that meets the prescribed criteria. Normally I seek the cheapest option but not this time. In the first month I was very casual about taking the tablet and I didn’t use it every day. The next time I saw the oncologist she quizzed me on whether I was taking the tablets and I prevaricated - so she told me to take two tablets. Instead I just made sure that I took the tablet daily and my calcium levels were fine thereafter. But I’ve read so many Xgeva stories where the oncologist pooh poohs the need for calcium supplements. Some supplements are helpful yet some American oncologists not only don’t recommend it they advise against it. Vitamin D helps with the absorption of the calcium but as we get older we often need extra Vitamin D for our immune system anyway. It’s not going to do any harm as long as we don’t binge on it.

Loratadine is another one that has been analysed in a large Swedish study but I only found that out from a passing comment in a post I read on another site. I was taking it because my GP prescribed it after she heard an ophthalmologist speak about the dry eyes that we get from medication. She actually prescribed Claratine but that’s twice the price of Loratadine and they’re both based on the same thing ie des-loratadine. I’d stopped taking it as I found it didn’t really help and I’d swapped to fish oil capsules. When I followed the research on Loratadine I found that it works to reduce inflammation caused by cancer as does Claratine but Claratine doesn’t work with breast cancer patients. There must be something extra in Claratine that interferes. Loratadine only works with six cancers. So it’s not a solution for every cancer (and it’s not a cure). I buy it online and it costs less than 15 c per day. I still take the fish oil capsules because I was advised to lower my cholesterol a bit although it’s not high but the kidney NP suggested it would help my kidney numbers. Taking both the fish oil and the loratadine has helped the dry eyes as I don’t have to pry my eyelids open in the morning.

I think oncologists try to avoid getting into the alternative medicine territory and for good reason but supplements aren’t alternatives they’re a necessity in some instances. That’s my ten cents worth anyway.

The only problem with my WBC returning to normal after 9 years is that I feel more motivated to get out of bed before 11am and it’s making my IF harder. 😂

[TammyCross in reply to Kerryd22]

Good to know. My doc did suggest calcium when I was on Xgeva, but I had had kidney stones, excess calcium, so she agreed I shouldn't take it. (And now I don't have that problem anymore, but I can't take Xgeva because I got ONJ.) And fish oil? One of the meds, or two of them, cause high cholesterol. I was trying to control it with diet to avoid statins. Maybe I should do fish oil? I forgot about the sticky eyes. I don't have it anymore, on Kiqali and exemestane. On Ibrance, my eyes teared badly. One ophthalmologist said the tearing was dry eyes -- but it is a known side effect. Not sure about that. I think it might be starting again on Kisqali. (What is IF?)

[Kerryd22 in reply to TammyCross]

I’m on Exemestane myself. IF is intermittent fasting. I do 11-7 normally but if I’m up earlier I try and do it the same but otherwise aim for 10-6. I eat early at night so that is not a problem. I agree about the necessity for moderation. The elderly get tested for Vitamin D levels. My dad needed tablets but my mum didn’t. Yet they ate the same foods and did pretty much the same time outside in the sun. Some people advocate really high amounts of Vitamin D but I take 1000u as directed by my oncologist. Just because a small amount helps that doesn’t mean that a large amount will help so much more.

I’m not sure about the dry eyes cause because the ophthalmologist said it was allergic conjunctivitis but others have suggested it’s due to the shortage of oestrogen . Either way I’m stuck with it but I remind myself that I’m above ground. What does it matter if my hair breaks off and I have wet eyes? It doesn’t really matter in the overall scheme of things

[Hopeful4Cure in reply to Kerryd22]

Sorry ladies to step in here, but what about vitamin D3, aren't any of you taking this? It is in an oil form with like a dopper (sp) can't think of the word right now, but I take out .50 daily and release it under my tongue.

[Kerryd22 in reply to Hopeful4Cure]

No I don’t take any extra vitamin D because I haven’t been prescribed it.

[Hopeful4Cure in reply to Kerryd22]

I'll have to check with dr. I have been prescribed it but that was years ago and it has not been brought up since.

[awesome4ever in reply to Hopeful4Cure]

I take 2000IU of Vitamin D3 daily as advised by my oncologist. However I live in a northern climate that gets very little sunlight during our winter months. Testing for vitamin D levels is not standard here as there is the assumption that most everyone will be deficient to some degree. I've been taking it since diagnosis in May 2018.

[TammyCross in reply to Kerryd22]

Also, I was on a lot of D because it was low. I thought I felt better. Then my natural D went back up and I was getting too much. There are bad effects of just about everything in excess, including D.

[104shopgirl in reply to Lynn-in-California]

Lynn, I believe we are all fellow warriors battling this cursive disease, and as such, all comments and opinions are welcome on this forum. I wasn't critical of your content so much, as I was your very rude delivery. What was it our Grandmothers used to say? "You can catch more Flys with honey than vinegar "

[Kerryd22 in reply to 104shopgirl]

no she doesn’t owe an apology. If it’s okay for one to post something it’s okay for another to post something that disagrees with it. Freedom of speech. Just saying.

[monkeygirl62]

I actually tried the Joe Tippen protocol before I had any cancer treatment. I was moving back to be with my kids and I didn't have an oncologist yet, (so about 4 months from diagnosis to starting letrozole in November, then Ibrance in December 2023). I was diagnosed August 2nd, 2023 and PET scan showed mets to lungs, collar bone, left under armpit and primary in left breast, I am ER+, HER2 negative with two different types of tumors, luminal A and luminal B. My daughter had asked me to try it since a client of hers had amazing results with it. Since I was waiting to see the oncologist in November I decided to give it a try. I did fenbendezole and berberine. I could not do the metformin nor the turmeric, it interacts with Eliquis. I did this for 3 months and it didn't work. It was a failed experiment. Joe Tippen was also on keytruda at the time he was doing his protocol. So he was not just solely doing an adjuvant therapy he was in a clinical trial for keytruda. IMHO he doesn't credit keytruda for shrinking his tumors (to the point of NED) but his protocol. My cancer continued to grow fast and spread. My CT scan at the end of November confirmed this with spread to liver, right adrenal gland, a mass near left ovary and the other tumors grew larger, two of them by nearly a cm (all since the CT scan on September 7th). The protocol didn't work at all for me. I am grateful for Ibrance, in two cycles my tumors shrunk in half and the lesion in my liver completely gone. So far the traditional cancer treatment is really working for me.

[awesome4ever in reply to monkeygirl62]

Thanks for your honest opinion. I have a scientific mind so would never buy into these alternative therapists that have no evidence based studies backing them. I was diagnosed in 2018 and had 2 friends diagnosed at the same time. We were all ER,PR+ and Her2-. My 2 friends decided to buy into the COC protocol in which they took literally a handful of various supplements etc daily. They also took regular traditional therapy Ibrance and Letrozole which was the go too first line therapy at the time. Both my friends seemed to be nauseous and had general GI issues from the onset of the protocol. I got 5 years from Ibrance & Femara with no side effects. Both my friends succumbed to the disease one back in 2019 and the other last year. I think the protocol did nothing at all and in fact decreased the quality of life that then was shortened. There are many people out there who prey on people with terminal disease, knowing the desperation we feel. I hope that the conversations around promoting this go away quickly so no more people buy into unproven therapies that only pad the wallets to those that promote. Sorry I have a strong opinion on this but I will get off my soapbox now. Take care.

[Kerryd22 in reply to awesome4ever]

There is a report that shows that people who try alternative treatments before the scientific backed treatments die five times faster than those who start at the scientific treatments. A Chinese actress who used traditional Chinese medicine for a couple of years before accepting that she needed the scientific treatments instead, died very quickly from breast cancer. To be fair she was a young woman and cancer can be more aggressive in younger women but her short life span after trusting traditional medicine startled young Chinese who openly questioned the benefits of the traditional medicine they’d been brought up to trust.

PS that statistic wouldn’t apply to those who tried something while waiting to start a treatment. It refers to those who spend months on alternatives to chemicals and come late to the party.

[Lilywallytootsie in reply to awesome4ever]

Awesome, I would add just one comment to your post. It would be get two or three second opinions from oncologists before taking anything that is not approved. It is best to be safe, rather than sorry. Thank you for the wonderful advice you give us. I am sure there are folks whose lives have been prolonged thanks to your wisdom and medical knowledge. Thanks again. Blessings, Hannah

[kellylinkane]

i just wonder where you can get dr prescribe anti parasite meds i live in california, i am Chinese grow up with chinese herbbal medicine i do water extract liver formula prescribe from old bejing well known herbal doctor to protect my liver because my liver enzyme increased after they give me falsoldex it did drop my liver enzyme to green level, the formula combine 4 herbals i cook daily one of call artemesin is help out balance galdbladder hormone apparently if estrogen level increased will form galdbladder stone so is regulate the hormone to prevent galdbladder stone also one of formula herbal intresting found artemesia also anti malasia , we chinese live to use it cooking with soup dish