Hope you are all having as good a day as you can and that the sun is shining brightly on you and yours.
I am feeling especially bolshy today. I am just not prepared to accept an incurable (and therefore ultimately terminal) diagnosis.
I have sent off for some Fenbendozole (dog wormer, yes I know!) and will give that a good go for the next several months as per Joe Tippens. The Letrozole and Ibrance are working well at the moment but I don't want to wait until they stop working before I try everything I can to eradicate this disease. I am also very lucky to be symptom and side-effect free at the moment. My next scan is due in March next year.
If I am lucky enough to be NED at that point, I will continue until that changes.
If not, I am thinking of Jane McClelland's protocol. Much more complicated and many more meds to take but needs must. Am I right in thinking that the only way to get the required prescription meds (well the first four anyway, ie statin, metformin, Mebendozole and Doxycycline) is to sign up for the COC protocol? Has anybody, anywhere found another way to get hold of them? Am I really the same person who used to rarely take even so much as a painkiller?
Thanks in advance and happy Sunday to everyone xxx
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LouisaMay
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I’ve just started the COC drugs..been on them for 10 days
I do feel very tired but as I finished the radiotherapy 2 weeks ago I’m putting it down to that and restarting Ibrance
I didn’t even ask my GP or oncologist I just went ahead...but the consultant I saw in London said only a few of the GPS approached were willing to prescribe off label drugs
However your doctor might be fine with it so I suggest you ask the question
I’m like you and will try anything that could benefit...I’m not planning on giving in yet....my main problem is pain from my bone mets
Hi Barb. If you didn’t ask your oncologist about COC, what letter did you submit about your diagnosis and current meds? I emailed COC in London and the requirements they sent me included “a letter from the oncologist.” I did ask my oncologist before and he was skeptical about it so I’m hoping I don’t have to tell him about it yet until after I’ve been to COC.
I asked the oncology secretary for copies of all my notes...that is an entitlement we do have and this cannot be denied
She didn’t ask why and I didn’t offer an explanation ....it’s not their business to know why
When I went to the COC I filled in a form to agree that my oncologist and gp can be informed of the treatment but you don’t have to let them know. However I don’t want to seem underhand or secretive
If and when I do COC I'll do the same. I 100% know she wont be on board. I only asked about vit B12 the other day and she brushed it off. I have to push for everything. Evem When I just ask for a copy of bloods they turn their noses up so Ill just go ahead anyway. I ask the pharmacist about supplements I dont even mention it to the Onc, shes not interested.
Yeah I asked about co-q10 and that's the response I got. Definitely a learning curve this mets malarkey. Find everything out for myself, usually on here x
Hi Barb, do you take berberine? Try as I might I cannot seem to find out if it causes a problem with Ibrance so I haven't taken the plunge yet but would like to.
I would check with your pharmacist for interactions. That's what I do when I want to add a new supplement. I take berberine, but am on a month's break until after my next CT scan on Friday. Then I'll start up again. A month's break is recommended every three months to give the liver a break.
I had my vitamin B12 checked twice by my GP recently. She was happy to do it for me. If your oncologist is not on board with that, then try your GP. You might have better results. She also prints off my radiology and pathology results, whereas my oncologist won't. The only stipulation is that she has to wait until after I have seen my oncologist before she will let me have my radiology results. I get my pathology results before seeing my oncologist and normally have them in my hands while I am having a consultation with my oncologist. I would also second Barb's comment about being proactive about supplements. I talk to my local pharmacist. He takes me into a private consulting room for that. I don't need an appointment.
Im on it with the GP. I called Friday and someone is calling me back tomorrow. I also speak to the hospital pharmacist. He's a lovely young chap and so helpful. Thats why I dont bother discussing supplements with the Onc. No point. Likewise the fasting, Ive never said anything to her because theres never enough time and unless its about palbo or letrozole she isnt interested. Good idea with the records. Id be very interested to see copies of my radiology and compare them every 3 months.
You sound like you are on the ball. My oncologist also just likes to focus on my conventional treatment. As long as I don't stop that she is happy with me. When I first mentioned I wanted copies of my radiology and pathology results I was told to apply through the hospital PALS system.
Then my GP let me into a little secret. She said some doctors are reluctant to share the results because some patients end up making rash decisions about their health based on what they discover. But she added that I was sensible and could be trusted to make good decisions, which is why she has never had a problem with sharing my results with me. She sees how I am serious and proactive about my health, so she was the one to order the following tests: vitamin B12, thyroid, fasting lipids (which all came back normal) without being asked and she supported me when I said I wanted the shingles vaccine.
Morning Sophie, you definitely have an ally in your GP which must be a great help. Im just starting to build a rapport with mine so hopefully, I'll be able to forge the same mutual trust that you have - previous to all this I virtually never went for anything. Whats the fasting lipid? Ive never heard of that.
Now you mention PALS, it's jogged my memory about an acquaintance I have who has contacts so Im going to get in touch about it. It may be another avenue to getting what I want.
Yes, I do like my GP. She's about my age and always has the time to ask how I am (not just talk about the disease) and put herself out for me. If you can get your GP to print out your results it will save you having to go through PALS, which can take weeks. She won't prescribe the off-label drugs, but she has done so much more for me. The fasting lipids blood test checks your cholesterol levels. I had never had one before and when she suggested it I was happy to get it done. She said my good cholesterol was high. I hope that you get what you want. I was the same as you. I hardly ever went to the doctor's and now everyone knows me on a first name basis!
Thanks for the info. I managed to chat with GP. Getting tested for B12 etc. Also agreed to print out scan report but said if I wanted scan imaging would have to apply via hospital for CD under GDPR rules. Tbh, Im not that bothered now I have the report, and to be fair to the Onc, its the same info Ive been copied into. Its given me peace of mind though and each time I have a scan now I'll request a copy of the report just to make sure Im fully informed. Xx
You're welcome, Josie. I know some patients don't want to see their radiology and pathology results, and that's fine. It's a personal decision. But I want to see what's going on in my body and then make changes or improvements if needed. I'm also pleased to hear you are getting your vitamin B12 tested. By the way, if you are deficient, you may want to take a supplement or from a food source depending on the results and what your GP suggests. I am not deficient, but I know I can get it from nutritional yeast (a vegan staple) if I want to. You can also get more vitamin B12 in your diet from Marmite. It's definitely worth getting on side with your GP. I see mine every month for my zoladex injections, but I know that if anything else comes up I can jot it down and have a chat with her. She is normally really good about helping me and co-operating with my wishes.
Oo Im definitely in the "love it" camp so I'll buy some Marmite anyway. Love it on toast 😆. Is the nutritional yeast in tablet form or powder and/or anything like Brewers Yeast Powder? I tried the BY powder in my cereal and couldnt get used to it 😣. I was considering getting some Brewers Yeast tablets.
Thanks Sophie.
Ps Hope your poochie cients are coping with this heat. X
Here's a link to a previous post about nutritional yeast, which has a picture of what I use. It comes in powder form. I think a teaspoon is a single serving. I've even added it to my semi-homemade naan pizzas!
I haven't tried brewer's yeast, but I seem to recall it is different.
By the way, my pup pals have struggled in this heat, and so have I. I have been finishing my dog walks by around 10:00am all week. I have one German Shepherd who looks at me as if to say "Why are you taking me out, Aunt Sophie?"
Aw bless. It has been ridiculously hot today but Ive spent most part of it at hospital so at least was air con was on. Thanks for the link I'll have a look. X
Hi Barb, me again. Again, I never even thought to ask for a copy of all my medical notes. I will definitely be doing this on my next visit to the hospital. Knowledge is power! Thank you for the nudge.
You're very welcome! Joe had very advanced metastatic cancer (it affected several organs and he was told to go home and put his affairs in order), when a vet friend of his recommended trying fenbendazole. He also took some supplements and within a short time he was cured. The human version is mebendazole, and is part of the 4-drug COC protocol, which I am taking. I started in April, so will hopefully see some regression in my next CT scan, which I am having this Friday. If not, I will keep on with it and then add more things to the mix as and when needed.
Good for you! I am not ready to accept that I am going to die from metastatic breast cancer either, not while there is still a lot of hope and many other ways to attack this disease. It may take more work than early stage disease, but that doesn't mean to say it is not possible.
I hope the fenbendazole works for you. I am willing to try it too at some point if I feel it is necessary. Right now, I am on zoladex, letrozole, zometa, the COC protocol, and various supplements. My GP and oncologist would not prescribe the off-label drugs, but it may be worth asking. You never know! Yours might be more receptive to the idea of what you are doing!
Oh, and as far as not taking anything pre-disease, I was the same way! Other than the birth control pill, my medicine cabinet was pretty empty! Now it looks like a dispensary.
Sophie...you probably don’t need that birth control pill anymore! Sorry, that was my black humor coming out! All nurses have that strain of humor hidden inside of them! Elaine
Oh yes, I know! I just meant that's just about all I used to have in my medicine cabinet pre-disease. Those pills were the first to be thrown away once I was diagnosed. I think they may have contributed to my breast cancer, so I'm not happy about that. Not long after I had started my zoladex injections my GP was away on holiday so I saw a different one at my practice. I asked him if my husband and I should continue using condoms or if it safe to stop using all forms of birth control and he became flustered! I didn't think it would be possible to embarrass a doctor. Don't they hear it all?! At least a benefit of a forced menopause is not having to worry about birth control or sanitary products anymore. And who wants any more PMS? Come to think of it, there are plenty of benefits! When my periods stopped, I gathered together all my sanitary towels and tampons, put them in a paper bag and labelled them "Free to a good home" in the hope that someone might want them, but there were no takers! In the end, I donated them to a local homeless charity.
Hi SophSP, thanks for your reply. I will keep you posted on the Fenben. Having asked my onc and got a 'no' I will also ask my GP about the COC meds. I don't hold out much hope as I don't know her well at all, I never used to visit her before this mallarkey! Onwards and upwards! xxx
You're welcome! I hope you have more joy from your GP. I suppose it's hard for them dealing with some of our requests, as they have to work within the parameters of NICE. I didn't know my GP at all before my diagnosis, as I would be seen at a military installation for anything I needed (which is where I was actually diagnosed).
Thank you so much for sharing your mood with this timely post . This is so bizarre as it landed into my daily feed I saw it as a sign having had a similar Awakening moment at the weekend ... I have been slowly but surely going down the prepping for the worse mindset over the past few weeks. .My 2 best supporting acts in that life drama of mine Mrs Positive and Mr Realistic were having some cohabitation issues . I started very positive when diagnosed a year ago ( I knew it would be a tricky journey but was keen to see the best in everything while managing my expectations ) but I got a significant setback last month when diseased progressed and I had to say goodbye to Ibrance.. I had mentally prepped myself for a longer journey and the one sided break-up happened too early in our relationship! I was still talking the talk but to be fair the walking the walk bit was starting to slack behind 😉.... And then on Saturday night during one of the those newly acquired sleepless nights I decided to get a grip and stop planning for the next 3 years as an immoveable timeline... I decided to get a refund on my timed ticket and swap it for a flexi instead! It might be 2 , 5 or whatever years I just need to stop focussing on the number and just play the long game... I know this probably means I will get further knocks down the road when I haven't managed my expectations well enough but on balance I now feel the benefit of that " hope" state overweight the emotional cost of the " didn't work" results ...Now don't get me wrong , I am still in the infancy of my newborn "bolshyness"( not fully graduated as a rebel with a cause) , I have not yet acquired (nor am I quite there in willing to invest the time to acquire) a detailed knowledge " a la Jane Mc Lelland " of every complimentary treatments available (with associated suitcases full of daily vitamins and supplements) and so no dewormer yet ... I also ,like a little schoolgirl worried to get in trouble , got my COC move approved by my hospital' s medical team ( they print off anything I asked for whenever I need it to answer some of the follow up questions on the thread).... But I feel, like you, I finally got myself out of that rigid box I had got myself into and it feels so much better!
So many thanks again for sharing your thoughts and feeling.
Hi Marieleb, I'm so glad that my post chimed with you and was helpful! What a convoluted journey this is. But you have it spot on, better to walk the road with a heart full of hope (most of the time) than with that constrictive doomed feeling which I fear could become a self-fulfilling prophesy. Of course there will be knocks but there are people out there who have got better from stage 4 cancer. In many cases (but not all) they seem to be people who have at some point done things beyond what the oncs have recommended.
My attitude toward the 'white-coats' is changing too. I would never just hand over responsibility for my health to them (although I know people who have). But as time goes by, I realise that they have an important role to play within the constraints of what they are able and allowed to do. Beyond that, it's up to me. And whilst it is difficult to find a way through the wealth of conflicting information out there, I am steadily building my knowledge and working out my options. Also trying not to become obsessed with it all though, and doing my utmost to enjoy every minute of this precious life.
At the end of the day, tomorrow is promised to nobody. I love your style of writing by the way.xxx
I am like you. Never took pills and not willing to accept this dx!
My onc doesn't know anything about supplements or COC. So , yes, you have to be your own advocate for what you want.
I'm still trying to figure out how to get the COC protocol . I'm going to try my palliative care doc. I'll see her on Friday.
The pharmacist laughed when I asked him about it. He saw no reason to take the 4 drugs in the protocol. He saw no reason why they would help with cancer.
I think oncology is very slowly changing and in a small number of years the COC team will be able to publish data that shows that they are extending survival and even possibly putting some people into remission for a long time. If and when that happens, the oncology world will have to sit up and take notice as more and more patients will be demanding these meds by then. In the meantime, as far as I can tell our only options are to get them from onc or GP(unlikely), to join the protocol, or to raid a pharmacy!
Good luck and please let us know if you obtain the meds from anywhere other than COC.
Hi, I'm not taking them yet as I won't be able to pick them up for a couple of weeks. But I definitely will be! In Joe Tippens' closed group, many, many people are taking them (well it's powder actually) with no ill effects and sometimes with massive benefit. In vet and med circles it has apparently been known for decades that fenbendazole has anti-cancer properties but as a generic med there is no money to be made by doing human clinical trials.
I sometimes feel I have entered a new dimension, doing stuff like this but that's where I am. xxx
I live in the US and am on regular Medicare, not an HMO. I called my primary physician and requested Metformin. I started taking it on June 28th. I had a cancerous growth on my stomach that was going to be removed on July 16th. I had to call and cancel the appointment because after 7-9 days on the Metformin, the growth was gone. I was diagnosed as a borderline diabetic in 1975 by a diabetic specialist who did the 8-hour glucose testing right before they went to the 3-hour test. He said that unfortunately the 3-hour testing did not pick-up borderline diabetes. This all makes sense if there is a direct correlation between diabetes and cancer, as they believe there is. I can't help but wonder how many cancer patients are borderline diabetics and don't know it. I am not happy with the awful side-effects of Ibrance. I have polio lungs and so the fact that the Ibrance can cause pneumonia is a real threat to my life. It has also made everything taste like cardboard, including water. Also, while I was on it, the cancerous growth progressed. I called and asked Pfizer what they were doing to fine-tune the side-effects and their response was that they are doing nothing. I am not impressed with Big Pharma especially when their main goal is to make huge profits on their drugs. Last year just one of their CEO's was paid $28M. I think it's a shame that these outrageous payouts aren't better spent on fine-tuning the side-effects of their drugs. I also think that more cancer patients need to be more outspoken about this issue. I think our oncologists need to demand more from Pfizer and other drug companies that are more driven by profit than than the welfare of cancer patients. Of course, you need to do your own research, but this is what happened to me.
Hi needabreakfromcancer, wow! That is an amazing testament to the power of metformin as a cancer drug. What an excellent result for you, I am so pleased for you.
Regarding big pharma, well they produce the drugs we take but of course their number one aim, as with any business, is to make money and they are very good at it. There are many who think that big pharma will never find a cure for cancer because the ever fatter golden goose would then be killed. Which is one of the many reasons I feel the need to add to the orthodox protocol. I don't think it will be long before Metformin is offered to all cancer patients.
I'm sorry you are having such bad effects from Ibrance. I feel very lucky to have none to speak of. I hope yours decrease over time, as they seem to for many people. With your lung issues, I can understand you being wary of it. Don't hold your breathe waiting for Pfizer to step up and do something though! With best wishes xxx
Thank you for your thoughtful response. My oncologist wanted me to go on Ibrance for the 3rd round. I took it for three days and just don't feel safe with it's numerous side-effects, possible and real. I have no taste, even water taste like cardboard. How can someone who is sick going to heal when you can't eat anything? Because of my good result with the Metformin, I would rather seen the results of my scans using only that. I know if I were on the Ibrance, that my doctor would credit the Ibrance. I know that the Ibrance had nothing to do with the cancerous growth going away. In fact, it got worse while I was on the Ibrance. I also got liver mets after going on the Ibrance. My numbers went up 230 points. Several nurses in my doctor's office told me that I don't have to do what he wants, and that I have a right to do what I want. I am not impressed with the Ibrance. I have no desire to be poisoned.
Thank you very much. As ever in life, there is no instruction manual for this journey so we all have to find our own way as best we can. I have no intention of dropping my orthodox meds any time soon. At stage 4, I think the time for trying to tackle this by 'natural' means only is past (for me at least). But I will always try to do more in some way, as the orthodox meds are not aiming for a cure, just trying to buy me some time. I am aiming to get my life span back! Thanks for the good wishes and best of luck to you too. xxx
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I'll check it out.
Feeling alone. 
Feeling low. Wind out of my sails
Confused about how I am feeling
