I’ve tried the drugs from COC ...firstly I dropped the statins as I felt awful on those
Restarted the other drugs August 8th but honestly I feel terrible on them..no appetite and have lost half a stone...have a nasty uti...could be a coincidence but can’t know that...everything hurts and I feel nauseous
I’ve decided to stop taking them as I prefer (and deserve) a better quality of life than this
Don’t let me put you off trying this protocol as it may just be me...but I honestly went ahead with this in a positive mindset...going to London..paying the fees...starting the drugs in an enthusiastic way thinking I was helping myself and I’m very disappointed that it’s all come to nothing
Looks like I’ll have to rely on the conventional drugs and hope they do their job
I’m going to force myself to go for a swim as weather hot
All the best to you all
Barb xx
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Hi Barb, you're not a failure. It's like we keep saying on here, everyone's different and what's right for one isn't necessarily right for all. I can understand your disappointment but the fact is you've tried. If you hadn't then you'd still be wondering. I've heard you talk on here many times about quality of life and you're right, it's no good carrying on if it's affecting you so badly. Real success is having the courage to try something but if it isnt working, being brave enough to accept it.
I totally understand you, and with the wedding getting closer you really want to be at your best..I must admit I have been feeling rotten for the past 2 days too ... For the first time since diagnosis I had to call in sick, feeling nauseous and actually being sick...constant flu like symptoms, Just awful...I too associated it with COC ( well metformin mainly) as it coincided with upping the dose ... I was very close to throwing the towel too ... Especially as the next Mickey Mouse consultation and the associated £280 pricetag were getting closer ... But weirdly enough I started to feel better yesterday... So I am sticking with it for now but I am keeping my options open .If my next PET scan in late September shows no progression I will probably stick with it as I won't be able to know for sure how much the added drugs supported conventional treatment and for that I will give it the benefit of the doubt, if however PET shows progression than I can conclude both protocols have failed and I will probably drop COC too...
Remember to post pics in your mother of the bride frock!😍
I have no energy and feel just exhausted going up the stairs....had to get someone to fetch my horse in from the field and tack him up yesterday...I’m so fed up and trying not to cry...maybe a swim will perk me up
I’m so sorry to hear that the COC protocol did not work for you. It may not be the best time to say this but would you be willing to try Fenbendazole? I’ve been taking it for 10 days now and so far I haven’t had any side effects. I don’t know if it’s working as it’s early days. I will have a blood test on Sept 5 and if my tumor markers go down then it is probably working.
Sorry you are not feeling great Barb and hope by coming off the metformin it will help get the appetite back and energy with it !
What a coincidence ... as your message came in ,I was reading my Mail on Sunday , and there is an article ‘ your pills nasty side effects ? They’re not as rare as you think ‘... and it actually mentions metformin wrecks taste buds ( it lingers in saliva affecting taste for many hours after it has been taken ) . So it may not be specific to you , so don’t feel it’s your fault ! Hope you soon get your appetite back !
I’m finding it too hot today ( a rare occurrence in the UK !) and I could jump in the pool with you ! 😂 x
Poor Lottie ...I love spaniels...my daughter is thinking of getting a cocker spaniel puppy....must be awful for our fur babies in this heat....my cats disappeared all day yesterday...somewhere in the bushes I suppose...and the horses are just tormented with flies...ugh
Morning Barb ! How are you feeling ? Another hot one today but we shouldn’t complain as we don’t get it that often in the Uk
Yes spaniels are all lovely and irresistible! Cockers are quite bouncy and lively ! Cockerpoos and Cavipoos are popular with young families now as they do not molt so much , so are less of an allergy risk for children
. Sadly we lost our beloved Teddie ‘Rocketman’ ,Lottie’s twin brother , a couple of months ago ,due to a progressive heart murmur over many years / leaky heart valve (unfortunately a common ailment in King Charles spaniels ) . Lottie will be 11 next Monday and is spoilt rotten now she is on her own ! We miss him loads but he had a great life and have lots of lovely memories . X
Oh it’s heartbreaking losing a pet...I’m dreading the day when Monty will no longer be with us...he’s 30 next January...oldest horse I’ve had and is one of the family...was even at vanessa’s wedding...lovely memories
Is Lottie having a party for her birthday?.. hope so
Hi All, I was going to make the same suggestion about the fenbendazole. Firstly Barb, it's not even about being a failure. It's about having the courage to try. And you have courage in spades. Of course you are understandably sad and disappointed, which of us wouldn't be? We are all different and this cancer journey really highlights that, in how different we all feel on similar drugs.
For info, I have just finished 3 weeks on fenbendazole (on the standard 3 days on 4 days off) and although I have never felt ill so far, I do actually feel much better. Skin lesions on the back of my neck, which had shrunk on Ibrance and Letrozole, have now completely disappeared and I feel more energetic, hopeful and optimistic than I have since I was diagnosed. The fenben is cheap to buy, £61 for 33 weeks supply. And so far no bad side effects whatsoever. I take it in a morning before breakfast, chase it down with water and then take a dessertspoon of olive oil as I understand it is more absorbable in fat.
I am not taking the vitamin E, turmeric and CBD oil which Joe Tippens recommends. I do take omega 3 fish oils, mini aspirin, good probiotic and wheatgrass powder in an attempt to up my low neutrophils.
I am not due a scan for some months so won't know for certain what is going on, but to have hope is transformative in itself.
Sending love and best wishes to Barb and everyone.
I think I will try the fenbendazole after the wedding is over and I can put my energies into myself
Which brand do you buy and where from?...I saw some on Amazon
I still have the human wormer ( sounds funny!!!) and wondered if this is too powerful and maybe upset me...maybe the dog version is milder?... I sound like I don’t know what I’m talking about!!!..true I don’t!!
It just seems sort of crazy to take an animal medicine but then it makes sense as well as the dosage must be so small compared to the Vermox wormer that I was prescribed from the COC..and therefore less toxic to humans?
I’ll have to have a look to see how much of the active ingredient is in both
I hope you have continued success with it...let me know as I’m obviously interested
Mine is called Panacur Granules for cats and dogs, from Pet Drugs Online. The dose is for a 2kg dog/cat/kitten/puppy so does not seem to be toxic for us. Apparently it has been known to be non-toxic and to have anti-cancer properties in certain circles for years. There are those who consider it to be more powerful than mebendozole as it acts slightly differently. It apparently attacks cancer in three ways, destroying micro-tubules, something to do with p53 and something to do with blocking glucose and it seems that in some cases that is enough to kill it off completely. This is all very new, Joe Tippens who is spreading the word has been clear of cancer for 2.5 years.
The problem is that it is off-patent and therefore cheap for anybody to produce so no company can afford to take it through human trials as such.
Anyway, shelve it for now, enjoy every moment of the wedding, and relish the knowledge that you have something else up your sleeve to try when it is over.
Just found this on the Joe Tippens closed Facebook group which may be useful (I am not vouching for the info but have no reason to disbelieve it, it certainly made me smile!):
Ok friends, I spoke with my boss and have a follow-up to my post from a few days ago. Essentially, Pancur is a very powerful drug on solid tumors and here are all of the "molecular" reasons why.
1. Fenben has very low toxicity to the body, meaning it will not mutate your DNA. As we all know, cancer cells become cancer cells due to mutations in our DNA. Chemotherapy cannot target only cancer cells; therefore, chemotherapy ends up damaging both healthy and unhealthy cells. When healthy cells are damaged, it causes mutations. Too many mutations will eventually lead to a cell becoming cancerous, aka new cancer cells. Fenben does NOT damage healthy DNA, so you are OK to take it, it will not hurt you.
2. Fenben is a VERY oily substance and MUST be taken with a fat to be absorbed into the body. Every drug has a specific bioavailability, which is defined as “the degree to which a substance is absorbed into the body”. Because Fenben is super oily it is not very soluble. The suggestion is to mix the Panacur with a tablespoon of olive oil and then chase it with whole milk to increase bioavailability. Be sure to mix and or chase with high fat substances to ensure the drug absorption has enough bioavailability, so your body is taking up the full dose. You want to make sure you are giving the drug the best absorption!
3. Fenbendazole attacks tumor cells in 5 different ways, which is why it is so very powerful. First, it destabilizes the cell structure, basically collapsing the cell. Second, it blocks the glucose channels within the cell wall, which ends up starving the cell of the glucose it needs to survive. Third, because of the lack of glucose intake, the mitochondria inside the cell (which is the main energy source of all cells is also starved. Fourth, it turns on the P53 gene. The P53 gene is found in all cells. This gene is used to prevent cells from turning cancerous. When a cell mutates to the point of cancer, the P53 gene is turned off. Fenbendazole turns this gene back on, basically killing the cancer cell from the inside out. Fifth, it stops cancer cells from colonizing (forming a large mass). If cancer cells do not colonize, they do not create new solid tumor masses.
I hope this information helps. It was passed along to me from a brilliant organic chemist. I hope I was able to answer your questions. A few of you passed along some questions that unfortunately I do not have an answer to as they are more specific to a medical doctor than a chemist’s knowledge.
Wow you’re very knowledgeable about this...makes sense that the side effects will be lower due to the doses for dogs and cats are for a much lower body weight
As for being a bit squeamish about taking animal meds...well we’re mammals as well...actually it’s in the wormer I give my horses but they have a much larger dose as Bugsy weighs about 500 kilos and Monty about 700 kilos but they still have the same dose do it works the same on them
After September I’ll give it a go...I’ll buy the Panacur as it’s the recommended one and hopefully I’ll vope with that
I just wash it down with water and then take a spoonful of olive oil, on an empty stomach first thin in the morning. However I'm going to try just putting it in the olive oil next week. Good luck! xxx
I wonder if mixing with full fat yogurt would be suitable...the thought of drinking olive oil ugh but needs must...I can do what is suggested in your post...olive oil followed by yogurt...I’ll experiment
I am thinking of trying Joe Tippens' protocol after my next programme. Dr Callebout has devised a six-week programme for me, which I will try when I get back from my holiday.
I see! So it looks like one sachet is nearly two doses. Have you looked at Joe Tippens' blog? He outlines everything he did. It also seems like he did not have any side effects from the fenbendazole.
For small dogs you can get the 1 gram sachet. Exactly one dose. I bought the 4 gram envelopes which are for larger dogs. I fill four 00 capsules and four 100 mg capsules and take a big capsule and a small one each day. Have not taken many days off, but feel perfectly fine except a bit of itchiness in my legs and ankles. It might not even have anything to do with it. I think I saw someone advice that a 1/4 teaspoon = a gram. Not sure have not tried to measure it like that.
Chewy.com sells safeguard and panacur. The prices are not bad, but actually better on E-bay. I bought 90 grams for about US $20 with tax. It is a bit less potent having 200 milligrams of the fenben in each gram of the granules. I plan to take one 00 capsule which I fill myself morning and evening when my safeguard runs out. It is from the Ukraine so you have to read the instructions on the sellers listing. Russian is not my cup of tea. Basically, one gram is 200 mg.s instead of 222 mg.s.
Of course, I'm on the same dose with which Joe Tippens cleared his metastatic lung cancer in a matter of weeks. I take 1 x 1g sachet per day for 3 days (with olive oil on an empty stomach) then have 4 days off. I bought a pack of 100 sachets for £61, which works out at 33 weeks supply! It seems there are many people who take higher doses but I thought I'd start with that and see how it goes. I'm not due a scan for several months and if need be I'll up the dose then.
Oh Barb so sorry you are feeling like that. Just rest up. I know the feeling too well as I am there also. The sad part is ibrance didn’t fail- my body just had escalating allergic reactions to it.
You have the wedding coming up. Rest up- let your body rest also. You just had all that radiotherapy which stays in our system a long time. Feel better soon. Sending hugs 🙏🏻🙏🏻🙏🏻🙏🏻❤️❤️❤️❤️
Are there clinical trials that show this protocol works? Go for that swim and take it easy. Being the mother of the bride is exhilarating and stressful. Not a good time to put yourself through this. 🌈
Omg you are so hard on yourself!!! Give yourself a pat on the back please💕
Hi Barb,
Oh no. You have really been through a lot lately, what with the side effects from the radiotherapy and now the UTI on top of that. I'm sorry to hear that you have reacted so badly to the drugs and that you lost so much weight. Half a stone is a lot to lose in such a short period of time. You are not a failure, Barb, so please don't beat yourself up over this. You gave it your best shot and have decided this protocol is not for you.
It sounds like you need to take some time to rest and let your body recover, so that you can get ready for Miranda's wedding. I hope that will give you something to look forward to.
Enjoy your swim. I just put some clothes out on the line and am now cooling off in front of a fan. I think tomorrow is meant to be even hotter.
Everything doesn’t work for everyone or it would be a cure not a treatment. Have tried things that work for others and not me, it does suck, but I am sure something you have been that worked for you hasn’t worked for others. We live and learn and fine tune what works for our bodies.
That is so true...I just wanted to help myself but now feel really disappointed and a bit annoyed with myself for spending all that time and money on something that for me has been a waste of time and made me feel rubbish
Anyway I’m going to put it behind me and try and move forward
Sandra what lovely things you said to me...so kind
As you said there is no hard evidence these drugs will work for me but I sort of wanted them to help as like everyone on here...we’r desperate for anything that will help to give us a longer life...no point in feeling rubbish though for a long time!!
Yes I’m going to concentrate on getting better...lost interest in doing things...Vanessa wants us to go for afternoon tea this week as she’s a teacher and back at school next week...but I’ve no appetite or interest but will make an effort as the girls hate to see me like this although I tend to hide stuff from them
You are inspirational; never a failure! I don't consider pain management anything but using medicine for what it was intended, to ease human suffering. Sending hugs and prayers for you to get better! Remember, everyday we live, life can change in a heartbeat! It is only our job to keep HOPE's candle burning bright, because God who is way more powerful than us can heal us in the blink of an eye, may this be so with you, in Jesus name, amen. <3 xo
Barb, I’m sorry this hasn’t worked, but don’t give up on yourself. You are a survivor! Just look at all the things you have going on, recovering from radiation (been there, done that, it’s slow and not easy), a wedding coming up, the usual side effects from the drugs we have to take, new pain medications that you are adjusting to, and now a UTI. Give your body a break! Rest up, take a stay at home vacation, then enjoy the wedding. When you feel as tip top as we ever get, when you enjoy riding your horse again and feel good about it, then think about the COC protocol or the wormer. This isn’t a failure, this is a pause to get your body ready. Then you might try some of those drugs, but one at a time, so you know how something works with your body before adding another. I always pull my hair out when docs want to change three things at one time. How will you know what works or doesn’t work for you when you make that many changes?
Your goal right now is to do everything you can so that you can enjoy the wedding. That’s a big part of quality of life...enjoying it! Good luck and many hugs for you and the bride!
I really appreciate your good wishes...you have made me realise just how much my body had had to deal with...I expect to just be able to carry on as usual but although I want to be superwoman I know deep down I can’t and that makes me furious...it’s as if I have to prove I’m not really I’ll or something?.. and by pushing myself the disease can’t dominate me
Marianne got my point exactly. We are already superwomen for dealing with our current problems. We just have to careful not to add so many other things to our plate that the plate cracks!
I like the analogy about the plate. We don't want any cracks! I think my plate has been cracking a bit lately, so I will scale back. I am so ready for my holiday next week!
Hi Barb, what lovely things people have put on here and I thoroughly agree with all of them. You have such courage, determination and spirit and deserve the best. I admire you as I do not have the courage or energy to think outside the box. Be kind to yourself and enjoy this weather! I cannot sit out in it as it is too hot but I don't need a hat when I go out as my wig acts like one! Lots of hugs to you, Fayx
Oh thank you Fay...I don’t envy you having to wear your wig in this heat...mind you it’ll be cosy during the winter but maybe you won’t need a wig by then?..that would be good
Yes I actually feel slightly better this morning and actually wanted to eat...just scoffed a big bowl of cereal...I think those drugs are going out of my system...I hope I can put a few pounds back on...not too many though as won’t fit in my frock for Miranda’s wedding!!!
Well I started the three first as recommended..Metformin membendazole and avordtstin...felt rubbish and stopped after about ten days...I’d not long finished my radiotherapy so thought it was maybe the side effects of that as well
Several of you ladies on here also suggested giving myself a break
Anyway I was so determined to crack on so I restarted August 8th but without the statin as I suspected that was the bad boy that was making me feel awful because of the side effects I was experiencing
Anyway I still feel horrible on just Metformin and the wormer....so I’ve given up
I’m intending trying the frnbendazole (sp) next month
For some reason I can’t access this in UK...what was the gist?
Barb xx
Oh Barb, so sorry you still feel pants.
Well done for being so brave, in both starting a new load of meds, and stopping them. You are much braver than I could be.
When I first started looking on this forum, your posts stood out to me. You are a go-getter. Now go-get your old self back.
My Mum takes metformin for her diabetes and she has terrible days of side effects. The people I see at work tend to suffer more from the side effects of medication than they do from the original health problem. So maybe, it was all a bit much for your body to cope with.
Thanks for that info re fembendazole...good to hear side effects are minor...very reassuring
I’m sorry to hear that you’re having mitral valve problems...makes my problem seem minor compared to what your having to deal with...I really can’t imagine it or give you any advice
All I can do is send you heartfelt good wishes for a resolution to your current predicament ...you’re a brave lady
I looked at Panacur and the small sachets of granules start at 1.8 g but it seems others take a smaller dose so I’m baffled...doesn’t take much to baffle me these days!!
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New drugs for mbc 
Moving on from Xeloda
Ibrance not working? Update
