I know this topic is a bit old hat but I just wondered who takes CBD oil and if it’s safe with Ibrance/letrazole combo
I have asked my oncologist in the past about various supplements and she’s not very forthcoming and just probably not interested
I’m sort of doing Joe Tippens regime which includes the oil and I’m also getting cold feet about the fembendazole as the little voice in my head tells me that he can’t possibly prove which of the supplements ‘cured’ him...if at all
I don’t want to miss out on anything of benefit in the fight against mbc but I’m so weary of things that are suggested by someone then someone else will disapprove of it and nobody seems to know for sure about anything
I’m totally bloody confused
End of rant
Barb xx
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did you know if you go on facebook and type in mycancerstory.rocks there are many people on there talking about their experiences with the protocol? <3 xo GBY!
I've taken CBD oil since my diagnosis in March of 2018, as my oncologist at Dana Farber said it was fine. The brand I like is called SunSoil and I found that it has helped me tremendously in terms pain.
Same here. I use CBD oil from a place near Dana Farber in Boston. I had tried CBD with hemp and it was foul tasting. Get the real thing. I prefer very low THC in my CBD oil because I’ve never liked the high sensation. This dosage works well for me when I’m anxious or having trouble sleeping. My oncologist is from MA General and is ok with this.
I would not hesitate to find some CBD that suits your needs. Good luck
I do. Why not try Fenbendazole until your next Scan then see if you have improved results? If you stay on it 2-3 mos, with no improvement stop taking it. Just a thought. ❤️🙏❤️
Totally understandable re being confused. Google 'research into Fenbendazole'. Lots of evidence re anti tumour effect. Its been known for a long time. Combining it with supplements/vitamins is also reported on.
Xx
My oncologist is not keen on some of these alternative methods. Mostly because some of these people are misleading others. One man who has a following claims his cancer was cured by his method but it was actually cured by surgery. His surgery completely removed all of his cancer and he had follow up chemo and radiation to ensure it was all gone. His method has nothing to do with it. I don’t know which man it is but my oncologist told me that he knew this as he had spoken with the mans surgeon.
Anyways, I have used CBD for a year after my doctor referred me to the clinic. They were great and asked lots of questions so they could recommend the type of oil that best suits my needs. I use one with I my trace amounts of THC. Some can be high in thc and there are many kinds as they are out in different carrier oils and/or are different strains. It didn’t really make any difference in how I felt or with my cancer. Some people swear by it so give it a try.
Barb - can you get CBD oil with low THC versus hemp? I ask because I tried the hemp CBD oil first and it was positively nasty tasting. I much prefer the NETA brand available in MA.
I have used CBD for sleep with some success. I had radiosurgery on two areas of my spine today. I may try the oil for the significant ache if it doesn't ease up tomorrow.
I ordered fenbendazole, but I'm having second thoughts. I ordered it because of 3 new lesions on my spine after starting Ibrance/exemestain in February. My onc suggested moving me to fulvestrant, but I am TERRIFIED of needles, so he agreed to stay the course until the next scan, thus the fenbendazole.
If I do have to change, I may have to find some CBD with serious levels of THC!
Barb, are they going to do the biopsy of your liver?
I’ll find out on Tuesday re biopsy but doubt at as apparently it’s deep inside the organ
I’ve got to a point recently where I don’t care anymore...like you I’m dithering over the fembendazole...it upsets my tummy a bit and I think it’s the latest ‘craze’ for cancer sufferers
I had a really bad experience with an IV infiltrating when I was in my early 20s and I think I had a bit of PTSD about needles. I could tolerate shots when I had to have them, but was more nervous about needles than before. Right after being diagnosed with mbc I realized I would be seeing alot more needles and that it would be a good idea to "make friends" with them. I had to work really hard to do that, and most of it was just in my head! It's really worked well for me, and I am surprised that I can even watch the needle go in now. I was on Faslodex (fulvestrant) for over 9 years, and alot of the women I've known who have had E + mbc have gotten alot of time from it. If there is any way for you to get past that terror, it would probably be worth it for you! I know it isn't easy! It can help to focus on something other than the pain that the needle poke can cause. There is also a salve that reduces the discomfort ---I can't think of what it is called.
Thank you very much for the suggestions and the understanding. I've got to do something. I have an appointment for hypnotherapy and have looked at nitrous oxide cartridges. I had SRT on my spine/sacrum Thursday. The rad onc wanted to give me a steroid injection, but I refused because of my fear. I'm definitely paying for it!!
Good luck with the scan and possibly biopsy results. It is easy to become exhausted with the relentless fear and bad news. I broke into tears 3 times at work today and yelled at my 84 year old dad who was just trying to plan my birthday dinner. You hang in there. We're all pulling for you.
Oh I know how you felt...I had a shouting at my husband scenario yesterday over the blasted Christmas tree!!!... I wanted a real one this year but he was moaning about the cost/mess etc and why bother when we have a nice fake one
Well I lost it and shouted at him saying it’s probably my last Christmas etcetc
Anyway I can’t be arsed now so dragged the old tree out last night and chucked baubles on it but wasn’t in the mood
Small things can really get out of context and be upsetting for us...understandable
My birthday is in February and I don’t feel like I want to celebrate it either
My onc has no objections to cbd oil for pain or nausea. It doesn’t claim to cure anything. Just helps with some unpleasant side effects. Better than oxycodone.
I truly think we need to be careful about taking anything not approved by our oncologist. It would be horrible to take something that might effect the efficacy of our chemo. I don't read books about curing cancer because one person's story is not proof. It might be healing to write their story, but we won't know if they were truly healed until they die and an autopsy is none. And actually hundreds would need to be scientifically followed for answers. I would run everything by my oncologist.
I don't mean to sound like a preacher but we just can't do everything someone says worked for them. We need scientifically proven information.
I'm so with you on the many conflicting opinions on treatments. I do take CBD oil, and I've taken it since before my diagnosis. I take a squirt under my tongue before I go to bed. I find that it is very subtle. It helps my anxiety, helps me sleep a bit more soundly, and my tense muscles tend to relax a bit more. If it's doing more than that, bonus! The only reason I know it helps is that I notice a difference when I don't take it. My oncologist is fine with the CBD oil.
As for the Joe Tippens treatment, my oncologist is very research based, and doesn't feel there has been enough research on the fenbendazole. He wasn't against me trying it, but he also wasn't thrilled about it. I've decided to trust him as my bone mets have shrunk on Ibrance/letrozole/lupron. I also don't see how Joe T. can be sure that it was the fenben., but if it makes someone with our diagnosis feel like they are doing something positive, it's worth it!
I've had well meaning people suggest every "cure" in the book, from Tibetan herbs (which are intriguing, but gave me a horrible vomiting reaction), to coffee colonics. For now, I'm holding on to 125 Ibrance, although that 3rd week is tough. I supplement with Biotin for my hair and nails, Turmuric and curcumin, magnesium and CBD oil to help me sleep, and Grapeseed extract for my insane hot flashes and night sweats. If a supplement doesn't show a positive effect, I stop taking it.
Like all of us, I'm trying to adjust to living with cancer instead of dying of cancer. It's a tough road. I'm just so happy to have found this website where there are women who understand!
Quite a few ladies have had the go ahead to use CBD oil which has reassured me
I totally agree with you about the Joe Tippens protocol and it’s due to the internet that anybody even heard of him....I’ve read lots of books about so called cures and I get all enthusiastic about something then the voice of reason tells me not to be so gullible...these people though probably well meaning make cash out of it as well!!
I’m not a vegetarian I drink milk and love yogurt and cheese and I’m not giving those up...I did try the non dairy milks and I’m not keen on them unless in porridge
We really can't be sure of anything. We just have to put our faith in God's hands if we believe and in our oncs hands.
From what I read about this Joe Tippen guy, he had treatment even with an experimental drug before his other stuff. Who the hell knows what worked?
Go with your gut when you decide what to do and keep talking with your onc and maybe a pharmacist who is familiar with mbc drugs and alternative treatments.
I feel the confusion you feel. We are all so desperate for a cure we kinda want to believe everything from herbs to dog dewormer will work. If it did, I'm beginning to feel that our oncs would tell us to take it. But, that's just me.
That’s why I like having my medical marijuana certificate and going to the dispensary. There is an actual pharmacist on sight and you know you’re getting pure cbd etc. I don’t care for thc with it but there is what’s called thca that gives you all the benefit of thc without the high.
I take cbd oil to help me sleep and for pain I have my medical marijuana card. I went thru my Ongologist who recommend to me who to see to get approved.
Hi Barb I live in USA in Connecticut. I find it very expensive at the dispensary also but it does help and I use a spray under my tongue and a small bottle does last a long time. The only thing I did notice is I feel a little more tired thruout the day when I use it to help sleep at night.
I am also on the ibrance letrozole combination of drugs. I started in May of this year - so it is about six months. I tolerate it well and my scans show my tumors are shrinking. I have thought about adding cbd but have not done it yet. It is difficult to get my doctors to agree to approving it. They seem to be very stuck in what they were taught. It is all very new but I don't think it would hurt to try it. But if I hear anything about it that might be useful to you I will let you know. If I decide to try it, I will also let you know. I might wait until after my next cat and bone scans. If I continue to improve I will not likely use it but if my progress slows down I will add it to the mix. Right now I am very focused on nutrition. Some naturopathic doctors and holistic oncologists believe a plant based diet is the key. Good luck
Joe Tippens is from Oklahoma, and I live in Texas, he did come to MD Anderson, and that is proven fact about his condition, it has been verified through MD Anderson. I hope the following information helps you in your decision.
This is the site for the medical studies remember physicians do not accept anything as science until multiple studies are completed....which can takes years before a protocol is accepted by the AMA. ncbi.nlm.nih.gov/pmc/articl...
As an adjunct to my main oncologist, I am seen at the Osher center for integrated medicine at UCSF. UCSF itself is a major teaching hospital in San Francisco , one of the top in the US. There are a couple of very respected integrated oncologists at the Osher center.
I know you’re in the UK, but their website has some good information You might find it interesting if you root around on it. (google “osher center UCSF). Before I went, I learned a lot just from their website and watching videos by a Dr Abrams who co wrote the textbook Integrated Oncology. (Available on Amazon. Dry read as it’s a textbook, but also interesting). His other job is head of oncology at San Francisco general hospital, she he has a foot in both types of medicine.
No one at Osher makes claims re having a secret “cure”. The recommendation is to stay on standard care but to combine that with complimentary medicine. There are a lot of good ideas for palliative and supporting things one can do. Most of what they recommend is at least evidence based if not research driven.
I decided to get most of my non-traditional advice there as these are bona fide oncologists and doctors at a center run by a major hospital.
Of course my main Onc. Rolls her eyes a bit at the mushroom supplements and green tea, but she doesn’t say don’t do it. And my integrated doctor rolled his eyes when the main Onc said added sugar is OK as the pancreas can deal with it. (Integrated doc says no to anything processed or with added sugar)
So I take my Ibrance and Anastrozole, , am about to start Xgeva, but avoid sugar, eat a plant based diet and drink green tea because I like it. Sometimes I do eat a bit of something sweet, and thank my pancreas for obliging.
I think one of the best things about the twenty first century is the access we have to state of the art drugs. Say want you want re big pharmaceutical—and they do have sins to atone for, but there are many very dedicated researchers really trying hard to crack complex disease. Look at HIV AIDS. It was a death sentence in the 1980s. Now, at least in the developed world, it’s treated as chronic. That is not because of woo woo alternative medicine, it’s good old fashioned research and money. Hopefully breast cancer is headed in the same way.
He was one of the original researchers in its use with AIDS patients many years ago as well. He must think I’m too straight and middle aged as he did not suggest it to me. Just lots of broccoli. LOL
I’ve discussed CBD oil with my onc and she is fine with it - despite the warning on the cbd oil that says don’t use if taking meds that ban grapefruit juice (Ibrance). She also says not enough research has been done to support any positive claims from using it. I tried it for a bit and found no benefit.
We all get down, sometimes for a while, because we are trying to fight the best fight possible when we don’t really know if any good is coming from the latest craze. Also constant pain can wear us out.
Luckily, each new day brings plenty to be thankful for so I start living life again as normal as I know how relishing in the love I have around me and contemplating that there are no guarantees to this life.
I’m fairly new to the rollercoaster so I certainly don’t have any answers, just one data point, me. I hope that you’re able to round the corner soon and get back to enjoying the things and people you love.
Thank you for your information on cbd. I guess results for these kinds of natural drugs are not abundant. I think the medical system is still very much focusing on chemotherapy and radiation. I wish we all had some real studies to rely on.
Barb — I’ve shared this before and am happy to do so again. With my oncologist’s approval, I use CBD tincture. It is very low THC as I don’t like that effect. When stressed, I take either a 1/2 dropper size or full. It helps in small ways. Some times when I can’t sleep I take it too. I do not recommend hemp oil which has a foul taste IMO.
I tried with the CBD oils last month and I want to say that I did not like it. Personally for me a good and high quality weed is much more effective and cute because it helps me relax and fight insomnia which has been dressing me for many weeks. Moreover, why should I use the thing, which I don't like, I'm talking about the CBD oil, when I can use the weed, because it's legalized in my country? I have known about it from the topic urbanaroma.com/buying-weed-.... It seems to me that CBD oils are a thing of the past and cannabis continues to thrive and gain popularity. Isn't it?
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