I have estrogen positive stage 4 metastatic breast cancer with Mets to bones and liver diagnosed 6/2/20. I’m sure I had this six months earlier but could not get a Dr appointment except tele health bc of Covid. When finally diagnosed my bones were so brittle that I had to have a hip replacement and a rod placed in my right femur. I fractured it stepping off my bicycle. My 15.3 cancer antigens were 1081 6/30/20, 425 8/19/21, and now 10/12/21 going up since 6/29/21 now 550.
My cancer antigens 27-29 were 1042 6/30/21, down to 410 9/17/21, now 10/12/21 up to 532.
I’ve gone through 3 oral chemo, Ibrance, 11 month, Piqray 10 days and now Xeloda had stopped working after 5 months.
Started Joe’s protocol 6/19/21. Since my antigens have started going up and cancer lesions on my liver are getting larger and spreading, I'm wondering, does that mean I’m not a candidate for Joe’s protocol? I stared with 222mg, then 2 x’s day, and for the last month 444mg 2 x’s day. My oncologist would not talk to me about Fenbendazole so I’m taking it without her knowledge. My last Xeloda was October 6 so I’m now on no chemo until I see her 11/9/21. I’ll be taking a couple of trips and did not want to start the IV chemo until I return (Gemzar) one day a week for 3 weeks and off one week. Has anyone taken this and what are your results?
On November 1st, I have an appointment with the Mayo Clinic in Jacksonville, FL for a second opinion so my big question is should I take more Fenbendazole or less or stop it all together. I’m taking it 7 days week. Should I take 2 or 3 days off bc of liver Mets. My liver enzymes are all in normal range however, I’m taking Tudca for liver support. I have a lot of pain that feels like indigestion but wondering if some of it be possibly my enlarged liver pressing on nerves which I recently read could happen.
Hopefully the oncologist at Mayo can give me answers since my oncologist is not okay with discussing anything outside of standard of care. Thanks for any advice and blessings to you all. Big hugs, Sandy
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Hi Kelly,I communicated with you before. Unfortunately I can’t answer your question but would like to o ask you mine. I was taking Xeloda for 2 weeks and my liver enzymes got 3 times of the normal range. My MO took me off for the second week. What is tudka? I have widespread bones Mets and recent liver one. Please share your experience with Mayo Clinic. I wondered if I should go to MD Anderson or Mayo? I live in Florida now. Thus, Mayo is closer. Recently one lady here shared her experience with MDAndersen and it was not a good one. They offer you to participate in their trials but besides that they offered her the same standard care options.
TUDCA Liver Support Supplement, 500mg Servings, Liver Health Aid for Detox and Cleanse (60 Capsules, 250mg) Genuine Bile Acid TUDCA . I bought it from Amazon. Many people take Milk Thistle for liver support. I can't bc I'm estrogen positive.
Hi Kelly,Thank you so much. I am also er plus but I was thinking of taking milk thistle. Where did you get this information from? Are you sure it’s not interacting with Xeloda I was told that every supplement we have to double check with the pharmacist or the MO. But usually they do not know it. I believe you are still taking Xeloda and going to Mayo Clinic soon. Right?
Xeloda quit working for me and have not taken it since October 6. Until my appointment with Mayo, I’m only on JTP along with several other supplements.
Hi Kelly. I see. I am sorry. My disease also progressed I just started Xeloda but my liver functions went up very high. How were your. Liver function while on Xeloda? My Alcaline phosphate is 301 normal 130. Also what Mets do you have. Good luck in Mayo. When is your appointment? Best
My liver enzyme has been in normal range so far. JTP is a combination of Fenbendazole, vitamin E, cucurmin and CBD oil. Mayo is November 1st at 1:15 pm. I have Mets on my bones and liver. Seems my bones are stable but liver Mets are enlarging and spreading. I have pretty severe stomach pain. Not sure if it’s indigestion or liver pressing on nerves which I’ve heard can be an issue. Not sure what to do about it. I’m taking so many supplements now, don’t want to add pain meds plus afraid ibuprofen is hard on the liver. Any advice? Jane McLellands book, HOW TO STARVE CANCER is a wealth of information.
Thank you Kelly for your reply. Sometimes supplements can cause problems as well. I try to check with the doctor. I am glad that your liver enzymes are normal. People were sharing that Fenbendazole caused pain. I have not heard about it until I read it in someone’s post. I also read that some people had liver embolization. Has your doctor talked about it?Marina
Hi Kelly. What is JTP? When is your appointment in Mayo? I hope it goes well. Please let me know what treatment plan they would suggest for you. Good LuckMarina
I am really not sure FenBen is a great idea. I tried it for a couple of weeks and had terrible abdominal issues (perhaps I had worms—possible as I have dogs, chickens and horses) as soon as I stopped, they resolved.
At any rate looked in the mirror and asked myself why I was swilling dog dewormer because some guy on the internet said so. 🤷♀️🤦♀️
Honestly with all of your complications, I would not take anything not recommended by an oncologist or a bona fide nutritionist or naturopathic. By bona fide I mean someone who understands standard of care and works to support it, not who promises an alternative “cure”
I am all for supplements to improve overall health, lower inflammation etc. but it needs to be done in synergy with your primary oncologist.
Ibrance for 11 months, Piqray for ten days with horrible side effects until day 10, when I had to go to ER with anaphylactic shock, now Xeloda has quit working after five months.
Hi Kelly, I had horrible side effects from Piqray. You mentioned about three oral chemo drugs. I only know Xeloda. What is your current treatment? I just started Xeloda. This is my fifth line over two years of treatment I just got off the Facebook group on ErSO. Hope for that drug but it takes time. Best
My oncologist wont advise outside of SOC (standard of care) however, my stand is that he knows what I am taking.. so I tell him. I was taking mebendrazole for a few months, am taking a break at the moment (also on xeloda) I will start Metformin after my next scan (you need to stop taking this a few days before and after CT scans as it can affect results) I had a consultation with the Care Oncology clinic in london (US clinics available) however it is expensive (although good 'value') The other the items they advise (a statin and an antibiotic) I decided not to take - I can get the metformin and mebendrazole without a prescription, so I stopped the clinic sessions - too expensive for me long term anyway.
I'm SO SORRY that you are going through this! Have you had bloodwork since starting the protocol? I'm wondering if its interfering with the medications your on since the med change. At this point I wouldn't take anything without your oncologist approves. You must be so scared- my prayers are with you.
Yes ever since I started it. Randomly the 5 months one going up and one going down which has really baffled my oncologist. This past lab, both going up.
I always feel it's important to let our oncs know what we are taking. I also know that each of our cancers is different. What supposedly worked for Joe, may not work for us!
Let us know what the results of your Mayo Clinic visit are.
I would continue. From what I read it can take months to get results. Have you gone on the Facebook page mycancerstoryrocks by Joe Tibbens? You can type in you type of cancer and see results and fenbendozole dosages from others who are on his protocol. I am on careoncology.com protocol and have b/c. I have only been on for month with ibranxe and letrozole. I am currently stable with no progression hoping to get to NED. Praying to God for strength and healing in you.
I have been taking some liver supplements but mostly for the liver nerve pain, what helped relieve it was pain patches all over the right side of my back and up under the shoulder blade, etc. They only work for 48 hours but were quite helpful. Once the taxol started to work to reduce, the pain subsided for the most part.
Thanks. I appreciate the warning for those of us that didn't know this.I stay away from soy yet I do not there contradictory studies about soy and BC. I have not made up my mind yet! I am glad I am alerted!
I cannot advise you, not being qualified to do so, but I can share my thoughts on Joe Tippens and fenbendazole. I too am stage 4 BC, currently in remission and in excellent health. I refuse to accept that death is the only outcome for me so I have looked into a lot of alternatives/additional protocols. Joe Tippens' story is remarkable. Following surgery, his lungs were clear but a scan showed that the cancer had metastasised all over his body. His oncologists held out no hope of living beyond the next three months but offered him a clinical trial for Keytruda to try and extend life a little, which he accepted. He was the only person in that clinical trial to have such a staggering result. I believe everyone else on it succumbed to the disease within the expected time frame. Joe has not been treated by MD Anderson for some considerable time, running into years and is now just having a scan every 6 months. His oncologist said:
"You know, we've known for decades that these anthelmintic class of drugs (meaning to destroy parasites in the intestines) could have possible efficacy against cancer, and in fact in the 80's and 90's there was a drug called Levamisole that was used on colon cancer and it is an anthelmintic drug".
Following his success and that of other people who have followed in his footsteps, the Oklahoma Medical Research Foundation along with a couple of other prestigious institutions, have begun to audit the success stories and have already begun to publish some positive results (for genito-urinary malignancies, link in Joe's blog). Odds on there is more to follow. The big problem is, under the current system, this and many other off patent drugs and other herbs and supplements are unlikely to have clinical trials done. Trials are expensive to do and there is no money to be made at the end of it because patents are not possible. This is no one's fault, just the way the system is set up. Joe Tippens has been scrupulous never to make money out of his recovery. He simply wants to spread the word to give other people a chance at life too. For anyone who believes fenbendazole might be of interest, Joe's blog is a must read, ideally several times through:
I have taken fenben for months at a time without ill effect and will cycle it again in the future. However, although there are anecdotal success stories for breast cancer in Joe's Facebook group, I believe that hormone driven breast cancer sufferers often need to do more, especially in the absence of an aromatase inhibitor. My research has led me to Abbey Mitchell. Like Jane McClelland, Abbey seeks to block the pathways by which cancer fuels itself. However, rather than using drugs which many of us cannot get hold of, Abbey uses OTC drugs,supplements and herbs. She and Maria Wessling Bachteal researched for years to come up with their worksheets:
The information therein is not intended to replace standard of care treatment. That said, Abbey herself who has stage 4 lobular BC with extensive mets, is clear of all trace of cancer and has been for months, running into years.She is no longer on any form of hormone therapy. I would just say, we are all on an arduous path that none of us have chosen. Walk it we must however and it is up to each of us to find the way through that we are most comfortable with. I will leave it to anyone interested to follow the links and make up their own minds. Best wishes to everyone.
Thanks so much for your response and detailed info. I have been on Falsodex injections for about 16 months. My oncologist says when I start the Gemzar IV, I will no longer take Falsodex - not sure why. 💕💓💕
Hi Sandra?It’s Marina. I got the blood work taking again today after two weeks off for Xeloda. Two of the liver readings went down slightly AST from 109 to 72, AlT from 128 to110 but one Alkaline phosphates jumped up very high from 187 to 301. Norm is 35-130. What can it be? My tumor markers after two weeks on Xeloda went slightly down as well.
Kelly, in regards to taking the Fenbendazole, I think your dosages are on the high side. The protocol states to take 3 days on, 4 days off, only 222mg once a day. I have been taking the full protocol for 10 months. (I use the goat liquid form, which is about a half of teaspoon) The reason for the "days off" of the Fenbendazole is for your liver health. I have no issues with this dosage and actually prevents the constipation that normally occurs with taking the opioids for pain.
I am not being seen by any cancer doctor due to there is nothing more they can do for my bone Mets and all my tests done never showed any cancer. (Likely due to the curcumin I was already taking) So in other words I had nothing to cut out cancerous or complete chemotherapy on.
I had pins in my hips and rods in both femurs to prevent more fractures. Yes it's painful, but my primary doctor says "what ever you are doing, keep doing it" The progression of Mets are not occuring.
I wish more patients would do more research on this protocol. It has an exceptionally high success rate and in proper dosages, does not cause harm to your health.
How has everything been going for you? I’m on a couple of FB groups on fenben for a couple of months or so and the positive results I see are staggering. My oncologist wants to research more on it before I go back on it, and there’s some clinical data the group sent me that I’ll post here about it, which I’m going to send to him soon. Also, you may already be doing this, but high dose melatonin is also encouraged on the protocol (or off, for radiation and scan support, etc) I have a video on that which I found really educational. Hope all is well with what you’re doing and that it’s helping!
Hi ! I stumbled on this post researching FenBen. I’d be curious to get the link of the video you suggested. I too stumbled on the FenBen Facebook group. How’s your success rate? Blessings !
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Xeloda coming to an end!
Former art teacher with a passion for travel
New here. Would like info on bone mets....
