Ringworm drug for dogs (Fenbendazole) might also cure cancer
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Yes, great shares ladies, thank you for the links. Loved the game theory article, I hope our oncologists pay attention.
Snooky, praying for a productive meeting with your doc this Friday. xo
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Snooky, my TM's went up every 6 wks while on X. It wasn't until lately with the big rises that we decided to switch. So because I felt well, we stuck with X, for almost 5 years. Again, as I have said many times, I have no pain. I think scans are the best story teller. I think you should decide if you want to stay on it or not.
My TM's never took such big strides as they have since I started FZ. Is that the reason? Who knows? Am I killing myself? Who knows? I will continue with it for now, with hopes that switching to Verzenio will help.
Simone, we miss you and pray you are ok.
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Hi Goldie,
I'm here. Everything is okay, I just haven't been posting a lot. That was so sweet of you asking.
Did they ever find any new lesions in your scans? It's so weird that your TMs took such a high jump. I know from just reading others posts on Joe's fb group some had the same issue.
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Simone, yes they found new bone lesions, pretty much everywhere from the knees up! I'm glad you answered me and glad everything is ok, but really meant Sonya. NOT to say that you aren't important, you are, we all are!
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Goldie, Sonia said goodbye a long time ago, no explanation given. She had been depressed, hopefully she is posting on other sites. I miss her presence as well.
Sonia, if you’re reading this, we hope you’re okay...that you’re feeling better!
Other sobering statistics about food safety in this country....
https://www.foodsafety.gov/food-poisoning
Food Poisoning
Food poisoning—any illness or disease that results from eating contaminated food—affects millions of Americans each year. While the American food supply is among the safest in the world, the Federal government estimates that there are about 48 million cases of foodborne illness annually—the equivalent of sickening 1 in 6 Americans each year. And each year these illnesses result in an estimated 128,000 hospitalizations and 3,000 deaths.
We have to be extra careful, since we are immune compromised....
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Yes Frisky, I remember her being depressed. Just hurts my heart when someone else is hurting. I think of her often. As for the food, one of the reasons I like to garden. And just because something says it's organic, it can be grown with GMO seeds. I asked that about our local farm that has a big corn sale and festival every year. I asked them if it was GMO seeds, they did not answer but said they don't use pesticides. Ok, you don't use pesticides.... because it's GMO seeds!!!!
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I agree Goldie, the laws are very relaxed about organic claims as well...I see it at my farmer’s market, everyone jumping on the organic bandwagon without any certification.
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Goldie, that's the problem. My TMS are lower every mo. Last check it was 16! And also, I think most of you know that the cancer grew on the outside of my breast (taxol knocked it back but when taxol ended it grew backquickly) But since on Zeloda the small nodules are once again mostly gone. It's just the Ct and bone scan that has me concerned. They were talking about things in my lungs that 2 yrs ago were deemed not cancer. Scar tissue. There are a lot of other inconsistences too. My problem is I don't have much trust in these scans. One person reads them and then decides my fate. I just don't know. Hope that my Onc has time for a long talk.
Thanks for all your input girls. I'm trying to put it out of my mind until tomorrow.
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Snooky, this disease is just all over the place, what works for one, does not for another. And so weird how your markers are so low. They have pretty much been reliable for me. Anyways, good luck to you and MAKE that MO have a long talk with you! And as for putting it out of your mind, good idea, as it doesn't change anything anyways. Huggles
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thank you sweet Goldie.
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Snooky,
I recently had an issue with the reading on a scan. I did some research and found that the Cleveland Clinic has a service where, if you get them a disk of your scan and I think the report, they will do a re-read of your scan. It is not covered by insurance, and it costs $300, if I remember correctly. Your MO needs to sign off on the form, bc I think they send the re-read directly to the MO. Here's the link:
https://my.clevelandclinic.org/online-services/myc...
I raise this because if you think that your scans might be screwy, you can ask your MO to have them looked at again where you got them (or ask your MO to pick up the phone and raise your concerns with the RO). Or you can do this kind of a double-check. In my case, my MO was horrified that I was going to go outside of their system for a re-read, but ya gotta do what ya gotta do. She contacted the radiologist who read my CT herself -- I wouldn't say that that resolved it, but it sorta did, and I didn't end up using the Cleveland Clinic service. But here you go.
Bev
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it's amazing the level of incompetence....all these stories only prove my worst suspicions...the blind are leading the blind...
Tumor markers are unreliable, pet scans unreliable, interpretations untrustworthy...whaooo..sometime I think we have more knowledge than all our doctors combined....
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Frisky,
I don't know about inherent knowledge (although, like you, I sometimes question that too) but I think that most docs are too wrapped up in too many patients, too many research projects, too much self promotion to rise in the medical/academic world, etc, and too much medical center politics, so some things we just need to focus on more than our docs do. With my most recent "Scangate," I literally created a word doc with language about the same area from no fewer than 6 different reports and with different scanning methodologies. I highlighted things, cross referenced things, etc. I have no special skills in interpreting these things -- it was just that some things didn't add up. That was the only way I could get my MO's attention, and only then did she actually print the report in question and run through it with me line by line, so I could show her the inconsistencies from prior reports. Had I not done that, I would be on the Piqray train right now.
It's just a lot.
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Reading a scan is a mixture of science and art. And of course the art is highly subjective. Plus you add in the inability to measure size accurately to within 1-3 mm and you have a situation where only very clear changes are certain progression or success. We've had a lot of frustration with one radiologist commenting on something another didn't, but was seen on a prior scan. Scary, when it could be progression, or simply it catches a radiologists attention or interest when another saw it as just background.
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BevJen...glad no piqray for you...people are getting off that one quickly...right and left...
Mo's must be making a higher profit pushing that one...
Glad you were able to get an explanation...the problem is that in our mental and physical conditions, we shouldn't have to worry about these things...
I believe, mos have given-up a long time ago. Patients, in general, are a constant reminder of how many people they lose on a daily basis...a source of embarrassment....therefore the defensive attitude...and lack of real care...they are just going through the motions...first and foremost on their mind is the financial benefit to the hospital, since they can't control patient's outcome...
Husband dear, I'm sure you are attentive in keeping your wife safe from these type of medical deficits...
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BevJen, yes, It is A LOT. It's really unjust how much cancer patients have to quarterback our own care, keep people on task, ask intelligent questions, self advocate, be the squeaky wheel. It was the part that made me melt down the few times I did melt down: why am I the one who has to 'ride herd' on all this BS when I am the sick one?? So exhausting to have to swim upstream the whole time. Hugs to you for having had to, but also high five for being (appropriately) pushy.
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santabarbarian--you said in your last post almost verbatim what my sister keeps saying to me about this cancer journey--she cannot believe how much we/I have had to drive this whole process ourselves. It is amazing for what is supposed to be world class medical care here in the States.
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Dear all, I am back. Wanted to say that my wife had a lung x-ray for that drop of liquid they found in MRI, and x-ray shows everything is fine, they don't even see liquid anymore. I am also sorry for those who suffer, dear Snooky, we are with you... my wife's TMs were always very good, CA15.3 never rose higher than 56 (only once but for other reasons). Even when last time she had local progression, it was 21. Our doctor says her's don't show anything. We are doing them monthly, and last was 14.7... They always got higher on chemo. I also know her's correlate with neutrophil count very well, as when once they were forced by Neupogen, CA15.3 suddenly skyrocketed to 56 but then came back to normal again... This is what explains it and good MOs have to know it: https://www.ncbi.nlm.nih.gov/pubmed/15386335. Hugs to everyone, Saulius
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Mysticalcity, unfortunately, the great care we get in this country is primarily hype. As far as health outcomes and longevity, people in Marocco and Cuba are doing a lot better than us, according to the WHO.
welcome back Saulius! Happy to hear all is well with your wife...I’m sure the additional care she receives from you is making a big difference to the outcome.
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Thanks for that article Saulius. Glad to hear your wife is doing well.
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Me too Saulius. Great great news.
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Thank you everyone for best wishes. Coming back to several discussions way before: I have a feeling FenBen and COC protocols work but it still has to be determined for what cancers and disease load, with what synergies with other drugs (as discussed before - maybe chemo or immuno, or mabs, remember - Joe took it with Pembrolizumab), in what amounts and ratios they have to be taken to be most-effective. Still many questions but these two protocols are quite logical and furthest from quackery. I asked COC clinical trial team for some hints or interim results but got no answer. Can maybe someone also ask Joe on FB (I don't have one) how's his register going? When interim results in research are more or less clear, they can be/should be announced, as results could be very important. Let's hold on and never loose faith, cures are out there, just we all (I mean all - we and scientists) have to work hard and find them. Saulius
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Anyone run across this before: Hydroxycitrate combined with alpha lipoic acid.
https://www.ncbi.nlm.nih.gov/pubmed/20372858
https://www.cancertherapyadvisor.com/home/tools/fa...
http://ar.iiarjournals.org/content/34/2/973.full
https://www.researchgate.net/publication/43051126_...
Also has been combined with a third ingredient, chlorine dioxide that makes it work even better for some:
https://www.cancertreatmentjournal.com/articles/ch...
https://www.cancertreatmentsresearch.com/community...
The chlorine dioxide seems to acidify the tumor environment. Here is an explanation of the effect of ph on various types of chemos. Some are improved by alkalinazation, while others are improved by acidification.
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so...some of these terminally ill patients that had a few months left, made a huge recovery with a non toxic antioxidants and metabolic approach to their various cancers...it's amazing how contradictory all these studies are....thank you Husband..it’s enough to get a cat spinning her tail....
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I am continuing to read up on the subject. It seems like a protocol called Metabloc consists of the hydroxycitrate and lipoic acid. It is effective on its own, and synergistic with a couple of chemos they have tested it with. Back in 2012 they were calling for clinical trials of this promising treatment. So far there have only been case studies on humans, no double blind placebo large scale studies. One guy had lung metastasis (renal cell carcinoma) back in 2008 and he is alive and well in 2017. I wonder why we haven't heard more about this combination? I could find nothing discrediting it, or showing dangerous side effects.
Everything you ever wanted to know about ph and cancer:
Spoiler alert: alkaline may not always be the most desirable state
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Both seem like normal supplements; nothing wacky. I take ALA already and may add the other one. Thanks for this info
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Both supplements block the fatty acid - ACLY pathway.
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A cancer-causing green slime was found oozing onto a highway in a Detroit suburb, officials say
A green liquid was found oozing onto Interstate 696 in a Detroit suburb Friday, causing authorities to block off portions of the highway and call in federal agencies to investigate.
Read in CNN: https://apple.news/A1wnMM2TASGeE5ffYP8q4rQThere's no mention, of course, of closing the place down and arresting the owners....nope, it will continue to go on....business as usual!
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hi everyone, Sorry I haven't reported back on my Fri's Onc appointment. Just kinda been in a daze trying hard not to think about cancer. Which is nigh impossible.
So, last I reported was my three mos scans on Zeloda didn't look good. The onc said said it's not working. I asked then why have all the nodules disappeared on my breast? He looked at it and started reading the chart again and said well it's definitely working there. He mentioned chemo. I said chemo for the rest of my life? He said, oh no no no there are other options. I asked if I could stay on Zeloda for a bit longer in hopes that it might start working on the spine and lung nodules. He said Yes, but we'd scan in 2 mos and then decide. He wants me to go on a chemo called Havalin? Apparently it's different. Not a slow drip but a 2-5 minute push. Every two weeks. So, I wait and pray. And sleep. My gosh that's all I do.
I'm not on the Fenben. I quit that a couple of months ago. Not sure why, I just lost my faith in it. I can hardly go to Joe's website. Lately all I was reading about was death. I rarely saw anything about breast cancer.
Joe came on once and said that the protocol was 50% faith and positivity, Guess I lost that. Don't know just been a hard two days. Between cancer and a couple of other things going on.
Oh, I did ask Onc if staying on it and it not working for two months was dangerous. He said no. Your kidneys are good and your liver is good. He said my numbers (blood tests) were great, they always have been. For some reason that depressed me. Scans that I have no faith in, TM"s that go down every month (I'm at 16 now) and now numbers that say I'm healthy. It's an insane world we live in.
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Snooky there's a lot of good news, don't let the rest bother you. I'm glad you asked to give xeloda more time, sometime I wonder why we change these treatments so quickly when they are all bound to fail us sooner or later..I would rather keep taking the ones with the least se. Let's face it, taking a pill is a lot easier than having to go for infusions....I hope xeloda totally works out after all...
Yeah...I'm getting tired of the FZ as well, I switched to the doxycycline recently...I might just finish using the remaining boxes when it's time to switch...it's been very disappointing...I agree...I have been very sad lately...I'm starting to see every cancer treatment orthodox or unorthodox as hype and all doctors as clowns...it's not a good place to be. Hopefully, I'll snap out of it...and yes I completely agree, we live in a crazy insane world...where nothing makes any sense anymore, the emperor has no clothes and we are asked to be in denial....so we won’t go insane..
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