Abemaciclib Verzenio for Stage IV

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  • JFL
    JFL Member Posts: 1,373
    edited July 2018

    Luce, so envious your friend grows and pickles ume plums. My mother has a friend that does as well. She sent me some one time and they were amazing. I have also been consuming ume from a young age - as young as I can remember. Our house was stocked with all the various ume products as a kid. My parents were strict macrobiotic hippies back then. Thanks for your post. Many things to consider. I do wonder if we can truly alkalize the tumor micro environment (without damaging other organs or poisoning ourselves). Our bodies are set to restore a balanced ph for good reason. Keep us posted if you speak to Dr. G again.

  • s3k5
    s3k5 Member Posts: 411
    edited July 2018

    Hi Everyone,

    I was on Ibrance for about 18 months and then due to slight progression in bone mets, my onco switched me to Verzenio monotherapy. I have taken this for 2 months with minor side effects. By 7th and 8th week on Verzenio, I started to have severe stomach burn and cramps. So my oral chemo was stopped 3 weeks ago.

    Saw a GI specialist who did an endoscopy today and found a large ulcer in my stomach along with inflammation.

    Has anyone had this side effect with oral chemo? Curious to know if Verzenio or Ibrance affects the stomach lining. I also take NSAID for pain which may have contributed to my stomach problems.

    Thanks for any information on this,

    Sandy

  • sandilee
    sandilee Member Posts: 436
    edited July 2018

    Hi S3K5.

    I don't know the answer to your question about Verzenio/Ibrance and the stomach lining, but I have not read anything about Verzenio that would make me think this is an issue. I know for a fact, though, that NAISDs can cause stomach ulcers. We have all taken these over the counter drugs at various times, and there are warnings on the bottle about stomach perforation with them. I they are especially hard on older folks. What can be done for your ulcer?

  • luce
    luce Member Posts: 361
    edited July 2018

    i agree with sandilee, and am guessing it's the NSAIDs: i am in love with ketorolac, the only pain killer that has ever worked for me, for example, but it's extremely hard on the stomach. verzenio feels (to me) like it's wreaking havoc mostly inside the intestines.

    so to get back to drugs (verzenio, keytruda, etc.) probably working better in alkaline tumor cells and -tissues, i posted the below on a FB group. let's see if i get anything useful back. i think we should keep asking the study authors and our integrative oncologists (or even the mainstream ones) about this. there are clearly reasons why a drug may not be working for a person, or may stop working. most of those reasons are unknown at this point, but acidic tumor environment (protecting the tumors) could be one of them. so i think it may be worth to keep looking into this, given that the studies supply pretty compelling clues.

    "Questions regarding tumor cell and -environment, triggered by the study referred to therein:
    https://www.sciencedaily.com/releas…/2018/…/180601134720.htm
    (which is also mentioned somewhere below), and this earlier study:
    https://www.ncbi.nlm.nih.gov/pubmed/26719539

    I have been looking into the issue for a while, hoping to be able to make my targeted therapy last longer by interfering with the mechanism that makes tumors resistant over time. Also thinking of adding Keytruda, and given its side effects, I would want to create the ideal conditions to facilitate a response.
    Below is what I am brainstorming. Any somewhat-informed input/educated guesses would be much appreciated!

    Jane McLelland: " This suggests that sodium bicarbonate makes the cancer more aggressive by 'waking up' the stem cells and creating more fast dividing cells. In that case it shouldn't be taken unless you are taking either chemotherapy or another targeted therapy at the same time."

    Okay, but if you are having chemo or targeted therapy or immunotherapy (I am on targeted), then alkalizing the tumor cells and -environment and thereby waking up stem-cell-like quiescent cells by restoring their circadian rhythm would be desirable, as those are the exact cells that survive (by going quiescent) therapies aimed at fast-dividing cells. So how exactly do I do that? Might alkaline water accomplish this? And it has been shown in these and other recent studies that, yes, blood ph is tightly controlled, but it is still possible to alkalinize tissue, and particularly tumor tissue, with oral agents. Might this be why alkaline diets do seem to work for some people? And if the tumor environment is acidic because the tumor cells' metabolism's glycolysis end-product is lactate (which may feed nearby tumor cells that derive energy from lactic acid fermentation), would/does a ketogenic diet alkalinize the tumor environment (and cells) by restoring tumor cells' mitochondria and respiration? And if so, why is a ketogenic diet apparently not dangerous (by waking up these aggressive cells) in absence of chemo or targeted therapy?
    And if TUMS (calcium carbonate) and baking soda can be used to accomplish the change from acidic, hypoxic tumor cells and -environment (acidic tumor environment may shield cancer cells from chemo or targeted therapy or immunotherapy), might a mineral mix that is more balanced, less hard on heart and kidneys, and easier absorbable (than sodium bicarbonate and calcium carbonate) do the same (1:1 calcium citrate: magnesium glycinate, plus potassium citrate, sodium bicarbonate, etc., say)? So my guess/hope is that, unlike in the study, where baking soda in drinking water is used (which will affect stomach pH and perhaps digestion), the same effect could be accomplished with minerals bound to citrates (once they uncouple, they should still be alkalizing to tissues) or with alkalizing diet/foods: umeboshi, ume, a/c vinegar, lemon juice, even coffee (which seems to be alkalizing after first having an acidifying effect for about two hours), vegetables,...
    Also, once the cells are no longer dormant in an acidic environment, how do I add oxygen to help kill them through oxidation, if i cannot afford hyperbaric oxygen? (i am in the US; it's expensive.) insufflated ozone? (also expensive, but less so.) might an oxygen concentrator help? how high would i have to crank it, and how long for (overnight?), to hit some sort of oxygenation target that has been shown beneficial? And might it be wise to add artemesinin at that point?"


  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    For what it's worth, in the words of MD Simoncini, the MO that has been using 5% bicarbonate of soda solution to get rid of tumors for the last thirt years:

    “With the aim to reach the maximum effect, sodium bicarbonate should be administered directly on the neoplastic masses which are susceptible of regression only by destroying the fungal colonies.

    This is possible by the selective arteriography (the visualisation through instrumentation of specific arteries) and by the positioning of the arterial port-a-cath (these devices are small basins used to join the catheter). These methods allow the positioning of a small catheter directly in the artery that nourishes the neoplastic mass, allowing the administration of high dosages of sodium bicarbonate in the deepest recesses of the organism.

    With this method, it is possible to reach almost all organs; they can be treated and can benefit from a therapy with bicarbonate salts which is harmless, fast, and effective with only the exception of some bone areas such as vertebrae and ribs, where the scarce arterial irrigation does not allow sufficient dosage to reach the targets.
    Selective arteriography therefore represents a very powerful weapon against fungi that can always be used against neoplasias, firstly because it is painless and leaves no after effects, secondly because the risks are very low.

    Generally speaking, the maximum limit of the dosage that can be administered in a session gravitates around 500 cc of sodium bicarbonate at five per cent solution, with the possibility of increasing or decreasing the dosage by 20 per cent in function of the body mass of the individual to be treated and in the presence of multiple localisations upon which to apportion a greater quantity of salts.

    We must underline that the dosages indicated, as they are harmless, are the very same that have already been utilised without any problem for more than 30 years in a myriad of other morbid situations such as:

    • Severe diabetic ketoacidosis
    • Cardio-respiratory reanimation
    • Pregnancy
    • Haemodialysis
    • Peritoneal dialysis
    • Pharmacological toxicosis
    • Hepatopathy
    • Vascular surgery


    A therapy with bicarbonate should therefore be set up with strong dosage, continuously, and with pauseless cycles in a destruction work which should proceed from the beginning to the end without interruption for at least 7-8 days for the first cycle, keeping in mind that a mass of 2-3-4 centimetres begins to consistently regress from the third to the fourth day, and collapses from the fourth to the fifth.

    These are the latest news regarding bicarbonate of soda treatments.

    https://www.medicalnewstoday.com/articles/322009.php

    Antifungal drug kills dormant colorectal cancer cells

    Maria CohutSunday 3 June 2018

    Bicarbonate Increases Tumor pH and Inhibits Spontaneous Metastases

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2834485/


    How might baking soda boost cancer therapy?

    Researchers describe how acidity turns oxygen-starved cancer cells dormant and drug resistant -- and a potentially easy way reverse the effect.


    https://www.sciencedaily.com/releases/2018/06/180601134720.htm

    "If you wish to seek peace of mind and happiness, then believe. If you wish to be a disciple of truth, then investigate." Fredrick Nietzsche

  • luce
    luce Member Posts: 361
    edited July 2018

    yes, that is interesting, but i am not convinced about fungal theory. also, i am trying to accomplish something different: make abemaciclib work better and for longer, and give kytruda (should i stop sitting on my hands and actually try it) the best chance of working. so i am looking to replicate the effect in the study: alkalizing tumor environment through ORAL administration of an alkalizing agent. (i mean, how am i going to administer it intra-tumorally by myself anyway?)

    i mean, sure, he is probably on to something, but so are many other half-crazy, half-correct doctors with tunnel vision. the acetic acid guy in mexico, say. or people who insist DCA will kill all cancers.


  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    You can't administer the bicarbonate to the site as described, that's why I sent you the info. Right or wrong, the only problem is that this particular MO theories and therapies are being currently proven to be effective against all sorts of cancers in clinical trials conducted by people that have no interest in proving him right, therefore the addition of chemotherapeutic agents that we all know fail us sooner or later. The bicarbonate however doesn't fail when used properly. SillyHeart

    If i didn't have systemicbone cancer I would rush to be treated, as I don't see any downside.

    Best way that I know to alkalize the body is by ingesting alkaline foods such as fruits and vegetables and reduce acidic foods such as coffee, chocolate, meat, proteins and grains, but let's not forget that part of the equation is to also reduce insulin's and blood sugar levels....so it gets very complicated.

    Top oncologist to study effect of diet on cancer drugs

    A groundbreaking clinical trial on whether diet could boost the effectiveness of cancer drugs is set to be launched by one of the world's leading…

    Read it on Flipboard Read it on theguardian.com

    The patients will be treated with a licensed drug, Aliqopa, that has previously been shown to have limited effects in such patients. However, recent animal studies, including a paper this week in Nature from Mukherjee's lab, suggest its effectiveness could be significantly boosted when combined with diet changes aimed at lowering insulin levels.

    "To achieve this, patients will be put on a so-called ketogenic diet (high in fat, low in carbohydrate, normal protein). "If you combine them with a diet which [keeps insulin low], all of a sudden these drugs become effective," said Mukherjee, referring to the Nature study. "The diet really works like a drug."

    In some cases, Vousden added, what might intuitively seem correct – giving patients on chemotherapy a sugary drink, say – might not be the optimal way to boost calorie intake." she said. ( really? no shit Sherlock! can't make this stuff up folks!)

    Maybe one day, hopefully soon, they will study the effect of ingesting processed sugary foods on the growth of cancers. Meanwhile if you don't want to wait for the cows to come home, you can achieve the same effect by taking Metformin or Berberine, the natural over the counter equivalent.

    I personally experienced out of control sugar levels when taking Afinitor and now with Xeloda that Metformin can't control and I am on a strict low-carb no sugar diet....so this is the state of the arts, so to speak....Singing

    I https://www.diabetes.co.uk/news/2017/dec/metformin-shown-to-have-cancer-fighting-powers-98119731.html


  • lucia42
    lucia42 Member Posts: 45
    edited July 2018

    This is from the Guardian yesterday - clinical trials to test whether ketogenic diet make drugs become effective


    "The first cohort, who will begin treatment in October, are lymphoma patients with cancers that have not responded to treatment. They will be followed by endometrial cancer patients, and the team is awaiting approval to treat women with drug-resistant breast cancer."


    Top oncologist to study effect of diet on cancer drugs

    Siddhartha Mukherjee says trial is first in a series on 'rethinking human diets for cancer'

    Hannah Devlin Science correspondent

    Siddhartha Mukherjee, physician, biologist, oncologist and author

    Siddhartha Mukherjee, physician, biologist, oncologist and author best known for his Pulitzer-winning 2010 book The Emperor of All Maladies: A Biography of Cancer. Photograph: Graeme Robertson for the Guardian

    A groundbreaking clinical trial on whether diet could boost the effectiveness of cancer drugs is set to be launched by one of the world's leading oncologists.

    The work, led by Siddhartha Mukherjee at Columbia University Medical Center in New York, will investigate whether a high-fat, low-carbohydrate diet could improve outcomes for patients with lymphoma and endometrial cancer.

    The trial, which is initially recruiting 40 patients, is the first in a series of similar interventions being planned at other centres in the US and Europe by members of a new international working group focused on "rethinking human diets for cancer", said Mukherjee, who is best known for writing the Pulitzer prize-winning book The Emperor of All Maladies: A Biography of Cancer.

    "Physiologically we're discovering that not every calorie is equal," he said. "You could have two different diets, equal in terms of energy, but with two very different effects on the cancer."

    The first cohort, who will begin treatment in October, are lymphoma patients with cancers that have not responded to treatment. They will be followed by endometrial cancer patients, and the team is awaiting approval to treat women with drug-resistant breast cancer.

    The patients will be treated with a licensed drug, Aliqopa, that has previously been shown to have limited effects in such patients. However, recent animal studies, including a paper this week in Nature from Mukherjee's lab, suggest its effectiveness could be significantly boosted when combined with diet changes aimed at lowering insulin levels.

    To achieve this, patients will be put on a so-called ketogenic diet (high in fat, low in carbohydrate, normal protein). "If you combine them with a diet which [keeps insulin low], all of a sudden these drugs become effective," said Mukherjee, referring to the Nature study. "The diet really works like a drug."

    The team arrived at the idea after being involved in trials of drugs that, like Bayer's Aliqopa, were designed to target one of the most common cancer mutations, called PI3K, that is present in up to 40% of breast cancers.

    Despite major pharmaceutical industry investment a decade ago, none of the drugs aimed at PI3K have a major impact on survival rates. "There was an enormous amount of hype around these drugs, huge investments of the order of billions of dollars," said Mukherjee.

    Mukherjee and colleagues noticed that a high proportion of patients on one of the original trials had become diabetic, and after initially dismissing this as a drug side-effect, they began to investigate. They discovered the drug was interfering with one of the body's main metabolic circuits, causing a spike in insulin production, which had the effect of reactivating the mutated genetic pathway that was helping cancer cells proliferate and spread.

    "It may be the central reason we don't get effectiveness," said Mukherjee.

    The trial will be among the first to investigate whether diet can be used to boost the effectiveness of drugs, but others are expected to follow in the next few years.

    "There's been so much over many, many years in terms of diet and what you should and shouldn't eat to help in terms of cancer therapy," said Prof Karen Vousden, Cancer Research UK's chief scientist, based at the Francis Crick Institute in London and a member of the international working group. "There's a lot of black magic and old wives' tales. None of it is really based on any evidence."

    In some cases, Vousden added, what might intuitively seem correct – giving patients on chemotherapy a sugary drink, say – might not be the optimal way to boost calorie intake. "We want to champion the idea that you give dietary advice based on hard evidence," she said.

    Vousden's work has shown that cancer cells are disproportionately dependent on dietary sources of an amino acid called serine. Healthy cells can produce their own serine, but cancer cells are less capable of doing this, and animal studies have shown that cutting dietary intake of the substance makes cancer more vulnerable to drugs.

    Serine is present in most dietary protein, so if clinical evidence supported such an intervention in the future, this might mean patients being placed on an extremely low-protein diet, supplemented with a serine-free protein shake.

    Both Vousden and Mukherjee say they would discourage patients from putting themselves on diets after reading about the latest findings. There is no evidence that the ketogenic diet, for instance, would be helpful on its own – in fact, for leukaemia it appeared to accelerate the disease's progress.

    "We are not suggesting that people go out there and self-medicate with these diets," said Vousden. "We're looking at it more from the way we'd look at any other drug."

    Prof Greg Hannon, director of the Cancer Research UK Cambridge Institute, recently discovered that a compound found in asparagus called asparagine appears to drive the spread of cancer. The study, in mice, showed that animals with breast cancer had a dramatically reduced rate of secondary tumours when asparagine was either blocked using a drug or cut from the diet.

    "The holy grail is finding something that cancer cells are uniquely dependent on," said Hannon. "By depriving them of that resource it makes them more vulnerable to things that we already use to treat patients."

    There is no suggestion that cancers have been caused by a diet in the first place. "We're looking to attack peculiarities in cancer cells, but an imbalanced diet would not have caused those peculiarities to be there in the first place," said Hannon.

  • luce
    luce Member Posts: 361
    edited July 2018

    thanks for posting that article! and, yes, an alkaline keto diet and keeping insulin low and blood sugar low and stable is kinda what i am shooting for these days. extreme measures for an extreme disease. and, yes, i suspect that a ketogenic diet is best used with drugs, since by itself, it may wake up quiescent cells, but then there's nothing to kill them. and, yes, i think diet or tumor environment (which, again, may be influenced by diet) may be one of the factors why verzenio, keytruda, etc., works for some and not for others. if i am to take keytruda, i want to skew my tumor environment towards a favorable response. since the science of that is in its infancy, and i don't have all the time in the world, i read studies, then draw my own conclusions. i am also hoping to add some alkalinizing minerals, though, to support this effort. (as i posted above, dr. gillies recommends both diet and supplements to support both verzenio and/or keytruda.). as for the IV or intra-tumoral baking soda, of course i knew it can't be done DYI (oral can, though), and it's a moot point for me also since i, too, have widespread bone mets, in addition to visceral ones. (not that i dug deeply, but i could only find one study on baking soda and cancer, and that was oral also, and hadn't been updated in a year. i'm interested in anything you referred to.)

  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    Here are the links regarding the most recent studies conducted by various organizations. One of them, I believe, was conducted by dr Gillies, your doctor, with astonishing results when antifungals and/or bicarbonate of soda treatments were added to chemotherapy drugs.

    https://www.medicalnewstoday.com/articles/322009.php

    Antifungal drug kills dormant colorectal cancer cells

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2834485/

    Bicarbonate Increases Tumor pH and Inhibits Spontaneous Metastases

    https://www.sciencedaily.com/releases/2018/06/180601134720.htm

    How might baking soda boost cancer therapy? Researchers describe how acidity turns oxygen-starved cancer cells dormant and drug-resistant -- and a potentially easy way reverse the effect.

    "In tumors grafted into mice, we see mTOR activity in spotty places where there's oxygen," says Dang who is also a professor in the Molecular and Cellular Oncogenesis Program at The Wistar Institute. "But if you add baking soda to the drinking water given to those mice, the entire tumor lights up with mTOR activity. The prediction would be that by reawakening these cells, you could make the tumor far more sensitive to therapy."

    Baking soda had previously been reported to enhance cancer immunotherapy by one of the co-authors of the new study, Robert Gillies of the H. Lee Moffitt Cancer Center, though the mechanism underlying the effect was unclear.

    The reason why bicarbonate alkalizing environment enhances cancer immunotherapy so effectively is due to its powerful antifungal properties. ( let's see how long it will take before they arrive at this conclusion) Simoncini says that a tumor is the body response to encapsulating an out of control fungi infestation. He has demonstrated by dissecting tumors that fungi colonies reside at its core. 5% Bicarbonate works best when treating blood cancers as it can be injected in the bloodstream with fast results.

    For what it's worth...I was taking a teaspoon of bicarbonate of soda@day in the proper amount of a delicious water and lemon combo, but I had to stop as it interfered with food absorption and potentially medication malabsorption as well. Taking other alkalizing minerals might mitigate that problem. Please let me know what your MO prescribes. One way you can bring more oxygen to the cellls is by supplementing with Chlorophyll drops.

    I'm currently on Xeloda-twice @day, my MO at MSKCC has instructed me to not take too many antioxidants which I find maddening. So to give him and the drug the benefit of the doubt I take HCL and all sorts of digestive enzymes and probiotics with my first meal (since radiation and ibrance have destroyed my ability to produce hydrochloric acid and bile) before I eat a low-carb meal loaded with natural antifungals like garlic and clove, take Metformin (another antifungal and blood sugar lowering agent) and take the X alone without antioxidants interfering with its potential beneficial action.

    Throughout the day I drink detoxing and alkalizing concoctions like strong ginger tea mixed with lemon juice and crushed flax seeds and the like.

    I give X six hours to work and then with my lunch I take more pro-biotics, all my various antioxidants, vitamins, minerals, and more antifungals.

    6 hours later with dinner I take the remaining X and a combo of magnesium, calcium, k2 and D3 that put me into a deep sleep.

    But before I fall asleep I round up my biodome clean-up crew by ingesting 2 anti-SIBO pills and let them go to work eating up the bad actors killed during the day while I sleep.

    I'm not sure if all of these efforts will affect the results of blood tests and future scans, but it's worth trying as I am pre-diabetic and have to be on a low-carb diet anyway.




  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    Hello all,

    I am on Verzenio and Faslodex. Into the second month on V. Markers went down from 873 to 814 the first month on V. I was on Fas only prior to that and markers just kept rising. In fact the last month on Fas only my markers had the biggest jump up.

    My question - to all and on Wednesday to my Onc is - why still take Fas if it didn't work? I know the combo is supposed to be good but I assume that's if Fas never failed or was never used?

    So, if Fas was not working for me, is there any point in using it along with V? Personally I just don't see the advantage to pumping a useless drug into my body.

    I am also, assuming I am still getting a good response to V, going to get a lower dose of V. I am presently on 150 mg twice a day and the side effects are too hard on me. The gastro issues are the main problem as I feel sick most of the time. I am simply tired of feeling like crap. This is not the quality of life that I need to keep me on any drug.

    On the first go-round with bc I was taking Arimidex and the side effects were so bad that I simply quit after a year and a half. Turns out lots of people progressed on it anyway so no guarantee it was going to work. Six years later I am back with mets to bone. My problem - if it is a problem - is that I am not willing to suffer for years and years for a possibility. That's just me. I am going to die anyway whether it is from this or something else. Life has to be worth living - now.

    Any thoughts on the Fas question would be appreciated.

    Chats


  • luce
    luce Member Posts: 361
    edited July 2018

    chats: i'd go off the faslodex but stay on 150 mg verzenio for now. verzenio is approved as monotherapy. your side effects may be compounded by faslodex. if after 2-4 weeks, your side effects are still intolerable, i'd lower the dose to 100.

  • luce
    luce Member Posts: 361
    edited July 2018

    mioaw: the third study (How might baking soda boost cancer therapy?), and the one you quote from, is the very study that sparked this discussion and that i had posted much further up. i communicated with one of its authors, and with the author of a previous study (i also supplied the link; thenone about baking soda enhancing immunotherapy) that had inspired this one. i got recommendations (i posted dr. gillies'; will post the other one later. it basically was the standard "don't do it--it could be dangerous"). the authors do not think that baking soda cures cancer, to be clear.

    yes, i think an alkalinizing mineral mix using mostly citrates would not interfere with digestion (since not alkaline in the stomach) but may still work like the baking soda because its metabolites would be alkaline. i am trying to figure out a protocol.

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    luce,

    My intention is to tell the Onc that I think Fas is pointless at this time. Your suggestion is a good alternative. If I can stand the V at 150 with a better quality of life minus the Fas and get a good response I would be willing to do that. It would just be another month of V after this to see if it works. Then, as you said, lowering to 100 would be my next move.

    I just don't understand why the Onc does not see the futility in dosing me with Fas when it proved to be a failure. The only thing I can assume is that he is stuck into the standard of care mode and if the drug company says the combo is good then so be it regardless.


    Chats

  • luce
    luce Member Posts: 361
    edited July 2018

    i am on verzenio for the very reason that i don't tolerate anti-estrogens and it has been shown effective and therefore been is approved as monotherapy. the faslodex-verzenio combo shows a (much) longer duration of response, though. i suspect only if faslodex actually works in an individual, though. so i would not worry about that if i were you.

  • cure-ious
    cure-ious Member Posts: 2,932
    edited July 2018

    Hi Chats,

    It is possible that the Verzenio is blocking a pathway that your cancer cells have upregulated in order to escape the effects of the anti-estrogens, and if so, your cancer cells may now be again dependen on estrogen for growth. This is the basis for several treatments, and why MOs may go back and try anti-estrogens even though they failed in earlier lines of treatment. When playing with a combo, either drug can resensitize the cancer to estrogens. Just a thought, we will be interested in his response.

  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    chats I know how you feel, I'm not on V, but ibrance and radiation to my spine completely ruined my digestive system, I guess nausea, suppressing the immune system, acidifying the body comes with the territory of the current state of the arts treatments.

    There's a product however, made by Thorne called Bio-gest that has a combination of HCL, bile salts and the enzymes you need to digest and assimilate foods. It's been a life saver for me. No more tummy aches, gas, and diarrhea. I also found that eating imported cheese made with raw milk eliminates diarrhea permanently and faster than Imodium. I use the cheeses over a low-carb TJ rice tortilla and I add to it a small avocado for good measure

  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    Luce, you’re right...they’re the exact same study....keep us posted on what type of protocol you'll undertake after you digest all the various studies...we learn so much from each other's experiences.


  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    Cur-ious, that's an interesting observation. I will definitely post my Onc's response to the Fas question.

    Maiomix, Damn. I had a bottle of a product that was for digestion. Just checked my cabinet of vits and stuff and it's not there. Guess I either finished it or threw it away because it was old. I will definitely get the Bio-gest.

    An additional note: I got the first part of my bloodwork that was taken on Thursday. I have been taking Turkey Tail mushroom caps by Host Defense to aid my immune system. Interestingly, my white blood cell count went up from the last test, from 1.3 to 1.9. In clinical trial this product was used and this was the result- increased lymphocytes. Next blood test will determine if this continues. If so, it will make it possible for me to remain on V without my wbc tanking badly. I had to quit Ibrance because my wbc and grans were so low it was becoming dangerous.

    I am also getting Reishi tea which has not arrived yet. That also has positive immune effects.

    luce, I noticed you mentioned Artemesinin. I was taking that for a period of time in the beginning when I was on Letrozole. I didn't see a tumor marker response so I quit. However, it might be a good thing to add. As far as I know, the mushrooms and Art do not interfere with the drugs. They act in an entirely different manner in the body.

    I will have the tumor marker results on Monday or Tuesday. I hope the downward trend continues.

    Chats

  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    Thank you Chats for the tip about Turkey Tail mushroom caps by Host Defense, I will definitely try it as I need to get my WBC numbers up....

    I have a bottle of Artemisinin that I have not taken as I got confused on its proper use, but now I just found this very clear and detailed protocol that might make a difference in getting good results

    When using Artemisinin, it is suggested to take the supplement with food. Generally, 400 to 800 mg per day can be used for at least 6 to 12 months. After that, dosages can be reduced slowly.

    It is also recommended to take Coenzyme Q10 (coQ10), 100 mg once a day with a meal. Cod liver oil, cottage cheese, or fish oil may be administered at the same time to enhance absorption of both of these supplements. Always take this supplement 2-3 hours aside from other antioxidants such as Vitamin C.

    It is advised not be take glutathione supplement as well, as this made the Artemisinin less effective in research studies for cancer treatment. Vitamin E supplements should also be avoided.

    The Gordon Research Institute found that a 200 mg dose of this supplement is useful as a general and breast cancer treatment. Dr. Narendra P. Singh, a biochemist at the University of Washington published a paper description the effects of this supplement called Artemisinin and Cancer Treatment.

    Patients with breast cancer can benefit very much from artemisinin-based treatments and therapies because of its' unique relationship with iron; iron itself has a tendency to build up in breast tissue, in both healthy and cancer cells. When artemisinin is used, it kills the cancer cells while leaving the healthy cells alone. In one study, "it was found that artemisinin (the derivative), coupled with iron, can kill 98% of breast cancer cells in 16 hours. Alone, the herb caused a 28% reduction in breast cancer cells, but partnered with iron, the duo almost completely eliminated cancer. What may be even more interesting, normal cells were not negatively affected in this experiment by the treatment."3 This differs from more traditional medicines such as radiation which just target entire groups of cells; because breast tissue is rich in cancer cells, the ability to distinguish healthy versus cancer cells is can make a major difference in how a patient feels during and after treatment.

    Most recent tests indicate that I have very high levels of iron, so me thinks it's time to add this supplement to the mix,

    On another note...Artemisinin seems to act in two ways against yeasts(2). As above, it attacks the mitochondrial membrane by producing free-radicals. It also interferes with ATP-dependent calcium transporters in the mitochondria. Artemisinin is very effective at killing yeasts, typically it can be used to treat excesses of Candida albicans in humans.

    Lo and behold, look what we have here, another weird coincidence, artemisinin happens to also be an antifungal Smile


  • JFL
    JFL Member Posts: 1,373
    edited July 2018

    Chats, I agree with Curious. You may see activity in a combination of 2 drugs that you did not see with monotherapy. The fact that your tumor markers have done an about face and are now decreasing is a good sign. Cancer cells have different paths to take to get to their destination. If the cells have two paths and both are blocked, then they will not get to where they need to go. However, if only one is blocked, they will be fine traveling on the backup route. I am debating whether to take Verzenio as monotherapy or in combination. I would prefer to take it in combination but that may not be a viable option for me. Perhaps you couldwait and see how your blood work continues to progress and have a scan before removing a drug that may be working effectively in this combination?

  • luce
    luce Member Posts: 361
    edited July 2018

    i, too, used to take arte. no idea if it worked (i had no monitoring at the time) but it was expensive and so i eventually stopped. it probably only makes sense within certain protocols, like with hyperbaric oxygen and keto. the question hadn't really been aimed at this group.

    some people report rapid improvements in blood counts with bone broth.

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    Another note: I have declining red blood cell count or anemia - now at a level not too much lower than the lowest count. My red blood cell width is also increasing - not good either. I have read that both Fas and V can cause this. I have read on other posts about some who had to get blood transfusions due to really low rbc. I don't want to go there. I am RH negative so not a lot of people with that blood type.

    luce you mentioned bone broth. Would this be good for both rbc and wbc? I can pick some up at Whole Foods.

    Maiomix, I had researched Art as much as I could. There seemed to be evidence that a pulsed ingestion was preferable because absorption diminished after a few days. So it was four days on three days off in order to reactivate the absorption. I would have to go back and read again to get the correct language but this is a clumsy summary. I was pulsing the Art. I know that there were some studies of people who took it every day for months. I wish we could get some real clinical trials on stuff like this to nail down what the true dosage should be.

    And yes, it is an anti parasite and anti fungal. It is interesting to note that I have had bouts of what I assumed was like diaper rash from wearing jeans and not being dry enough in the crotch area. Candidas? I used anti fungal creams when this would happen. Men get jock itch. Same thing?

    Chats

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    Maiomix, another thing I would like to add is that I assume with anemia I have low iron. Does the cancer sequester so much of it that it is adding to my anemia? I try to eat things that are rich in iron to combat this but that doesn't seem to be helping. However, I intend to add the Art back into my protocol. What the hell.

    Chats

  • luce
    luce Member Posts: 361
    edited July 2018

    bone broth might help.


    The richest source of arte info was actually a yahoo group for owners of dogs with cancer on arte, when I was taking it. I'm sure it still exists. It has one very smart guy in it who stays on top of the research. And Dr. Singh advises.

    And I would not assume that those substances necessarily work along entirelydifferent pathways as Verzenio, and might all be compatible. Could be, but most of the meds we take work in ways not entirely known.(See a paper I posted a few weeks ago, finding that Verzenio does not just inhibit Cdk’s.) Nothing’s straightforward in cancer. That’s what makes all this so maddeningly complex.

  • luce
    luce Member Posts: 361
    edited July 2018

    chats: Its possible the cancer may be using your iron. The cool thing about arte is that you can work out a protocol that lets you supplement with iron, presumable safely, since the iron that gets preferentially taken up by cancer cells then attracts artemisinin when you pulse that. Something like that. It's been years, and I gave up on it because I had more questions than answers. And I didn't like having to take it with food, since I practice time-restricted eating.


    I wish some truly integrative doctor could tie all the info I am studying together for me.

  • Frisky
    Frisky Member Posts: 1,686
    edited July 2018

    Adding to the mysteries of cancer behavior, treatments and protocols....two years after being diagnosed my BW started showing signs of anemia but I didn't supplement with iron because my MO didn't recommend it. I also read that the cancer cells use iron to grow. Fast forward to two weeks ago....my BW suddenly showed very high amounts of iron....where it came from I'm not sure, but since it's there already I figured it might the right time to take the art and see what happens. This is my week off from xeloda and the protocols are similar, NO antioxidants!

    I too read that it's necessary to pulse this medication and will do that....and see what happens...I have BW coming up....

    BTW...the MSKCC very conservative information page on various herbs and supplements lists Arte as effective against cancer. Apparently there are clinical trials taking place, but I'm sure where are being conducted. We have to wait till the pharmaceutical can make a proprietary uselessversion they can patent.Happy

  • sandilee
    sandilee Member Posts: 436
    edited July 2018

    Just had my blood work for my first month of Verzenio and Faslodex combo. My CEA dropped from 370 to 279. I'll take that, as long as the trend continues. Relieved. I thought it was working because my liver is very quiet. Crossing my fingers that I get a decent run on this.

    Side effects for me are low red and white counts. Red counts may be low anyway, but the white seems to have taken a dive this month. Intestinal issues are minor, but then I'm on a 100mg dose from the beginning.

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    Hi all,

    Got my tumor markers today. Dropped again from 813 to 731. Alk Phos dropped to 57. Liver numbers normal. Looking good. Onc is lowering my dose of Verzenio to 100 mg. He wanted me to stay on Faslodex so that we could see if the lower dose of V is OK. He said - logically - that if we do two things at once, that is, drop the Fas and lower the V we wouldn't know which was doing what.

    Sandilee, I am hoping that my side effects will be more manageable at the lower dose as well. The 150 was just too much for me. I am 5' 8" and weight about 130-133. My weight was dropping due to not being able to eat. I really don't want to get any thinner. I look fine at the range I cited. The stomach problems and lack of taste buds were wearing me out.

    I am a terrible patient. I have very low tolerance for being sick and going to doctors. How I wish I could turn back the clock and be my happy go lucky healthy self again...

    Chats

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited July 2018

    Luce, re Artemesinin. I read one study done with Fulvestrant and Art and the opinion was that the Art worked as a complimentary agent with Ful. So yes, these substances may very well travel along the same path in a harmonious way.

    Chats