Ringworm drug for dogs (Fenbendazole) might also cure cancer
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well said Santa...our doctor's ignorance about complementary therapies is immense. Also, many studies use huge amounts in their testing that would never be the situation in real life...they do it to prove the point they were being paid to find a priori
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Nicole,
Wow, on that lab scale, I should have been comatose in August after my first Ibrance cycle -- if their lab range is 1.9, and I was at 1.39!!! However, I do recall seeing on the Ibrance thread that docs look for it to be at a 1 at least? I think I'm remembering that correctly?
In any event, sorry, folks -- didn't mean to highjack this thread.
And santabarbarian, I totally agree with you about people getting their info from a reliable source. When I talked yesterday to my oncologist at Hopkins about complementary therapies, she rolled her eyes a bit and started talking about how they practice evidence-based medicine there, and how there are not studies on complementary therapies (which is not exactly true -- it's just that they don't want to acknowledge them). At my last visit, I told her that I had been put on metformin by my internist both because I'm prediabetic and because I've read that it can help with cancer. Again, I got the eye roll and was told that "this is now being studied" but that no one really knows.
I do think, though, that everyone has to decide for themselves what they want to put into their bodies, and so we have to be supportive of folks who are using complementary therapies along with conventional medicine, as well as those who are only comfortable with conventional medicine.
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Santa I didn't see your post over there in the Do not take...but I have not added anything onto the list that came from someone saying "My MO said not to take this..." I did add not to take grapefruit with Ibrance but that is a fact of the medication not just something someones MO told them.
I agree though, I wouldn't add anything just because someones MO told them that.
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oops I think I meant the COC McClelland thread, Nicole
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BenJen, I agree wholeheartedly including your last paragraph...may I ask you if you're still on the COC protocol and what that entails exactly?
I'm taking the four medications every day, except for the FZ which I take only for four days....my primary physician will be supervising my health every month...I'm not sure if I should take the 90mg statin since I have lesions in my liver
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Yes, frisky when they tested high dose C thy used an oral dose. When the whole point is to make it higher than is possible with an oral dose.
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Frisky,
I am only on Ibrance/faslodex at the present time, plus a very few supplements, as well as metformin only 1x per day (500 mg). One of the other supplements that I'm taking is berberine, which I take also once a day. It has a somewhat similar action to metformin. I haven't gone onto the COC protocol. Anotherone and Simone80 are on COC -- don't know who else is.
I will be scanned after another month on Ibrance and at that point, I will figure out what to do about COC. I am going to meet with a naturopath doc at George Washington Center for Complementary Therapy (I live near DC) near the end of September to discuss her views on supplementation, etc. She works with the GW Breast Cancer Center also, and they have a good reputation (although that's not where I am getting my conventional treatment).
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Does any one remember who said that Clarinex (not claritan) is good to take every day ?? I tried to do a search for it but didn't find what I originally saw..... I believe it was here in this thread.
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Nicole,
here you go:
claireinaz wrote:
I've been taking claritin daily since I read something similar about 4 years ago. I thought I'd see if anything was updated, and here is an abstract to an article that seems to support the benefit.
https://cancerres.aacrjournals.org/content/78/13_Supplement/5695
The article that she posted talks about clarinex, I believe
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Hi everyone,
Frisky, one of the drugs in the CO C protocol made me very sick when I upped the dose per their instructions. I stopped taking it all together because frankly I can not be sick like that when I am taking ibrance. I get too dehydrated, can't eat ect. I'll try it again when I get back home.
I just got back from my new Integrative docter. I think I finally found one that knows what he is doing. He is going to look at my Cancer at a micro level and then put together a plan which will cover supplements, C iv, etc. He doesn't just push a standard and thinks outside the box. I showed him the COC protocol and he wasn't aware of COC but was aware of using all those drugs to fight cancer. He would prescribe those if I wanted. Get this, he mentioned Joe's protocol and if I knew about it. He asked if I thought about following that instead of taking the metabenzole. He said there has been a lot of buzz about it and John Hopkins is looking into the protocol.
Goldie,
not sure if this will help but I asked him about milk thistle if was bad for er+ bc. He said to his knowledge it was not.
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Simone,
Sounds like you found a good integrative doctor! I had to laugh, though, because when I was at Hopkins yesterday and asked about various complementary treatments, they looked at me like I had two heads. For sure, Hopkins is doing two trials, I think, on the mebendazole. I haven't seen anything about fen ben, though. I will ask next month when I am there next.
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Thanks Bev I am going to the allergist tomorrow and gonna get the script for Clarinex D (I had it but it expired) plus it will save money compared to the over the counter claritan D I get.
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Sorry, I lost my way with the last conversations of this thread. I don't remember if this information was shared before, but sulforaphane pills (broccoli concentrate) apparently help block breast cancer stem cells. I will start taking them tomorrow. Another study suggests that hormonal therapy benefits from the addition of MSM (which also helps with joint pain and is cheap) MSM increases anti hormonal therapy effectivity and it is anticancer by itself. Research also suggest that it inhibits her2 overexpression
https://www.ncbi.nlm.nih.gov/pubmed/2664017/
https://www.ncbi.nlm.nih.gov/pubmed/22485142/
https://bmccancer.biomedcentral.com/articles/10.11...
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Thanks for all that Sonia!
I got a kit to sprout broccoli sprouts (before I was re-diagnosed) I am about to start it I need to check now though if it can be bad for liver/ Ibrance/ etc....
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Husband, can't you ask/tell the MO that you would like more frequent labs? When I first started Xeloda, mine wanted me to do every month, to which I responded, I will do every 6 weeks. I did not want to live my life a month at a time. Also, when I hit my 5 year mark from original diagnosis, he was only going to check me annually, I said I want to stay on 6 months, and we did.
Well, I have decided to stop both the Gama E and Milk Thistle. I have 6+ bottles of Milk thistle and I just got a new bottle of the Gama E.
I wonder if eating fresh broccoli is as good? I love broccoli!
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Goldie: As far as I could find out, the cooking process destroys the anti-cancer properties of broccoli. It only works if you taking it raw or steamed (less than 2 minutes) if your stomach tolerates it...
I have read that liver enzymes can increase if the liver is blocked with toxins, calcium and other wastes.I would't be surprised if a massive death of cancer cells causes high enzymes.
I was thinking that dandelion tea, and also raw leaf salad, are excellent for supporting liver function and purifying liver toxins. Maybe it helps with elevated liver enzymes. Also coffee enemas (they are not pleasant but they are very effective)
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Bev Jen, I believe with Ibrance that dose reductions can kick in if your ANC is not "recovered" above 1.000 after the recovery week. Usually, one will need to take a break from therapy when it is down to 0.500 or lower. Your levels are holding up well at the high dose!
Santabarbarian, I take a more open-minded, positive and supportive view about stage 4 women making recommendations based on "what my MO said" to other stage 4 women. We all need to decide for ourselves how we are going to treat our MBC and decide what to believe, what to disregard and what to look into further. Kind of like everything on the internet - we all need to determine which sources are reliable for ourselves. I do know some women on here who have great doctors who are very supportive of integrative and complementary therapies from great cancer centers and I am interested in what their MOs have to say. Some women have access to top MOs at integrative and complementary cancer centers to which others in different parts of the country do not have access. Some of us in the stage 4 forum have been sharing stories for years about our experiences with our MOs and have grown to learn who has the "rockstar" MOs, although sadly, that is a small number. Also, I would not automatically dismiss as wrong any MO who may tell a patient that a certain antioxidant is bad for that patient's cancer. The whole issue about whether antioxidants/immune system boosters help ward off cancer or help cancer cells to regenerate and grow is a complex and nuanced one with thousands of inputs. Some antioxidants in certain forms seem to help our bodies and others seem to help the nasty cancer cells. Metastatic cancer cells have developed a keen ability to engage in cross-talk with other cells throughout our bodies. The cancer cells are able to trick the immune system and harness its power into protecting the cancer cells, meanwhile manipulating the immune system into attacking the protective mechanisms our bodies have to identify and remove cancerous cells from our bodies. There are MOs have have information about this that I am interested in hearing.
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Wow JFL..that part about antioxidants just ...WOW ...*claps hands* so well explained and with relation to that...that is what sucks...we just do not know if we are the one that the Vitamin E or the Tumeric (for example) is going to help or to hurt. I have said it before especially in the "can we talk sugar/carbs thread" what may be considered to be soooo healthy and may work great for person 1...may actually hurt person 2 and do nothing for person 3.
It's actually sad that it is that way. I have always said that I think ANYTHING in excess is bad...just my opinion...I mean vegan, meat eaters...everything included. I met a girl a few years back that was a vegetarian and then vegan for 14 years. Even though she ate tons of greens and healthy fruits etc...she began having deficiencies. She took vitamins and supplements that are all good for you. Finally she was going to the doctor with extreme fatigue and other issues. Her dad convinced her to have some grass fed beef (Elk) she finally started eating it like 2 times a week and all her health issues cleared up. Go figure. I am NOT saying meat is healthy...I am just saying that for some people (like me) what's considered to be the HEALTHIEST option doesn't always work the best for everyones body. I hope I explained that in a way that is understandable.
Edited to add in: In case any one thinks I am saying to eat unhealthy or anything like that..I am not. I am just saying that everyones body is different and what helps one person doesn't help or even hurts another ones. Even with something deemed "healthy- good for you"
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The whole matter of antioxidants is simply complicated! I had read that while I was doing rads I could NOT take antioxidants because they interfere with treatment ... Well, yesterday I saw my RO and she prescribed me an antioxidant supplement ... (?)
Nicole, broccoli sprouts are good for you! Good luck with your sprout kit 🌱
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Thanks Sonia !
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Other than specific dx/ tx contraindicating *specific* supplements, I do not think there is much actual debate among knowledgeable people re supplements in general. The right antioxidants **do not** help cancer more than they help the human who has cancer. My hometown MO told me the same "fears" that antioxidants can possibly help the cancer; that chemo acts to raise inflammation and antioxidants reduce inflammation, etc. They were fears and theories-- due to the lack of double blind testing of anti oxidants. Dr Block, who has used antioxidants for 30 years of oncology in all his patients, many of whom are late stage, does not have this abstract fear as he has concrete results: his patients do significantly better and live a lot longer than standard of care.
The only cancer-starving meds or supplements that *might* be dicey are those with other effects in the body that mess with our hormones or the way a specific chemo drug works. That's logical to avoid. (I avoid DHEA -- a McClelland recommendation-- as its a precursor to Andogens in the body, and I had an AR+ cancer; I don't eat asparagus due to a compound in it that aggravates TNBC.)
Yes our bodies/cancers are different. Some of us have allergies, deficiencies, underlying other conditions, etc. But IN GENERAL the debate on supplements as a general practice is *over* among knowledgeable people. Dr Block explained to me that a lot of the supplementation simply addresses our nutrient-deficient modern food supply, grown in depleted soils, etc. An organic tomato you grow in a back yard garden, fueled by compost and sun, and worms and good soil, is much healthier than a factory-farm pesticide tomato. Nobdy would oppose a super healthy diet but we can't all get that without supplementation nowadays.
As far as I know he gives high dose curcumin IVs and high dose C IVs to all the cancer patients he sees, as well as a bunch of other supplements. Low fat, low animal-product, low egg, no junk, no processed foods, high rainbow-veggie diet. Many of his supplement recs are food based: reishi mushrooms, green juice powder (suer greens organic), matcha, organic whey protein isolate.
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the sad truth is that traditional cancer therapies are unreliable, if we honestly look at the relapse statistics of 30% of stage 1 and 2 BC patients.
So, all these debates about the role of supplements, although stimulating, miss the point that there's still no cure,—apart the success stories from the COC and Joe's people. Everything we do to delay the inevitable is, of course, admirable but sadly useless...
We are all unwilling participants in a deadly musical chair game....all busily hoping to figure out the angles before we are called in for that inevitable talk with our Mo's,
It's obvious that if we had an ounce of trust in our doctors and in their treatments, there would no need for us to research and post here. We would be all very busy living our lives. So, in my book whatever research and studies come out, have to be faulty, as the premise is obviously the wrong one to start with: Supplements might sabotage drugs that ultimately won't save us to start with, and that are known to destroy whatever health we have in the process. Humm what a deal
Cancer is now the number one killer...
Each one of us must ultimately decide for themselves or with their doctor's input what's best for them. It's a little like a Russian Roulette game. What we post here, will be very useful to posterity to figure out what the heck was going on during this period. And maybe our posts, whatever little victories we enjoy will help the thousands of women that will be diagnosed right after we're gone.
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Well said and right on Frisky!
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thanks Goldie!
As far as the E is concerned...don’t take it...see if it affects the TM, but remember that in mice studies they found E to be essential for the FZ working!
I have to decide on E myself, but then I ask myself what are the odds that Doxil is working and for how long? VS a potential cure with the FZ? The answer is obvious....
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L-arginine is another controversial supplement. Some naturopaths say it is anti-angiogenic, while other studies claim that it stimulates angiogenesis ... Could someone ask their integrative doctor? Because if it is an angiogenesis inhibitor, it is a golden key to preventing metastasis ...
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Frisky, well said.
Yndorian, I have also heard mixed thoughts about l-arginine - for both cancer and other ailments.
Santabarbarian, who are these "knowledgeable people" that you refer to who know with certainty more than the rest of us and more than all the medical professionals? What qualifications do they have and how do they get their information? Can I get them on speed dial? I would love black and white rules of this is good and that is bad. Alas, it is not the reality.
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Frisky, I quit the Milk Thistle and the E. I'm just scared to death.
Sonia, how are you doing with the rads? Is it kicking your behind and are you resting?
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Goldie: ya tenía 10/33 rads. Mi piel está bien. Estoy cansado ( ya me lo había advertido) pero no puedo dormir una noche entera debido lo siento, ya no pueden tener vit.e y cardo mariano ... Tal vez sea sólo temporal hasta que se caigan los marcadores. ¿Sientes tu hígado inflamado? ¿Has probado una limpieza de hígado? Manzanas verdes son excelentes para el hígado
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JFL,
I was referring specifically to Dr Keith Block who is a MO of 30+ years, AND an expert in nutrition & supplementation and integrative practices having used them in a busy clinical practice for decades. And my naturopathic physician, who has had a specialty practice in supporting cancer patients going through chemo since her brother had had chemo a long while ago it was something she chose to specialize in.
I was lucky to find two people with extensive experience, from both sides, combining complimentary therapies with traditional medical approaches. And they have been in agreement with one another-- which is reassuring too. I know another MO in my town, who was not my MO, who is semi-retired, but who *also* endorsed the practices (like high dose C IV & supplements) that I was advised to do. This other MO also had quite a few patients see the same Naturopathic doc I saw. So that was three agreeing: two top-flight MOs and one NP. Also Ralph Moss who does the Moss Reports (he studies and distills all the research-validated stuff) was on board with all the therapies/supplements I did.
So I found that there IS a general agreement among informed people who are willing to look at CLINICAL evidence from a practice using these things. Most MOs will not do this, preferring the double blind trial as a gold standard. The key is that most chemos do not defeat CSCs (Cancer stem cells), which are the seeds of metastases. Whereas curcumin and Metformin and C (among other things) do hit CSCs.
Because I had 3 experienced and respected "medical" people telling me I was on the right track with these practices, I had the courage to press my less-naturally-informed MO, who was my primary MO, and stick up for the things I had decided to do. (His objection to high dose C was "you can get an infection from a needle stick." My reply was "OK, I'm willing to take that risk.") To his enormous credit, he respected my right to make informed decisions in what he admitted were grey areas, and he was very supportive of me in the long run. And now he's somewhat of a convert and wants me to STAY on my supplement program.
I think most of the "naysayers" have ZERO experience with these methods and practices and they default to "if it is not proved by a double blind trial, it is not something I can recommend." But there will never be a double blind study of high dose C until the government does one-- as you can't make money on C.
I began with 3C TNBC (todays rubric). 3.8 cm tumor with other knobs on it, and at least one 3 cm node. I decided to throw everything at it and I am extremely glad I did.
PS Dr Block will do a consult and he accepts insurance. The Block Center in Skokie, Ill. People fly in to be treated by him and fly home. I chose to stay in my hometown but I got a consult and followed his program. He does a few things I could not duplicate: high dose IV curcumin that he has specially made up, and 'pulsed' chemo drips over a longer period of time. But I followed the rest of it.
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well said Santa! We need both modalities to survive....
JFL, I know you take so many supplements yourself ....because you've been following in part your extensive complementary protocol, such as the use of ashwagandha. Thank you!
Don't tell me that your Mo recommended it? You probably read about its benefits somewhere else and deemed it worthwhile because you felt better....ultimately that's how we know complementary therapies work, they allow us to keep on functioning in the midst of the conventional inevitable Armageddon on our bodies...
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