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  • Frisky
    Frisky Member Posts: 1,686

    JFL, I have experimented with various types of turkey tails..from pills to extracts..to the wild ones I found in the woods.I was not following a precise protocol and so far I have not benefited because there was progression in the liver, but maybe under a doctor's guidance it could produce good results..

    I have alternated the turkey tail with Chaga infusions and Myitake extract( very expensive)...

    Maybe I would have progressed more without them...it's hard to say...how much are you taking?

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Snooky, I'm sorry you are still dealing with headaches... Maybe your pain is due to tension in the neck (too much pc...) you can try an analgesic combined with a muscle relaxant. The headaches are so debilitating, I hope you get better soon

  • JFL
    JFL Member Posts: 1,373

    Frisky, I take 6g of turkey tail per day, 3g in morning and 3g in evening. That seemed to be the dose that produced the most natural killer cell activity (more than the lower dose and the higher dose) in one trial. 3mg, 6mg and 9mg were tested for immune response in breast cancer patients. I believe up to 12 was tested for safety. I started with 1g per day and worked my way up. It is expensive due to the high dose. I started taking it because over the years, my body has taken a beating from treatment. I am trying to keep myself strong enough to withstand treatment. As I have mentioned, I started turkey tail, maitake and ashwagandha about 5 or so months ago. My hemoglobin has improved dramatically and was actually normal a week ago for the first time in over a year, which I believe is primarily due to the ashwagandha but turkey tail and maitake are also known to assist in hemoglobin recovery and regeneration. My lymphocytes, which were also really low for a long time, have also improved significantly and I am not sure whether that is a result of turkey tail, maitake, ashawgandha or some combination of the three. However, my lymphocytes did have the biggest improvement after I boosted the turkey tail from 1 mg to 3mg and then 6mg. Clearly there is some immune response going on. In that respect, these supplements have exceeded my expectations.

  • Frisky
    Frisky Member Posts: 1,686

    JFL I'm so happy to hear how these mushrooms are helping your blood rebound in a measurable way. It's very encouraging.
    The ashawaganda is definitely affecting my adrenals and I greatly benefit from that. All the mushrooms I'm taking, are lowering my blood sugar levels and give my whitish hair an intense dark gray...which is all good, but no measurable changes in my hemoglobin. I will have to increase the dose and be more consistent, is what I'm learning from your positive experience.

    You know...as far as the COC protocol is concerned, my new MO at MSK was completely unfazed by it...her only suggestion was to withhold the doxycycline because it interferes with the Doxil...when asked about the metabolic approach she said MSK is doing research.

    JFL, may you continue to benefit greatly from these mushrooms and provide knowledge for those of us that are interested and right beside you...


  • nicolerod
    nicolerod Member Posts: 2,877

    Frisky...yes I just read yesterday that even Jane changed her statement that originally in the book said it was good to do Doxy with chemo now she said it is not. Since Chemo is going to be my next med I am going to keep that in mind.

  • simone60
    simone60 Member Posts: 952

    RE: Turkey tail. The neuropathic DOC said to take that on an empty stomach 3 hours after a meal. Otherwise it doesn't do any good.

  • simone60
    simone60 Member Posts: 952

    I am going to add ashwaganda to my supplements. Does anyone have a recommendation on the best time to take that?

  • Frisky
    Frisky Member Posts: 1,686

    hi Simone, I take 2 pills with breakfast and 2 pills in the afternoon. My adrenals have been, however, under constant stress for the past five years...and I definitely feel better when I take the ashawaganda...I experience an overall sense of calm and wellbeing...

    Thanks for the heads up about taking the turkey tail on an empty stomach, that might explain why have not seen any major changes...I was taking it with food...

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    I will also start with ashwaganda. I hope it help me with weakness / lack of appetite, insomnia.

  • Frisky
    Frisky Member Posts: 1,686

    I'm sure you can benefit from it Sonia, considering the stress we all have to deal with on a daily basis...supporting our adrenals is very important...

  • husband11
    husband11 Member Posts: 1,287

    I see that my Canadian source of Panacur is all out of the packets of granules. There are other sources, but not as cheap. I'm thinking this is a sign that people are ordering it for cancer treatment here in Canada.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Frisky, I hope so ... I don't know what is happening to me, I can't recover some energy after treatment. I am very thin and I am not hungry at all, I'm feeling sick, I cannot sleep ... today I had to go to the hospital for a study and I couldn't go because I felt very weak and had no one to go with me ... I'm sorry to post this when there are people who are worse than me, but how can I continue if my body does not respond to me? Sorry guys. I think there are people in stage IV who at this moment feel better and have more health than me ... I really don't understand people who get upset because an earlier stage publishes ... sometimes you don't known what kind of hell that person is living. I appreciate that none of you made me feel bad posting here when this thread was IV only... I hope that people who discriminate get something good from it. Greater health, for example, because that is what we all want.

    This post is not related to any of you, friends, but surely many will understand

  • Frisky
    Frisky Member Posts: 1,686

    here too Husband...especially on Amazon the prices vary wildly...I'm buying the 4grams package which can be divided in various dose depending on how much you're taking. That's th best value.

    I'm currently taking 4grams @day only 2 days off

  • husband11
    husband11 Member Posts: 1,287

    I can buy a whole pound of the powder, 454 grams for around $240 cdn, but that's a lot of fenbendazole. I doubt any stranger would be comfortable in splitting it with us, that's just too sketchy sounding. There's lots of the liquid version available, but we would like to avoid the paraben used as a preservative.

  • snooky1954
    snooky1954 Member Posts: 850

    Sonia, I'm so sorry that you are feeling so bad. You had a lot of rads which are probably causing your systems. Ask your ONc. After rads on my spine in July, I felt like what you are describing. Sorta fluish but no fever.Esp. the fatigue, weakness. It still has not completely cleared up (and I only had 10) I found a radiation detox recipe which I'll find for you. Been busy doing colon, liver and kidney detoxs last few weeks. I had a hunch that between taxol and rads that I got my fungus issue stirred up.

    Oh my Just remembered you saying that you were taking oil of oregano. Are you in a healing crisis? If it were me I"d quit taking that until your body is strong enough for the fight. (please not telling you what to do, as you know so much more about alternative's than I do) I quit Fenben for two weeks because I thought I was having just too much die off

    And my tumor marker from 10 days ago has dropped. Not drastically but it dropped.

    Main thing is everyone on this board told me that rads really make you fatigued and it usally starts after you finish.

    Praying for you Sonia

  • mysticalcity
    mysticalcity Member Posts: 184

    Yndorian1 --I agree with Snooky--you had a lot of rads which I think you are just feeling the backlash of all that and might for the next few weeks even. Just try to rest and go with what your body tells you. Holding you close in prayer that you feel great strength and energy and your appetite coming back. But again after all the rads you had--I think that might take a few weeks. You are barely done with that assault on your body/system.

    Hugs.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Thanks Snooky, I thank you so much because I really DIDN'T think about that ... it is very likely to be that since I am taking many things (I am so afraid of my next scans) Never stop telling me what you think I should do, I respect your opinion and experience a lot. I think I also have to clean my liver and kidneys ... thanks for reminding me!

    I'm really happy about those lower TMs. I suppose that when TMs go up it can be for many reasons, but when they go down ... it is clear that this is good news! ❤❤❤

    Mysticalcity: thanks too. Sorry for this explosion here. Clearly today is not a good day for me, I appreciate the support

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Husband, I think I read in Joe's face that one of the success stories was using the liquid version that contains parabens and it still worked for her... I suppose it would be preferable to use the paraben version rather than suspend treatment due to lack of supplies ...

  • Frisky
    Frisky Member Posts: 1,686

    Dear Sonia,

    I'm sorry to have missed your prior post....I too was unable to eat and enjoy foods after my own rads and lost a lot of weight. What made an immediate difference was a natural product called D-ribose. Let me know if you can get it in your country...is used by athletes. Is available on Amazon here...

    I hope you start to feel better, and please don't hesitate to share your problems with us, sometime we can help, most of the time you're the one helping and offering thoughtful solutions to us.

    We're all in this together, and it's important for everyone to feel safe and welcomed.I hope you start to feel better and recover your strength soon...

    One more thing...sonia, please measure your blood pressure, sometime that’s the culprit, and increasing liquids and salty snacks can resolve the weakness and the feeling like you’re gonna faint.

  • Frisky
    Frisky Member Posts: 1,686

    Husband, I would gladly share the pound with you, except I bought a large supply many months ago...expecting the prices to go up...

    Maybe someone else will be interested...

  • husband11
    husband11 Member Posts: 1,287

    Thanks All, my wife just called them and they told her they just got stock in, and haven't updated the website yet. They told her they were selling an extraordinary amount in the last two months. I wonder if the actual manufacturor is going to run out at some point in time due to increased demand?

    Snooky, congrats on the dropping tumor marker. That is good for sure.

    Frisky, you are no doubt a great cook.

  • Frisky
    Frisky Member Posts: 1,686

    Thanks Husband...Yes, I happened to have natural instincts about food and cooking...I was after all my mother's sous chef till I left Italy in my 20's...But now it's a whole other type of cooking trying to marry great taste and nutrition...

    that's great news about the Panacur-C...I don't think they're going to run out and I hope lots of people benefit from it...I haven't given up yet...

    What they might do is require a prescription which of course will make it very expensive and harder to get...without having a sick dog...That's what I fear the most.

  • husband11
    husband11 Member Posts: 1,287

    If panacur / fenbendazole doesn't work, then I would try ivermectin. The ivermectin has a lot of animal research to back up its anti-cancer properties. Some of it even breast cancer. Plus it is a pharmaceutical given to humans, so we know about dosages and limits.

  • Frisky
    Frisky Member Posts: 1,686

    Yes! that's another option, I'm concerned about the liver though...is it as safe on the liver as the FZ you think?

    on the other hand...protecting the liver and dying from progression ain't gonna do nobody any good either...

  • husband11
    husband11 Member Posts: 1,287

    Ivermectin and the liver. That's a bit of a complicated subject.

    It is to be used with caution in cases of liver disease. But here is my question, does liver mets mean liver disease in the sense that they mean? Yes, its a disease affecting the liver, but with many patients having liver mets, liver function is unimpaired. It is only once the mets become really extensive do liver value rise to dangerous levels. Here is a quote from one site:

    Ivermectin is extensively metabolized in the liver and should be used cautiously in patients with hepatic disease. Dosage adjustments may be needed, although specific recommendations are not currently available. The manufacturer does not recommend that ivermectin treatment be excluded in patients with liver disease.

    From another source, (NIH Livertox) :


    OVERVIEW
    Ivermectin

    Introduction

    Ivermectin is an antiinfective agent with activity against several parasitic nematodes and scabies and is the treatment of choice for onchocerciasis (river blindness). It is typically given as one or two oral doses. Ivermectin therapy has been associated with minor, self-limiting serum aminotransferase elevations and very rare instances of clinically apparent liver injury.

    Background

    Ivermectin (eye" ver mek" tin) is a macrocyclic lactone and semisynthetic derivative of avermectin which is produced by Streptomyces avermitilis. Ivermectin has potent activity against several parasites and arthropods. It believed to act by interference with a glutamate gated chloride channel, which interferes with the parasite's neural and neuromuscular transmission. It has a broad spectrum of activity against several nematodes (Ascaris, Trichuris, Ancylostoma), cestodes (Taenia) and trematodes (Fasciola, Schistosoma). Ivermectin has particularly potent activity against onchocerciasis (river blindness) and lymphatic filariasis, which are important endemic diseases in Africa and South America. Ivermectin was approved for use in the United States in 1996 for strongyloidiasis and onchocerciasis. In other countries it is also approved for use in scabies, lice infestation and ascariasis. Ivermectin is available in tablets of 3 mg under the brand name Stromectol. For treatment of strongyloidiasis, the recommended dose for adults is a single oral dose of 15 mg (200 μg/kg). Ivermectin is also available in topical forms for therapy of rosacea and head lice. Oral ivermectin is generally well tolerated, but side effects can include diarrhea, gastrointestinal upset, headaches, fever, rash and itching, most of which are due to the effect of ivermectin on the helminth and a reaction to their death, release and expulsion.

    Hepatotoxicity

    Single dose therapy with ivermectin has been associated with a low rate of serum aminotransferase elevations. A single case of clinically apparent liver injury has been reported after ivermectin use (Case 1). The onset of injury occurred 1 month after a single dose and was characterized by a hepatocellular pattern of serum enzyme elevations without jaundice. Recovery was rapid and complete.

    Likelihood score: D (possible rare cause of clinically apparent liver injury).

    Mechanism of Injury

    Ivermectin acts by interference with chloride channels that are important in neuromuscular activity in parasitic worms and protozoa, but has little activity against mammalian neural transmission. The mechanism by which it might cause liver injury is unknown.

    Outcome and Management

    Ivermectin is usually well tolerated and the liver injury reported with its use has been mild and self-limited in course. Ivermectin has not been associated with acute liver failure or chronic liver injury.

    Drug Class: Antihelmintic Agents

    A manufacturor's monograph is always an excellent source of details on a drug. Unfortunately it sheds no light on the issue of persons having pre-existing liver disease. It is nonetheless quite interesting information on the drug:

    A link to Merk's monograph on Stromectol:

    https://www.merck.ca/static/pdf/STROMECTOL-PM_E.pd...

  • Frisky
    Frisky Member Posts: 1,686

    Thank you for all this useful information Husband...it’s definitely something to consider when the time comes...for me it will likely be after my next pet scan...date TBD

  • husband11
    husband11 Member Posts: 1,287

    The patient monograph says that while it uses cyp3A4 liver enzyme, it does not inhibit it. So that means it won't interfere with the metabolism of other drugs.

  • simone60
    simone60 Member Posts: 952

    Sonia,

    Sorry to hear you are feeling so poorly. I agree with the others, your body is probably trying to recover from the rads. I hope you feel better soon.

    Snooky,

    So glad to hear your TMs went down. I may have missed it but are you feeling any better?

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Frisky, thanks for the ribose data, is very expensive here (like everything imported), but thanks to that I discovered that I could benefit from a creatine supplement. This is also useful for all those who are thin and without muscle mass, since it apparently helps store glucose in the muscles for energy, and has an action similar to metformin, although milder. I will definitely try it ... has anyone here taken creatine to combat muscle loss?

  • JFL
    JFL Member Posts: 1,373

    Hello all. I haven't had a chance to read all the posts, this thread moves quickly sometimes.

    Frisky, thanks for your support!

    Simone, as for ashwagandha, what I learned is that it doesn't stay in the system long and is best to take multiple times a day (3 was recommended). I haven't moved to a 3-pill dose yet because I have to be careful as I am already on levothyroxine for low thyroid. I take two pills per day and space them out. If I were not on levothyroxine, I would be taking 3 right now.

    Thanks for the empty stomach - 3 hours before meal advice for turkey tail. The bottle states that they can be taken with or without food. It can cause some stomach upset at first although I don't recall really having that. I take it with lunch and then in the night on an empty stomach. I may move my lunch dose to first thing in the morning.

    I had my COC MO appointment tonight and meds will be ordered tomorrow. She recommended I start milk thistle as well for liver support. As for supplements not to take, she mentioned berberine (interferes with atorvastatin metabolism), fenben (for obvious reasons, given mebendazole is part of the protocol), CoQ10 (blocks atorvastatin action) and no grapefruit or pomegranate. I will have to quit the CoQ10 and pomegranate juice and order some milk thistle. I am going to start on a lower dose of atorvastatin at first given that my liver enzymes are a bit elevated but not too much over normal. I asked why the rotation of mebendazole and doxicycline month per month and it is due to those taxing the liver and kidneys. However, in the event of brain mets and progression of other mets, they will be given at the same time as the benefits outweigh the risks in that case.

    For those who take milk thistle, what guidelines do you follow (dose, time of dosing, brand, etc)?


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