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alanpvegas - miatake D
Alan,
I just had my second Doxol treatment today. I have the miatake D in capsule form and am wondering when and how to take it. I started after my lastr Doxil and took it twice a day. The naturopath I was seeing said that I should not and antioxidants for 48 hrs before chemo and 48 hrs after. Would this apply to the miatake D?he Dr said that Dovil stays in the body longer thAN other chemos. Do you think that means I should wait longer to start up the Vit C, etc. So many question - do you have any of the answers?
Annie
I just had my second Doxol treatment today. I have the miatake D in capsule form and am wondering when and how to take it. I started after my lastr Doxil and took it twice a day. The naturopath I was seeing said that I should not and antioxidants for 48 hrs before chemo and 48 hrs after. Would this apply to the miatake D?he Dr said that Dovil stays in the body longer thAN other chemos. Do you think that means I should wait longer to start up the Vit C, etc. So many question - do you have any of the answers?
Annie
Annie,
I almost missed one of your questions...you asked about PH levels. Well, I found this online:
"The environment around most tumors is acidic, having lower pH levels than the rest of the body. Levels are even more acidic inside tumors due to lack of blood and lactic acid buildup. They deduced that a pH-sensitive drug package could thus selectively target the tumor cells."
Is this what you are looking for? Not sure if your query is regarding some sort of treatment or not. This particular statement was from an article where they are using nano technology to attack ovarian cancer. Here is the article: http://www.technologyreview.com/Nanotech/17396/
I assume, in the future, depending on how lab studies go there will eventually be clinical trials for thinks such as this. Let me know if this is what you were looking for!
I almost missed one of your questions...you asked about PH levels. Well, I found this online:
"The environment around most tumors is acidic, having lower pH levels than the rest of the body. Levels are even more acidic inside tumors due to lack of blood and lactic acid buildup. They deduced that a pH-sensitive drug package could thus selectively target the tumor cells."
Is this what you are looking for? Not sure if your query is regarding some sort of treatment or not. This particular statement was from an article where they are using nano technology to attack ovarian cancer. Here is the article: http://www.technologyreview.com/Nanotech/17396/
I assume, in the future, depending on how lab studies go there will eventually be clinical trials for thinks such as this. Let me know if this is what you were looking for!
Hey there.....I can understand the sensitivity of the issue at hand.....as an ovarian cancer patient on chemo I was searching for something, anything that might help....even just a little bit.....I did lots of reading ......I researched until my eyes just about fell out of my head and my mind was as organized as a ball of yarn after a cat got ahold of it! Alan, I read all your posts and you have led me to outstanding articles and wonderfully helpful information and I thank you for all of it. I hope you continue posting as you are a valuable part of this conversation. Reminding women to pass an idea past their onc should not be necessary but is probably a wise thing to encourage.....still...even with saying that....the ultimate decision remains with us....the patient..... I am here to remind all here that doctors are not gods and frequently are too busy to stay up on new data....the drug companies get the attention of the docs way too much.....it is up to us to shine lights on new info and become directly involved with our treatment. In my opinion, we as patients, can contribute tremendously to the outcome of our treatment.....a questioning mind necessitates creative answers and solutions......knowledge is power....so keep the questions comming and insist on knowledegable , educated answers.
Peace.
dian
Peace.
dian
***Annie:
Me and my mom take this one as well (I take 2 capsules just for normal maintenance, mom takes 2 for her 2nd dose out of the 3x a day), I know which one you are taking. What I like about this one is that it also contains the crude maitake powder in addition to the D-fraction component and a small amount of Vit-C to help with the synergy.
For Doxil, yes it is designed to stay longer in the system. it does this by that little fat bubble to help evade the immune system. I don't have the exact 'half life' of it but I can research if you'd like.
I'd recommend keeping track of (in general for your records or to show the dr) your progress and symptoms. How you feel each day, pain ratings, etc.
You may want to go to www.maitake.com and ask for information packet they can USPS to you with plenty of clinical research you can give your oncologist. They did this for me along with a book. Any question you have, they are very helpful in giving to you and have a medical staff that can talk all that medical stuff :)
***Pam:
That's a valid point/issue about the first two paragraphs...I guess sometimes we write like we talk! MDF is truely one of the safer 'supplements' you can take, that's why the FDA let them skip p1 toxicity trials...it's food based so you have as much risk of taking MDF as you do a glass of orange juice (that's a bad comparisson but hey). But it's why I include citations and links and always encourage to research so you can discuss with the medical team. I mean you look at some books (even govt. ones) about nutrition for cancer patients and they mention peanuts. Well if you are allergic to peanuts you don't want to take it. We can put cautions on everything. I think the caveat medhelp.org has at the bottom of every page says it all. :)
Hey, also on the soy...you are 50% right, sorta. You don't have to be afraid of all soy. The one American's rarely eat or take is 'fermented soy', this is the one with the good stuff! The unfermented soy is the one that is, not to say 'bad', but not as healthy and becomes the default lump of all soy claims. In-fact a component of fermented soy is in phase 3 trials to be the next gold standard for ovarian cancer treatment. Research on it (prior to this drug) have shown it's positive effects on ovarian cancer. Even one woman took high dosage of fermented soy drink and went from less than a year to live with plat resistant ovca to a complete clinical response. The HRT is what I don't like. I know there is controversy both ways about it, but I agree it's better to stay clear from that! The fermented soy (and such) phytoestrogens mimic estrogen but much weaker. it is assumed this is how they are so effective against estrogen type cancers, whereas HRT is too similar and powerful to the normal. But this is a topic for another post :)
Good luck to you both and take care!
Alan
Me and my mom take this one as well (I take 2 capsules just for normal maintenance, mom takes 2 for her 2nd dose out of the 3x a day), I know which one you are taking. What I like about this one is that it also contains the crude maitake powder in addition to the D-fraction component and a small amount of Vit-C to help with the synergy.
For Doxil, yes it is designed to stay longer in the system. it does this by that little fat bubble to help evade the immune system. I don't have the exact 'half life' of it but I can research if you'd like.
I'd recommend keeping track of (in general for your records or to show the dr) your progress and symptoms. How you feel each day, pain ratings, etc.
You may want to go to www.maitake.com and ask for information packet they can USPS to you with plenty of clinical research you can give your oncologist. They did this for me along with a book. Any question you have, they are very helpful in giving to you and have a medical staff that can talk all that medical stuff :)
***Pam:
That's a valid point/issue about the first two paragraphs...I guess sometimes we write like we talk! MDF is truely one of the safer 'supplements' you can take, that's why the FDA let them skip p1 toxicity trials...it's food based so you have as much risk of taking MDF as you do a glass of orange juice (that's a bad comparisson but hey). But it's why I include citations and links and always encourage to research so you can discuss with the medical team. I mean you look at some books (even govt. ones) about nutrition for cancer patients and they mention peanuts. Well if you are allergic to peanuts you don't want to take it. We can put cautions on everything. I think the caveat medhelp.org has at the bottom of every page says it all. :)
Hey, also on the soy...you are 50% right, sorta. You don't have to be afraid of all soy. The one American's rarely eat or take is 'fermented soy', this is the one with the good stuff! The unfermented soy is the one that is, not to say 'bad', but not as healthy and becomes the default lump of all soy claims. In-fact a component of fermented soy is in phase 3 trials to be the next gold standard for ovarian cancer treatment. Research on it (prior to this drug) have shown it's positive effects on ovarian cancer. Even one woman took high dosage of fermented soy drink and went from less than a year to live with plat resistant ovca to a complete clinical response. The HRT is what I don't like. I know there is controversy both ways about it, but I agree it's better to stay clear from that! The fermented soy (and such) phytoestrogens mimic estrogen but much weaker. it is assumed this is how they are so effective against estrogen type cancers, whereas HRT is too similar and powerful to the normal. But this is a topic for another post :)
Good luck to you both and take care!
Alan
Alan,the maitake D I have is Grifron brand. The label lists
Maitake Mushroom Powder 300mg
Maitake Mush Standardized Extract PD-fraction 20 mg
I had my 2nd Doxil on Wed and am concerned because now I have swelling and disconfort in my left upper leg and groin area. I first thought I might have pulled a muscle but now think it is probably lymph nodes. Dr was going to switch me to gemzar/cisplatin on this last chemo but decided to give Doxil one more try. I'm thinking the change might have been a good idea.
do you know how long Doxil stays in the body doing it's thing? Dr said it stays along longer than other drugs. I am just worried that my Doxil is not doing what I want it to.
Do you know anything about the PH level and cancer?
thanks for all the info!
Annie
Maitake Mushroom Powder 300mg
Maitake Mush Standardized Extract PD-fraction 20 mg
I had my 2nd Doxil on Wed and am concerned because now I have swelling and disconfort in my left upper leg and groin area. I first thought I might have pulled a muscle but now think it is probably lymph nodes. Dr was going to switch me to gemzar/cisplatin on this last chemo but decided to give Doxil one more try. I'm thinking the change might have been a good idea.
do you know how long Doxil stays in the body doing it's thing? Dr said it stays along longer than other drugs. I am just worried that my Doxil is not doing what I want it to.
Do you know anything about the PH level and cancer?
thanks for all the info!
Annie
Not harsh at all....and I love a good debate...like I said, you are brillant, and your research is invaluable....I have the utmost respect for you and thank you for sharing all that wonderful information.....I am not concerned about anyone taking any supplement....I am concerned about telling someone it is okay to take it....I think I got thrown by the first 2 paragraphs of your response to Annie
"Hi Annie, it's ok to take the powder form. In-fact you can get capsule forms of the liquid version from some manufacturers and Maitake Products Inc. is working on a capsule formulation of the pro version coming out shortly. In-fact the powder form can be in good in some instances.
Just depending on your weight is the therapudic dose you should take...let's say roughly anywhere from 20mg low dose to about 50 or 60mg high dose. My mom takes around 40 to 50 mg per day (spread over 3x per day). What brand are you taking? I can help you figure it out from there."
It really isn't okay for Annie or anyone to take a supplement while on chemo with discussing it first...that is what I care about...that people discuss with their doctors and bring them the info if the doctors don't have it.
I just don't want anyone to think that it is OK....there are people that would tell me to taking OTC HRT is okay or taking soy is fine...know what, for me it isn't...the soy mimics estrogen which could cause problems for me.
I hope to have a great weekend...and wish you the same!!!!
Keep up the great work, here and on your website.
All the best to you and your mom!!!
Pam
"Hi Annie, it's ok to take the powder form. In-fact you can get capsule forms of the liquid version from some manufacturers and Maitake Products Inc. is working on a capsule formulation of the pro version coming out shortly. In-fact the powder form can be in good in some instances.
Just depending on your weight is the therapudic dose you should take...let's say roughly anywhere from 20mg low dose to about 50 or 60mg high dose. My mom takes around 40 to 50 mg per day (spread over 3x per day). What brand are you taking? I can help you figure it out from there."
It really isn't okay for Annie or anyone to take a supplement while on chemo with discussing it first...that is what I care about...that people discuss with their doctors and bring them the info if the doctors don't have it.
I just don't want anyone to think that it is OK....there are people that would tell me to taking OTC HRT is okay or taking soy is fine...know what, for me it isn't...the soy mimics estrogen which could cause problems for me.
I hope to have a great weekend...and wish you the same!!!!
Keep up the great work, here and on your website.
All the best to you and your mom!!!
Pam
Hey just wanted to say have a great weekend and sorry if I sounded harsh, but I was not prepared for you to say that!
I forgot to add:
Also I have had very intelligent conversations about supplements with some doctors (as I've stated) especially one oncologist who reviewed what I found on Maitake. We just didn't blindly start taking it. I never put my seal saying 'safe' period, I agreed with the other prior post and put in an additional restriction on taking it. I mentioned who the FDA (who approves your chemo drugs) let it past stage 1 toxicity studies based on it's long standing safety profile (longer than any chemo drug out there for sure). I also mentioned how it has never reacted negatively with any chemo drug, in-fact has been shown to reduce it's side effects and based on the drug make it more effective.
Is that a seal of approval saying it's safe? No, it's information pure and simple...the oncologist may not know this information. *May* not know this. They may have a general 'understanding', but there are tons of clinical trials, research, etc. on MDF...I doubt they will know every single one by heart. It's our jobs as patients, doctors, caregivers, etc. to be well informed like the doctors, to find how different things work and go from there. Not saying to go your own route alone, but be more well informed to discuss this with the doctor. When I see my primary care physician, I do research before I see them if there is an issue and ask them their opinion on what I find. Just recently me and my mom brought her oncologist a study we found on medline about a possible treatment for something unrelated to cancer and he said it wasn't necessary so we didn't do it, we agreed with his opinion.
I guess I'm just confused why Maitake is this scary mystery 'supplement'. I mean, what if she started taking V8 juice? or Cranberry juice? Don't they have antioxidants? Should she tell her oncologist? Where do we draw the lines on nutritional supplementation which is all MDF is? I mean just because you can't buy Maitake mushroom in your local supermarket here in the States doesn't make it mysterious or dangerous.(1)
Take care!
Alan
Citations:
(1) No citation...all of you do your own homework, talk to your doctor, be safe, be happy :)
I forgot to add:
Also I have had very intelligent conversations about supplements with some doctors (as I've stated) especially one oncologist who reviewed what I found on Maitake. We just didn't blindly start taking it. I never put my seal saying 'safe' period, I agreed with the other prior post and put in an additional restriction on taking it. I mentioned who the FDA (who approves your chemo drugs) let it past stage 1 toxicity studies based on it's long standing safety profile (longer than any chemo drug out there for sure). I also mentioned how it has never reacted negatively with any chemo drug, in-fact has been shown to reduce it's side effects and based on the drug make it more effective.
Is that a seal of approval saying it's safe? No, it's information pure and simple...the oncologist may not know this information. *May* not know this. They may have a general 'understanding', but there are tons of clinical trials, research, etc. on MDF...I doubt they will know every single one by heart. It's our jobs as patients, doctors, caregivers, etc. to be well informed like the doctors, to find how different things work and go from there. Not saying to go your own route alone, but be more well informed to discuss this with the doctor. When I see my primary care physician, I do research before I see them if there is an issue and ask them their opinion on what I find. Just recently me and my mom brought her oncologist a study we found on medline about a possible treatment for something unrelated to cancer and he said it wasn't necessary so we didn't do it, we agreed with his opinion.
I guess I'm just confused why Maitake is this scary mystery 'supplement'. I mean, what if she started taking V8 juice? or Cranberry juice? Don't they have antioxidants? Should she tell her oncologist? Where do we draw the lines on nutritional supplementation which is all MDF is? I mean just because you can't buy Maitake mushroom in your local supermarket here in the States doesn't make it mysterious or dangerous.(1)
Take care!
Alan
Citations:
(1) No citation...all of you do your own homework, talk to your doctor, be safe, be happy :)
Alan I respect you a lot and think that you are absolutely brillant and are doing an amazing job with your website...but PLEASE .... it is not up to you to tell someone that it is safe to take a supplement. I am thrilled that this is working for your mom and that your family has made the decision.....but again, this is something that needs to be discussed with someone's oncologist.
I also have to disagree with your statement regarding Oncologists not being up on the latest. I am sorry that you feel that way about your doctors. I can tell you that you can have a very intelligent conversation about supplements, out of the box treatments on various issues with my oncologist...it is their business to know what is out there!!!!
Again, I do not doubt that there is merit in this product and I hope that it keeps your mom's cancer at bay and that she lives a very long productive life....I just think that it is imperative to discuss anything taken along with chemo with your Oncologist. And if you aren't comfortable with your doctor, in this great country we can choose, yes, maybe we have to drive for an hour or two to another Oncologist, but, a two hour, three hour drive for me to be comfortable with my doctor in a life crisis situation such as OvCa...I'd make that trip.
Annie - I beg you, please before you begin taking this product, you discuss it with your oncologist. This is a forum for us to offer suggestions and feedback, we are not medical personal and it is not up to anyone here to tell us what is safe for us to take and what is not.
I also have to disagree with your statement regarding Oncologists not being up on the latest. I am sorry that you feel that way about your doctors. I can tell you that you can have a very intelligent conversation about supplements, out of the box treatments on various issues with my oncologist...it is their business to know what is out there!!!!
Again, I do not doubt that there is merit in this product and I hope that it keeps your mom's cancer at bay and that she lives a very long productive life....I just think that it is imperative to discuss anything taken along with chemo with your Oncologist. And if you aren't comfortable with your doctor, in this great country we can choose, yes, maybe we have to drive for an hour or two to another Oncologist, but, a two hour, three hour drive for me to be comfortable with my doctor in a life crisis situation such as OvCa...I'd make that trip.
Annie - I beg you, please before you begin taking this product, you discuss it with your oncologist. This is a forum for us to offer suggestions and feedback, we are not medical personal and it is not up to anyone here to tell us what is safe for us to take and what is not.
Hi nyc lady,
First off I *never* told her to *not* talk about this with her oncologist (that is what you are supposed to do), but I think you are incorrect to say that they know about everything out there. It's just not humanly possible. Sure there are the journals they read, seminars, etc. but that still doesn't mean they will retain everything...that is why the oncologist goes back and researches based on what you ask them...if they do that. In my 'final thought' I told her to bring her research to the dr and let him explain to her why she should *not* take it or why she could. In fact here is what I said:
"Let your doctor review that study I cite, let him know what research you have on MDF. Heck, he can even contact Maitake Products Inc. out of NJ, they have doctors who can speak to him on all the technical aspects of this that would make our heads spin."
I think that was clear enough that she should do that?
Now for my mom, I'm not saying this is a cure or treatment, it's adjunct therapy. It never takes the place of whatever chemo she is on and I won't say (just like in my prior post) that it is the cause. Could simply be the chemo as well. Sometimes you have to do your own research and bring it to their attention, that is all I'm saying. If you rely 100% on the physician, you rely 100% on what they know *completely* (what that means is that they may be aware of other methods, but they are comfortable with ones they believe in or know fully, etc.). Not saying all are like that but physicians are human too.
For MDF, if we were talking about 'eating' a mushroom from the supermarket, would this even be an ongoing post? You eat cream of wheat and are taking in almost the same beta glucans....should she tell her oncologist she is eating cream of wheat? Do you understand my point? MDF seems too much like a supplement but it's a natural substance. Sure, tell the oncologist but what I'm saying is if they have an issue with it, that is when you show them the research to make the decision. Now I saw your part about being safe at the bottom of your post...are you implying that I'm misleading her? I have provided citations at the bottom of my post. She can review all that and bring it to her doctor (like I told her to).
Well, annie, I'm sorry the replies to your post went in all directions!
First off I *never* told her to *not* talk about this with her oncologist (that is what you are supposed to do), but I think you are incorrect to say that they know about everything out there. It's just not humanly possible. Sure there are the journals they read, seminars, etc. but that still doesn't mean they will retain everything...that is why the oncologist goes back and researches based on what you ask them...if they do that. In my 'final thought' I told her to bring her research to the dr and let him explain to her why she should *not* take it or why she could. In fact here is what I said:
"Let your doctor review that study I cite, let him know what research you have on MDF. Heck, he can even contact Maitake Products Inc. out of NJ, they have doctors who can speak to him on all the technical aspects of this that would make our heads spin."
I think that was clear enough that she should do that?
Now for my mom, I'm not saying this is a cure or treatment, it's adjunct therapy. It never takes the place of whatever chemo she is on and I won't say (just like in my prior post) that it is the cause. Could simply be the chemo as well. Sometimes you have to do your own research and bring it to their attention, that is all I'm saying. If you rely 100% on the physician, you rely 100% on what they know *completely* (what that means is that they may be aware of other methods, but they are comfortable with ones they believe in or know fully, etc.). Not saying all are like that but physicians are human too.
For MDF, if we were talking about 'eating' a mushroom from the supermarket, would this even be an ongoing post? You eat cream of wheat and are taking in almost the same beta glucans....should she tell her oncologist she is eating cream of wheat? Do you understand my point? MDF seems too much like a supplement but it's a natural substance. Sure, tell the oncologist but what I'm saying is if they have an issue with it, that is when you show them the research to make the decision. Now I saw your part about being safe at the bottom of your post...are you implying that I'm misleading her? I have provided citations at the bottom of my post. She can review all that and bring it to her doctor (like I told her to).
Well, annie, I'm sorry the replies to your post went in all directions!
Hi Annie, it's ok to take the powder form. In-fact you can get capsule forms of the liquid version from some manufacturers and Maitake Products Inc. is working on a capsule formulation of the pro version coming out shortly. In-fact the powder form can be in good in some instances.
Just depending on your weight is the therapudic dose you should take...let's say roughly anywhere from 20mg low dose to about 50 or 60mg high dose. My mom takes around 40 to 50 mg per day (spread over 3x per day). What brand are you taking? I can help you figure it out from there.
OK, I actually wrote a 30 paragraph response to the other two replies you received....I'm going to spare you that (unless you'd like me to email you) and summarize. I respect these two people but I need to reply:
1) Maitake D-Fraction (MDF) has an excellent safety profile. It has been allowed to SKIP the traditional FDA Phase 1 toxicity studies. Whatever clincial trial drug or chemo drug you are on now has not done this, guaranteed. MDF is in phase 2 FDA approved clinical trials.
2) I'll concede that if you have an autoimmune disorder or allergic to mushrooms, you should not take it. Do you have either of these?
3) Trust your oncologist...sometimes you have no choice. Another viewpoint is that because they are an oncologist does not mean they know everything (nor should they, they specialize in cancer/chemotherapy not supplements...typically). If you go to them and ask about Maitake D-Fraction you will either get a puzzled look and told don't take it (without an explanation) or maybe they will probe a little more. "A mushroom?" "What do you smoke it?" (Yeah some oncologists have actually said that to their patients). So...no vitamin C (even though there is no scientific basis for not taking it during chemo) per your oncologist...ask them why. Ask for citations, studies, medline, etc. You have a right to be told WHY it is unsafe with your chemo. Yes you should trust your oncologist, they are after all trying to save your life, but understand many have lots of patients and little time. They don't want to research your supplementation or maybe they have deep seated beliefs on the matter (I've heard of some who believe that diet/nutrition still has nothing to do with cancer...an old belief from the 70's....even though we know that is not true anymore).
Let me go further, for a second, on vitamin c. Did you know the 'study' (which it wasn't, wouldn't pass FDA standards) that caused this belief would require you to take MASSIVE amounts of vitamin C in order to affect your chemo? Heck if I took the amounts that the study did I'd hate to think of how I'd turn out! :)
4) You're on Doxil. This is important little tid-bit and you'll find out in this section. This is a smart little drug. It hides itself in a fat bubble called liposome to help evade the natural immune system response so it can deliver it's toxic dose to the cells. Now I can see some people saying..."see! if you boost the immune system, it will hinder doxil". That's a valid concern, but not warranted when taking MDF. Now I'm no 'official' researcher, I don't hold a PhD, but from what I can tell it does not have any effect against doxil (even vitamin c) but can actually be *helpful*:
In-fact Doxil, of which doxorubicin is a main component, has been used with Maitake D-Fraction. In a 2004 study I've found (that was done in conjunction with the major cancer center Memorial Sloan-Kettering) showed patients who had MDF used with doxorubicin had lower doxorubicin toxicity levels without reducing the drugs effectiveness and increased bone marrow production(1)
For Vitamin C, heck even an old 1996 study shows it helps doxorubicin(2) and also this one (3)
5) Beta Glucans (of which Maitake D-Fraction) has the most of effectively, is used as 'standard' cancer care worldwide. In-fact a beta glucan (from another medicinal mushroom) has been approved by the Japanese equivalent of the FDA for years now via IV. One medline study I've seen shown an advanced ovarian cancer patient who was put on this had an excellent clinical response.
FINAL THOUGHT: You are on Doxil and want to take Maitake D-Fraction and vitamin C. I'd say if you stick with a good multivitamin you are getting all the V-C you need, you shouldn't need any extra. For Maitake, I see no reason you shouldn't take it. Let your doctor review that study I cite, let him know what research you have on MDF. Heck, he can even contact Maitake Products Inc. out of NJ, they have doctors who can speak to him on all the technical aspects of this that would make our heads spin. What if your doctor still says no? Well, that's your decision...maybe you want to find a different oncologist, maybe you'll do what they say, maybe you won't tell them (over 50% of cancer patients do not tell their physicans they are on supplements). Neither is the right or wrong decision....but it's yours since you are the patient.
HERE IS WHAT WE DID: Start with a low dosage for one week (work this all around your ca-125 and ct-scan tests) and see your progress (keep a symptom diary). Increase to therapudic dosage. Monitor your progress prior to MDF implimentation and after implimentation. My mom was not responding to her clinical trial (actually was going to be taken off because it was rising too high). Went on MDF, by next ca-125 and ct-scan her counts when down 500 to her lowest level ever. My mom takes both the liquid (pro) and regular powder tablet version. (two tablets for the 2nd dose of the day which is about 20mg). All studies typically use crude maitake powder (which is usually in your powder d-fraction forms) along with the liquid version (just as FYI, there is no set way to do this).
Oh, btw, one of her gynecologic oncologists did know she was going on this. We presented him with all the findings I did on MDF and he reviewed them and said it couldn't hurt and could possibly help. He didn't knee jerk or criticize but reviewed and analyzed the data. What we hope all physicians would do.
-Alan
P.S.: Wow, I had a lot to say. This is not gospel so take what you want from this and discuss with your oncologist. If you need help finding studies or research let me know and I'll assist when I can. Please, I'm open to criticism...if anyone wants to pick apart what I've put here, please go ahead. Open communication and discussion is important in my opinion! The more information the better!
P.P.S.: Here is something else I found quickly on the internet about most of your concerns: http://www.doctormurray.com/articles/Chemotherapy.htm
Citations:
(1) Hong Lin et at., Maitake beta-glucan MD-fraction enhances bone marrow colony formation and reduces doxorubicin toxicity in vitro, International Immunopharmacoloyg, 4 (2004) 91-99
(2) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8635156&dopt=Abstract
(3) http://www.annieappleseedproject.org/vitaminc.html
Just depending on your weight is the therapudic dose you should take...let's say roughly anywhere from 20mg low dose to about 50 or 60mg high dose. My mom takes around 40 to 50 mg per day (spread over 3x per day). What brand are you taking? I can help you figure it out from there.
OK, I actually wrote a 30 paragraph response to the other two replies you received....I'm going to spare you that (unless you'd like me to email you) and summarize. I respect these two people but I need to reply:
1) Maitake D-Fraction (MDF) has an excellent safety profile. It has been allowed to SKIP the traditional FDA Phase 1 toxicity studies. Whatever clincial trial drug or chemo drug you are on now has not done this, guaranteed. MDF is in phase 2 FDA approved clinical trials.
2) I'll concede that if you have an autoimmune disorder or allergic to mushrooms, you should not take it. Do you have either of these?
3) Trust your oncologist...sometimes you have no choice. Another viewpoint is that because they are an oncologist does not mean they know everything (nor should they, they specialize in cancer/chemotherapy not supplements...typically). If you go to them and ask about Maitake D-Fraction you will either get a puzzled look and told don't take it (without an explanation) or maybe they will probe a little more. "A mushroom?" "What do you smoke it?" (Yeah some oncologists have actually said that to their patients). So...no vitamin C (even though there is no scientific basis for not taking it during chemo) per your oncologist...ask them why. Ask for citations, studies, medline, etc. You have a right to be told WHY it is unsafe with your chemo. Yes you should trust your oncologist, they are after all trying to save your life, but understand many have lots of patients and little time. They don't want to research your supplementation or maybe they have deep seated beliefs on the matter (I've heard of some who believe that diet/nutrition still has nothing to do with cancer...an old belief from the 70's....even though we know that is not true anymore).
Let me go further, for a second, on vitamin c. Did you know the 'study' (which it wasn't, wouldn't pass FDA standards) that caused this belief would require you to take MASSIVE amounts of vitamin C in order to affect your chemo? Heck if I took the amounts that the study did I'd hate to think of how I'd turn out! :)
4) You're on Doxil. This is important little tid-bit and you'll find out in this section. This is a smart little drug. It hides itself in a fat bubble called liposome to help evade the natural immune system response so it can deliver it's toxic dose to the cells. Now I can see some people saying..."see! if you boost the immune system, it will hinder doxil". That's a valid concern, but not warranted when taking MDF. Now I'm no 'official' researcher, I don't hold a PhD, but from what I can tell it does not have any effect against doxil (even vitamin c) but can actually be *helpful*:
In-fact Doxil, of which doxorubicin is a main component, has been used with Maitake D-Fraction. In a 2004 study I've found (that was done in conjunction with the major cancer center Memorial Sloan-Kettering) showed patients who had MDF used with doxorubicin had lower doxorubicin toxicity levels without reducing the drugs effectiveness and increased bone marrow production(1)
For Vitamin C, heck even an old 1996 study shows it helps doxorubicin(2) and also this one (3)
5) Beta Glucans (of which Maitake D-Fraction) has the most of effectively, is used as 'standard' cancer care worldwide. In-fact a beta glucan (from another medicinal mushroom) has been approved by the Japanese equivalent of the FDA for years now via IV. One medline study I've seen shown an advanced ovarian cancer patient who was put on this had an excellent clinical response.
FINAL THOUGHT: You are on Doxil and want to take Maitake D-Fraction and vitamin C. I'd say if you stick with a good multivitamin you are getting all the V-C you need, you shouldn't need any extra. For Maitake, I see no reason you shouldn't take it. Let your doctor review that study I cite, let him know what research you have on MDF. Heck, he can even contact Maitake Products Inc. out of NJ, they have doctors who can speak to him on all the technical aspects of this that would make our heads spin. What if your doctor still says no? Well, that's your decision...maybe you want to find a different oncologist, maybe you'll do what they say, maybe you won't tell them (over 50% of cancer patients do not tell their physicans they are on supplements). Neither is the right or wrong decision....but it's yours since you are the patient.
HERE IS WHAT WE DID: Start with a low dosage for one week (work this all around your ca-125 and ct-scan tests) and see your progress (keep a symptom diary). Increase to therapudic dosage. Monitor your progress prior to MDF implimentation and after implimentation. My mom was not responding to her clinical trial (actually was going to be taken off because it was rising too high). Went on MDF, by next ca-125 and ct-scan her counts when down 500 to her lowest level ever. My mom takes both the liquid (pro) and regular powder tablet version. (two tablets for the 2nd dose of the day which is about 20mg). All studies typically use crude maitake powder (which is usually in your powder d-fraction forms) along with the liquid version (just as FYI, there is no set way to do this).
Oh, btw, one of her gynecologic oncologists did know she was going on this. We presented him with all the findings I did on MDF and he reviewed them and said it couldn't hurt and could possibly help. He didn't knee jerk or criticize but reviewed and analyzed the data. What we hope all physicians would do.
-Alan
P.S.: Wow, I had a lot to say. This is not gospel so take what you want from this and discuss with your oncologist. If you need help finding studies or research let me know and I'll assist when I can. Please, I'm open to criticism...if anyone wants to pick apart what I've put here, please go ahead. Open communication and discussion is important in my opinion! The more information the better!
P.P.S.: Here is something else I found quickly on the internet about most of your concerns: http://www.doctormurray.com/articles/Chemotherapy.htm
Citations:
(1) Hong Lin et at., Maitake beta-glucan MD-fraction enhances bone marrow colony formation and reduces doxorubicin toxicity in vitro, International Immunopharmacoloyg, 4 (2004) 91-99
(2) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8635156&dopt=Abstract
(3) http://www.annieappleseedproject.org/vitaminc.html
Stage 4 OC, 8 rounds of taxol/carbo. I have been taking Reishi mushroom along with high level of vitamin C during my chemo. I did ask my ONC first and it's ok with her. Do a lot of research, read back the archives and discuss with your ONC with questions as to yeah or neah answer. Some drs are ok with vitamins and supplements, others are not.
I agree with NYC lady, check out anything that is a supplement with your oncologist. Testing of the alternative medicines is ongoing, and the action is not always known. Example Echinachea boosts the immune system, however if you have an autoimmune disease you can't take it. They don't know all the interactions these drugs and nutrients have on the specific medications we take. So please check. Good luck to you. Prayers are with you.
I am sure that there is merit to taking this supplement, but, I urge that you discuss the use of this as well as Vit C and anything else that you might take over the counter with your Oncologist.
There are reasons that you are going to the Oncologist that you personally use and I am sure that one of them is trust. If you trust your doctor, then trust their decision on taking any supplements.
Please, before taking anything it is imperative that you discuss it with your Oncologist.
There are reasons that you are going to the Oncologist that you personally use and I am sure that one of them is trust. If you trust your doctor, then trust their decision on taking any supplements.
Please, before taking anything it is imperative that you discuss it with your Oncologist.
I am taking the powder in capsule form. It's a carry over from my childhood when I did not do well with liquid medicine. You would think at 57 I would have grown out of it, but no such luck. Maybe I will get brave once I run out of the capsules and try the liquid stuff. Iwill have to check the bottle when I get home to see that I am taking the right amount.
Do you know anything about the PH level. A friend of a friend mentioned it this past weekend and I think I will check into it. Guess it can't hurt.
Do you know anything about the PH level. A friend of a friend mentioned it this past weekend and I think I will check into it. Guess it can't hurt.
Hi Annie!
Here is dosage information: http://www.alanpeto.com/ovarian_cancer/articles/2/4/Maitake-D-Fraction-and-Ovarian-Cancer/Page4.html
Hopefully you got the Maitake D-Fraction made by Maitake Products Inc out of New Jersey, they are the best. You said you had the capsule form...is that powder or liquid? Either way I'm going to assume it relates to about 22mg of Maitake D-Fraction.
If so, you want to take your therapudic dosage...that should be about 6 pills total, 3 times per day. Take it between meals (at least 20 minutes before or after pills...or longer if you can). Now it does have a synergetic response with Vitamin C, although the current studies show you don't have to take much vitamin c with it to have a great effect...as low as 500mg is what I've seen (or less).
Maitake D-Fraction is not an antioxidant, it is a 'beta glucan' which works on the immune system (among other things) so there should be no issues unless you have an autoimmune system disorder. In-fact, studies elsewhere have shown it can enhance chemotherapy and reduce it's side effects.
For vitamin c (in general), that's an old issue....many oncologists are *still* under the mistaken impression that it's bad to take antioxidants based on an old story with no scientific basis. Of course, you should do what your physician states but here is some information on it:
http://www.alanpeto.com/ovarian_cancer/blogs/13/Meta-analysis-finds-antioxidant-supplementation-safe-during-cancer-therapy.html
If you have any other questions, please fell free to ask! I'm writing this post after just waking up :)
Alan
------------
Ovarian Cancer Research Website
http://cancer.alanpeto.com/
Here is dosage information: http://www.alanpeto.com/ovarian_cancer/articles/2/4/Maitake-D-Fraction-and-Ovarian-Cancer/Page4.html
Hopefully you got the Maitake D-Fraction made by Maitake Products Inc out of New Jersey, they are the best. You said you had the capsule form...is that powder or liquid? Either way I'm going to assume it relates to about 22mg of Maitake D-Fraction.
If so, you want to take your therapudic dosage...that should be about 6 pills total, 3 times per day. Take it between meals (at least 20 minutes before or after pills...or longer if you can). Now it does have a synergetic response with Vitamin C, although the current studies show you don't have to take much vitamin c with it to have a great effect...as low as 500mg is what I've seen (or less).
Maitake D-Fraction is not an antioxidant, it is a 'beta glucan' which works on the immune system (among other things) so there should be no issues unless you have an autoimmune system disorder. In-fact, studies elsewhere have shown it can enhance chemotherapy and reduce it's side effects.
For vitamin c (in general), that's an old issue....many oncologists are *still* under the mistaken impression that it's bad to take antioxidants based on an old story with no scientific basis. Of course, you should do what your physician states but here is some information on it:
http://www.alanpeto.com/ovarian_cancer/blogs/13/Meta-analysis-finds-antioxidant-supplementation-safe-during-cancer-therapy.html
If you have any other questions, please fell free to ask! I'm writing this post after just waking up :)
Alan
------------
Ovarian Cancer Research Website
http://cancer.alanpeto.com/
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