ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tumbleweed on November 14, 2011, 11:57:44 pm
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Hi, everyone:
I'm starting a survey to determine, if possible, an adjunct regimen for shrinking an AN after radiosurgery (GammaKnife) or radiotherapy (CyberKnife or fractionated stereotactic radiation).
Background: Immediately after diagnosis, I had tried a very comprehensive self-directed natural-healing program to shrink my AN. It failed miserably, as my AN continued to grow at an accelerated rate. After receiving CyberKnife (CK) treatments in July of 2008, I continued my program, which consisted of taking various supplements and maintaining a strict diet and exercise program. After initially swelling 33% in volume in the first five months after treatment, my AN began to shrink dramatically. Now at the 40-month mark post-CK, it is 71% smaller in volume than it was at the time of treatment (and 79% smaller than it was at its peak size at five months). Coincidence? Luck? Or did my health regimen have something to do with it? My theory is that while my regimen could not stop an AN from growing on its own, it helped my body eliminate the degraded tumor after it was irradiated and died. If other people have witnessed significant shrinkage of their tumor following their own health regimen, perhaps a common thread can be determined in the group's approach -- a common thread that could lead to a protocol others might also benefit from.
I'll begin:
First, I should say that I only took most of the supplements listed below for the first 3 years following CK (a shorter period for some of the supplements; I also tapered some dosages as I began to feel better). Fading memory will almost surely cause me to leave out some details. But here is what I remember:
For the first couple months following treatment, I took 450 mg of rhodiola rosea extract once or twice per day for fatigue.
For three years, I took either Wobenzym or Flavenzym (three times per day for the first two years, then reduced to twice per day for year three).
Wobenzym and Flavenzym are commercial preparations comprised of the exact same proportional blend of systemic enzymes (pancreatin, papain, bromelain, trypsin, chymotrypsin and rutosid).
At about the start of year three post-CK, I began taking an additional 500 mg of bromelain (one of the key ingredients in Flavenzym and the one that is confirmed in some scientific studies to shrink some tumors).
I also took 665 mg of curcumin (turmeric extract), initially three times per day and tapering to once per day 40 months out.
Other supplements I took included:
1,000 mg vitamin C daily.
400 mg vitamin E twice daily
Calcium/magnesium combo (usually 1000 mg calcium and 500 mg magnesium).
I occasionally took glucosamine (for maintaining healthy cartilage and athletic performance); I mention it here only because it could possibly turn out that the most unlikely supplement is the silver bullet for shrinking an AN.
Diet: My diet consisted mostly of baked salmon, steamed dark leafy green vegetables, fruit, nuts, legumes and whole grains. Salmon contains anti-inflammatory omega-3 fatty acids and high levels of the nerve nutrient pantothenic acid (vitamin B5). I avoided eating foods that cause inflammation: refined sugar, polyunsaturated vegetable oils (corn, sunflower, safflower, etc.), alcohol, coffee, etc.
I did a lot of aerobic exercise (250 to 400 miles of hiking and backpacking per year). Beginning at about 18 months post-CK, I also started doing 15 minutes of yoga five nights per week.
I meditated every night for 20 minutes from about month 28 to month 34 post-CK.
I tried to get at least 8 hours of sleep every night for the past 40 months. Fairly often, but not every night, I took valerian root extract and/or melatonin as a sleep aid. (Some research also indicates melatonin may boost the immune system.)
If I can think of anything else I did, I'll post an update. But now the ball is in your court. Did your tumor shrink following radiation treatments? How much (cite changes in volume, if possible)? And if so, what lifestyle habits did you pursue (diet, exercise, sleep, meditation, herbal supplements, vitamins, minerals, etc.) during that time? Try not to guess what helped; don't leave anything out. It's possible that a common thread could emerge that nobody could anticipate in advance, so please keep an open mind and detail as much as you can.
Best wishes to all,
TW
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P.S. Beware your taking the same high doses of these supplements I took, as they might sicken your stomach. For example, I know of some people who can't even take curcumin twice daily without suffering from cramping. This is a survey, not recommendations for others to follow. Again, the purpose here is to try to determine if there is a regimen that can reliably shrink an AN after it's been irradiated.
Best wishes,
TW
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TW
Short answer: Yes
My AN was "kissing" the brainstem at time of treatment. MRI at 4-1/2 yrs post-CK visibly shows a "gap" between my AN and the brainstem (ie: no longer "kissing" the brainstem). Although it has been medically noted that shrinkage can occur post-radio treatments on AN's, it is not "usual" but can occur.
Although different folks (ie: radiologist, radio-onc, neuro-onc, NS, etc) measure my AN slightly different (in their own methods), my AN is showing it went from 1cm x 7mm at time of CK to 7mm x 5mm at 4-1/2 yr post CK MRI.
TW, you know I luff you to bits (as my bloke would say) but we have to also note that the regimen you are noting has worked for you (and thrilled to hear this! :) ) but is not noted by the ANA. Just have to note this.
Phyl
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Thanks Tumbleweed for sharing your regimen. Even though I had surgery and not radiation I am interested to see how different regimens (even non-ANA noted) may impact ANs. I look forward to reading more experiences. Thanks!
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I also took 665 mg of curcumin (turmeric extract), initially three times per day and tapering to once per day 40 months out.
Other supplements I took included:
1,000 mg vitamin C daily.
400 mg vitamin E twice daily
Calcium/magnesium combo (usually 1000 mg calcium and 500 mg magnesium).
I occasionally took glucosamine (for maintaining healthy cartilage and athletic performance)
TW
To be more clear, I took the above supplements beginning from Day 1 after treatment, for three years. That wasn't totally clear the way I noted it initially.
Phyl, lest there be any confusion, I am not saying my regimen will work for anyone else and I'm not recommending anyone else follow it. This is only a survey. And yes, hopefully it could lead to insight into shrinking a tumor post-radiation. But that will only happen if other success stories are posted here and a common thread is found, which is my hope. You wouldn't happen to know the third dimension of your tumor at the time of CK and at present, would you? All three dimensions are needed in order to calculate volume changes. That said, it seems like your AN might've shrunk approximately on the same order as mine. Terrific!
Best wishes to all,
TW
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TW ~
Thanks for offering us your prospective on the benefits of your 'natural healing' program and the associated physical disciplines you engaged in that, in your view, may have had a part in accelerating your radiated tumor's shrinkage. It's definitely an interesting subject.
My debulked and radiated AN, at approximately 2.5 cm, did shrink, slightly, within 2 years of my surgery & FSR treatments Unfortunately, I never asked for precise measurements of the shrunken AN and just happily accepted the fact that it was shrinking as well as showing necrosis. My doctor was elated and so was I. I haven't undergone an MRI for three years and I'll probably wait until the five year mark before inquiring about having another, assuming no AN symptoms arise during that time. They haven't, as yet. I feel great . My last EKG was 'perfectly normal' and my BP and cholesterol readings are in an acceptable range. I consider myself to be relatively fit for my age (68).
I take vitamin C and D as well as Calcium Citrate tablets on a daily basis but beyond that, I've never gotten into supplements, diets or physical regimens. I eat whatever I want but in moderation and I avoid snacks. (My BMI is 22). I don't smoke or use alcohol but I drink a lot of coffee (with no ill effects). I don't have a formal physical exercise regimen but I'm active and don't spend too much time just sitting. I sleep well, about 7 hours nightly, and don't use any sleep aids. I don't meditate or practice yoga but I do practice my religious faith which includes prayer on a regular basis (usually for others - and to give thanks).
Frankly, I never assumed that my diet, vitamins or physical exercise had anything to do with my AN shrinking after surgery and radiation, but I could be wrong. I just don't know. That's why your query is worth answering and considering and why I'lll follow this thread with some interest.
Jim
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You wouldn't happen to know the third dimension of your tumor at the time of CK and at present, would you? All three dimensions are needed in order to calculate volume changes. That said, it seems like your AN might've shrunk approximately on the same order as mine. Terrific!
Hi TW :)
I believe 4mm...... 7mm x 5mm x 4mm..... I think that is it. Don't have my hands on my paper report in front of me at this minute but I believe it is it. When My radio-onc and I looked at the films last November and he brought up the comparisons (he also did the same for a recent ANA Support Group meeting at the CK Center at BI), everyone could see the visible shrinkage as well.
I know you are surveying. Just have to note, as one that Admin/Moderates this home-away-from-home, that the ANA is not noting the regimen you are surveying and I honestly would be tickled if what you share can also be noted by many many many others so that it could be note-worthy to bring to the ANA to see if a medical team could research and confirm if it was a medical option as an aid in the treatment for AN's. I, for one, would love that, versus AN'ers having to go through surgeries or radiation. I'm with you on this... and thrilled that you have felt better from it. Would love to prove it medically is acceptable as an option. We may be a far road from that but survey.... I'm with ya! :)
Phyl
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TW, thanks for starting this survey.
I am not a "radiation success" story, as my AN continued to grow (albeit very slowly) and eventually had to be removed. For what it's worth though, here is what I did after GK:
I took curcumin daily (couldn't tolerate more than 600 mg/day though, due to cramps). Also vitamins D, E, and fish oil.
I replaced much of my coffee intake with green tea (partially because I found that coffee made me dizzy). I do have a sweet tooth though, so I couldn't avoid the refined sugar ::)
I should note that my AN was on the upper limit for radiation, which lessens the probability of success.
Marianna
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Frankly, I never assumed that my diet, vitamins or physical exercise had anything to do with my AN shrinking after surgery and radiation, but I could be wrong. I just don't know. That's why your query is worth answering and considering and why I'lll follow this thread with some interest.
Jim
Yeah, I'm not sure it helped either, which is why I started this survey to see if anyone else has "mirrored" my results. It very well could be that my AN shrank because I have a fast metabolism or that something in my genetic makeup was key. How terrific it would be if even just a handful of people report their tumor shrank and they all took supplement 'x' after radiation.
I expect there will be no smoking gun. But I would be remiss if I didn't report on my results and try to figure out why it might've turned out so well.
Best wishes,
TW
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You wouldn't happen to know the third dimension of your tumor at the time of CK and at present, would you?
Hi TW :)
I believe 4mm...... 7mm x 5mm x 4mm.....
I honestly would be tickled if what you share can also be noted by many many many others so that it could be note-worthy to bring to the ANA to see if a medical team could research and confirm if it was a medical option as an aid in the treatment for AN's. I, for one, would love that, versus AN'ers having to go through surgeries or radiation.
Phyl
Hi, Phyl:
Were the dimensions you cited for your AN those that existed at the time of treatment or at present day? If at the time of treatment, what are the dimensions now? Knowing both sets of numbers, we could calculate the percentage drop in volume.
Regarding your second statement which I quoted above, I need to reiterate that I do not consider anything in my regimen as a substitute for treatment, and it certainly did not stop my tumor from growing. All I am saying is I suspect that it may be a helpful adjunct therapy following radiation. That is, I think it was a miserable failure without radiation, but it may be that it (or one sole aspect of it) was successful in shrinking an irradiated tumor. I would never suggest it could stop an untreated AN's growth.
One of the reasons that people choose surgery over radiation is that after radiation there is still a dead tumor inside their head. If a non-toxic protocol could be developed that has a high success rate of shrinking a tumor after radiation treatments (especially if it could shrink it completely), that would remove one deterrent surgery enlistees have toward receiving radiation (assuming they had the discipline to follow the protocol). Of course, another deterrent is discomfort with the idea of having one's brain irradiated, something which even people who elected to receive radiation share.
It will be interesting to see if my AN shrinks some more over the next year. It has already shrank more than the norm for 5 years time post-treatment (and 75% of CK patients see no significant shrinkage). I've read of only a couple cases of unexplained "spontaneous" disappearance of a tumor. I'm hoping (but not expecting) I'm going to join that small group of people. Yeah, I know, it's not likely. But my results have so far far-exceeded my expectations. I'm swingin' for the fences!
It's interesting to me that my AN took a year off from shrinking and then renewed its shrinking roughly concurrent with my taking extra bromelain. When I realized this a few days ago, I restarted taking bromelain and am now taking 500 mg once daily (on an empty stomach, which is the only way it helps for my intended purpose). I guess I'm making myself a guinea pig once again.
Best wishes to all,
TW
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I`m a firm believer in what your doing! I`m going into my 5th year now W+W and "stable". I`ve actually feel better than when first diognosed in all respects
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(GOT CUT OFF) and have to give credit to diet, supplements, exercise, prayer.. Best wishes, Mickey
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Hello All, I am nearly 1 year post CK, had an MRI, and received the results yesterday. The AN which had shown growth at a MRI 4 months ago has receded a bit! It was 2.7cm and is now 2.4 cm. When it was 2.7 I experienced extreme facial numbness on the AN side as well as just about banging into walls. My balance was so off and my wonkiness was awful. But I have noticed in these past 4 months since the last MRI and MD visit that all of the above has improved. My doctor explained that the goal of the CyberKnife is to stop the growth. He said the previous growth of the AN was probably due to the radiation causing a bit of swelling. Now that's not to say that it can't act up again so although I'm happy with the good news I'm treading lightly as it could cause the same problems. I do know that it will never go away but as long as it stays safe in my head then I'm ok. My doctor wants to see me in 6 months with a followup MRI. It's so important to stay in touch with the CK team which will no doubt be for years and years. Happy Thanksgiving to all, Joan
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Hi, Phyl:
Were the dimensions you cited for your AN those that existed at the time of treatment or at present day? If at the time of treatment, what are the dimensions now? Knowing both sets of numbers, we could calculate the percentage drop in volume.
Hi TW:
It was noted in my sig line:
at time of treatment: 1cm x 7mm x 4mm
4-1/2 yrs post-CK: 7mm x 5mm x 4mm
I am now 5-1/2 yrs post-CK so those dimensions were 1 yr ago (exact last Nov) so unknown as of today... not due for next MRI until next yr.
I'm thrilled with this survey and following along with what all are noting. My thoughts are that if your regimen helps the cause, I'd love for medical professionals for follow up on it to prove it as an option in helping the cause, even if you are doing this post-radio. It could be your metabolism as you have noted.
Thought/suggestion: Dr. Medbery is now on his RS Discussion Forum (they are still tweeking the site but he's there answering questions and they have an AN section)..... would be curious on his thoughts on this..... possibly pose it to him there to see his take on it (he is also consulting the RS team behind the scenes for answers as well as he recently did for mindyandy for a recent issue/question). Website: http://therss.org/ (http://therss.org/) , then at the top, choose link for "Patients." Would love to see what he says... if it is metabolism or the suppliments/diet or ? Curiosity.... you are more in tune to the question than me so maybe...... ;)
Phyl
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i am 16/12 after linac radiosurgery; and my tumour initially swelled and is now shrinking. i am not sure whether it is smaller than before treatment -but i will find out. i have not changed my diet/lifestyle on the back of my diagnosis or treatment - i try to eat a balanced healthy diet including meat and fish,(and a little too much chocolate...) and i don't think i probably get enough exercise although i am reasonably active.
i did have a course of steroids after treatment for a prolonged fever and tumour swelling.
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at time of treatment: 1cm x 7mm x 4mm
4-1/2 yrs post-CK: 7mm x 5mm x 4mm
Thought/suggestion: Dr. Medbery is now on his RS Discussion Forum (they are still tweeking the site but he's there answering questions and they have an AN section)..... would be curious on his thoughts on this.....
Phyl
Hi, Phyl:
Your tumor shrank 50% in volume (as of a year ago) since being treated! That's fantastic! Sooo... was there anything special you did diet-wise or otherwise over the last several years that might've caused your AN to shrink?
Could you please send a note to Dr. Medbery with a link to this thread? That would be the easiest way to include him.
Thanks,
TW
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50% shrinkage! Thats great. Congrats!
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Hi everyone,
I am not going to be much help about shrinking ANs since I'm only 19 DAYS post GK, but I would just like to say that my homeopathic doctor here in France strongly suggested that I take some food supplements (bromelain, spirulina, selenium, vitamin E, silica (not sure about the English word for 'silice') to help a) my body eliminate as much as possible the ill effects of the radiation and b) to act as natural anti inflammatory drugs. For sure no miracle in view but all this will definitely strengthen our system and help it fight whatever comes its way.
Cheers
Joey
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Hello. Thought I'd chime in. I am almost 4 years post CK (months shy). I don't have my measurements but I did just have my MRI and it shows stable. I did have some swelling post CK which is typical. Swelling did go back down. I don't believe it shrank but is stable. I will take stable. Shows darkening. I wish it did show shrinkage but I am happy with stable. I had my MRI early due to some TN symptoms I am having. Today is a good day....knock on wood. l
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... my homeopathic doctor here in France strongly suggested that I take some food supplements (bromelain, spirulina, selenium, vitamin E, silica (not sure about the English word for 'silice') to help a) my body eliminate as much as possible the ill effects of the radiation and b) to act as natural anti inflammatory drugs.
Hi, Joey:
Thanks for your post. I avoided taking spirulina for several months after getting CK exactly because it is thought to eliminate the ill effects of radiation. I wanted to make sure that the radiation had some time to kill the tumor before countering its effects. You might want to ask your homeopathic doctor if you should hold off on taking spirulina for several months for that reason.
I was happy to see that your homeopathic doctor recommended bromelain and vitamin E, as I included those supplements in my self-designed regimen.
Thanks for everyone else for your support for this survey. I hope it does some good.
Best wishes,
TW
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Hi TW,
Thank you very much for the info. I'll certainly bring the subject up next time I see him (tomorrow in fact) and I'll double check anyway.
It's good to know that some doctors do believe that food supplements can really help tone down the side effects of some necessary drugs or treatments and thus hasten the healing process.
I'll keep you posted.
Cheers
Joey
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Thanks TW. :) As noted, based on what multiple radio docs (my radio at BI, Dr Medbery, my NS, etc) have shared is that shrinkage can occur yet is not usual. We all need to keep that in mind. I'm not sure if it's a contributing factor but my CK treatment was 6Gy x 5 days for 30Gy total (for hearing preservation purpose, in which my hearing was saved..... same level today as it was at time of treatment)
As to do anything special for the shrinkage of mine... sorry to inform.... nothing. I got married 6 mos post CK, ate my way to "heavier" weight" ("usual" with marriage), went into "mental-pause," moved my apt, was laid off of job/started new job, kept eating fattening, lost another job/started new job, moved apt again, got in car accident and watched family members health decline, thus, eating more.
Nope, usual life for me. Wish I could say I did something different other than taking daily multivitamin.
Since this forum is "patient to patient" (ie: no medical professionals, etc), will note the RS forum for you all to post there. I've shared this link with Dr. Medbery if he wants to "lurk" at it but he cannot log on here (he is well aware of that). The question has been posed on his RS forums (http://patientforum.therss.org/yaf_postsm146_Shrinkage-of-AN-s-post-Radiation.aspx#post146 (http://patientforum.therss.org/yaf_postsm146_Shrinkage-of-AN-s-post-Radiation.aspx#post146)) so let's see what he notes.
Wellness wishes, all!
Phyl
at time of treatment: 1cm x 7mm x 4mm
4-1/2 yrs post-CK: 7mm x 5mm x 4mm
Thought/suggestion: Dr. Medbery is now on his RS Discussion Forum (they are still tweeking the site but he's there answering questions and they have an AN section)..... would be curious on his thoughts on this.....
Phyl
Hi, Phyl:
Your tumor shrank 50% in volume (as of a year ago) since being treated! That's fantastic! Sooo... was there anything special you did diet-wise or otherwise over the last several years that might've caused your AN to shrink?
Could you please send a note to Dr. Medbery with a link to this thread? That would be the easiest way to include him.
Thanks,
TW
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Hi Phyl, Sorry for your tough journey but look how far you've come and with such a great hubby! Our AN's are similiar as far as my hearing which I just had re-tested 2 weeks ago and it's just about the same as it was prior to CK. So I was pleased. Still have tinnitus which I understand will never ever go away-just have to deal with it. My tumor went from 2.3 to 2.4 to 2.7 and now the results of my recent MRI it is back to 2.4 and my CK MD is quite happy as the goal is always like you said...to stop the growth and remain the same. Have a wonderful turkey day. Now that's the day that it's ok to EAT!! Take care, best regards, JLR
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Hi, Phyl:
So it seems that so far there is no common thread that explains our ANs shrinking, unless it was something in the multi-vitamins you were taking that I also took. (That's not likely, as a lot of people take multis, yet exceedingly few see their tumors shrink). And we can probably also rule out metabolism as the key, since you and I seem to have very different metabolisms. (I can eat as much as I want and never gain more than a few pounds.) Hopefully someone else on the forum who has had shrinkage will participate here and a clearer picture will evolve.
Btw, 6 Gy x 5 doesn't equal 30 Gy. The "biologically equivalent" dose is much smaller (probably on the order of roughly 20 Gy). According to Dr. Chang, you can't simply multiply the two numbers (6 x 5) to arrive at the total dose you would have received had you gotten it all in one dose. But I digress...
Best wishes,
TW
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i have looked at my before and 14/12 after MRIs and they are the same size. so no shrinkage so far.
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Hi TW:
Point taken but was told 30Gy total which was done over 5 days (Mon-Friday). At the time, I had heard of 18-21Gy done over approx 3 days... when BI proposed 30Gy to me, in the hopes of helping to preserve my hearing... trust me..... I put them through the ringer on that, but after discussions, agreed to it. So, I can confirm I had 30 Gy... done over 5 days, so whatever it works out to be over 5 days... in the end, it worked for me. I now know of many that have had the same protocol done, esp. at BI.
Other than my multivitamin, lack of exercise (I'm physically challenged) and such...... I can't confirm exactly why mine has shrunk but refer back to my initial comment for what dr's have shared with me.... sometimes they do, sometimes they don't. To my knowledge, there hasn't been a correlation made that has it occur.
Phyl
P.S. JLR...... I'm eating with ya! :) I'm hanging tough, enjoying life, doing my best, hanging around here but living life! :) Hugglez to you! Wellness wishes continue! :)
Hi, Phyl:
So it seems that so far there is no common thread that explains our ANs shrinking, unless it was something in the multi-vitamins you were taking that I also took. (That's not likely, as a lot of people take multis, yet exceedingly few see their tumors shrink). And we can probably also rule out metabolism as the key, since you and I seem to have very different metabolisms. (I can eat as much as I want and never gain more than a few pounds.) Hopefully someone else on the forum who has had shrinkage will participate here and a clearer picture will evolve.
Btw, 6 Gy x 5 doesn't equal 30 Gy. The "biologically equivalent" dose is much smaller (probably on the order of roughly 20 Gy). According to Dr. Chang, you can't simply multiply the two numbers (6 x 5) to arrive at the total dose you would have received had you gotten it all in one dose. But I digress...
Best wishes,
TW
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There are at least two very good papers that have been written on what the AN does after radiation
I can only find one of them at the moment, the other one goes into more detail. If I find it I will post it.
The guts of these papers show there is a wide variety of reactions, and whether your tumour grows, shrinks or stays the same, enhances or doesn't, if it looks the same or has a patchy look, none of it is an indicator of success or failure within the first two years.
Only growth after 2 years is an indicator of treatment failure.
As to why some tumours shrink and others don't is still unknown.
Having a healthy lifestyle certainly cant hurt.
http://www.ajnr.org/content/29/5/906.full.pdf
I also found this the other day. Its a plant extract Honokiol.
Not sure on how it is taken or whether it is even ready for human consumption, but it looks like it shows some promise for the treatment of AN
http://onlinelibrary.wiley.com/doi/10.1002/lary.21781/full
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I also found this the other day. Its a plant extract Honokiol.
Not sure on how it is taken or whether it is even ready for human consumption, but it looks like it shows some promise for the treatment of AN
http://onlinelibrary.wiley.com/doi/10.1002/lary.21781/full
Paul,
Thanks for sharing this. I took a close look at it for what I could see... Article comes out of Seoul, Korea, with funding there. I'd be curious, from a USA standpoint, to see what the NIH would say regarding this as well. As I deal daily with Release Reviews of abstracts/articles/publications/presentations, once an article is published does not necessarily note it is a "done deal" in its study (as we have learned over the years... even when the FDA approves something.. then has to retract on it). But, this is quite interesting and I, for one (not being cynical) would like to see Stateside input on this... whether FDA, NIH, etc.
Thanks for sharing... definately an interesting read.
Phyl
=======================================================
Author Information
1Department of Otorhinolaryngology-Head and Neck Surgery, Soonchunhyang University College of Medicine, Bucheon, Korea
2Department of Otorhinolaryngology, Yonsei University College of Medicine, Seoul, Korea
3Laboratory of Chemical Biology and Genomics, Korea Research Institute of Bioscience and Biotechnology and University of Science and Technology, Daejeon, Korea
Email: Won-Sang Lee MD, PhD (wsleemd@yuhs.ac)
*Correspondence: Won-Sang Lee MD, PhD, Department of Otorhinolaryngology, Yonsei University College of Medicine, 134 Shinchon-dong, Seodaemun-gu, Seoul, 120-752, Korea
Publication History
Article first published online: 4 NOV 2011
Manuscript Accepted: 2 FEB 2011
Manuscript Revised: 29 JAN 2011
Manuscript Received: 15 DEC 2010
Funded by
National Research Foundation of Korea (NRF)
Ministry of Education, Science and Technology. Grant Number: (2010-0005392)
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I went to Pubmed and did a search on Honokiol.
I was quite surprised... 304 Papers on Honokiol.
It appears that it has been used traditionally in Chinese and Japanese Herbal medicine.
I also went to a chemical database which showed that it was a known VEGF inhibitor (anti cancer agent)
So it does have verified healing properties.
So looks like the use of Honokiol for the treatment of Acoustic Neuroma needs further investigation.
Please note everyone, that while Honokiol may offer some benefits for AN's.
Just because its natural does not mean its safe.
Cocaine, Opium, Pyrethrin (fly spray) are all natural too.
Just an idea.
This seems like a great research project for someone.
I wonder if we can encourage a University, or Hospital to take up the challenge...
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Found the Pubmed link to Honokiol and AN.
http://www.ncbi.nlm.nih.gov/pubmed/22057812
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Thanks for the links to info on honokiol, Paul. I haven't had a chance to read up in depth yet, but one thing that caught my eye is that honokiol is anti-angiogenesis. By inhibiting VEGF, it prevents new blood cells from developing in the tumor. Without new blood supply, the tumor can't grow or eliminate waste, and it dies.
That's the theory, at least. But I should note that I tried taking large doses of several anti-angiogenesis supplements (Wobenzym -- AKA Flavenzym -- bromelain, curcumin, resveratrol, and more; at least one of these was specifically a VEGF inhibitor) when I was first diagnosed. I took them concurrently prior to getting CK, hoping to avoid treatment, and instead of halting or slowing my tumor's growth, it grew at 5x the average rate over a five-month period. That's what impelled me to seek CyberKnife treatment.
So I've got to say that I'm dubious. What works for controlling cancerous tumors doesn't necessarily work for controlling ANs, which are benign and very similar to healthy tissue.
Please don't get me wrong: I always appreciate it when someone posts links to new research concerning the control of ANs. But I've done the VEGF-inhibitor routine before and found it entirely ineffective for control of my AN. But maybe honokiol is different...
Sincerely,
TW
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By inhibiting VEGF, it prevents new blood cells from developing in the tumor.
TW
I meant to say "new blood vessels."
Best,
TW
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I found the link to the paper showing what happens to tumour size after Gamma Knife.
Its an interesting read, and shows a large variation in how the AN reacts
http://www.ajnr.org/content/21/8/1540.full
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Just a quick add to this interesting thread. The pubmed paper on Honokiol concludes that it inhibits growth and promotes shrinkage in schwannoma cells by targeting the ERK pathway. So its not based on its anti-angiogenesis effect.
chris
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What would the equivalent dose of Honokiol be for a 75kg human? On the paper it says dose was 7mg/mL(IC(50). What on earth does that mean?
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I am not a pharmacist nor a doctor.
I believe it means you need 7mg of honokiol per litre of blood plasma, to achieve 50% of the maximum therapeutic dose.
So if it is injected intravenously you will probably need about 14mg. presuming you have about 2 litres of plasma in your blood.
If you swallow it who knows how much actually gets into your blood.
Could be nearly all of it, or nearly none of it. Depends on how your body processes the substance.
There is no hint as to how it should be administered, nor long term affects.
Interupting processes could be bad for AN's and bad for you too..
I am sure injecting Jet Fuel into your blood will probably stop your AN from growing too.
There really is not enough information to safely attempt the use of this substance from the paper provided.
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Folks
Not to be a buster here, but we are beginning to go off-topic (topic being: Did your AN shrink after radiation treatment?). Can we please get back on track to the topic? Suggestion would be to continue this topic in a new thread. Also, for all newbies on this forum, this current discussion has not been noted by the ANA as a treatment option for AN's and recommends that all those seeking treatment options do so with an experienced AN treating physician/facility/option.
Thanks.
Phyl
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Noted. Thank you ;)
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Thanks, Phyl. While I appreciate all of the posts (the ones about honokiol are especially interesting), this thread is supposed to be a survey. My goal was to present, in very compact form, an overview of regimens that people used to shrink their tumors post-radiation. Compact so that people could quickly peruse the entire thread and recognize any potential commonality among protocols. The thread is definitely getting watered down by off-topic posts (we're on page 3 and only one other person has reported their tumor shrank). So thanks again, Phyl, for reeling it back in.
(I do appreciate everyone who expressed support for my endeavor.)
Best wishes,
TW
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TW:
Agree. Thinking the Honokiol discussion can be done in a different thread as that is new research that has just emerged but still warrants further medical research, I agree with you about a compact location for those seeking to find out if there is a commonality for post-radiation shrinkage. Although we have not determined this to exist (and Dr. Medbery is noting the same on the RS forum as well), this survey does help to present that although it can occur, although not to be expected, it is interesting to see if one's lifestyle choices do/can contribute to the shrinkage of post-radio AN's. As it stands right now (based on inputs here), not seeing it...... but the survey is definately worth it, so I thank you! :)
Phyl
Thanks, Phyl. While I appreciate all of the posts (the ones about honokiol are especially interesting), this thread is supposed to be a survey. My goal was to present, in very compact form, an overview of regimens that people used to shrink their tumors post-radiation. Compact so that people could quickly peruse the entire thread and recognize any potential commonality among protocols. The thread is definitely getting watered down by off-topic posts (we're on page 3 and only one other person has reported their tumor shrank). So thanks again, Phyl, for reeling it back in.
(I do appreciate everyone who expressed support for my endeavor.)
Best wishes,
TW
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Like you, Phyl, I'm thinking it's not likely a common cause for shrinkage will be found. But if it can, this is one of the most likely places for it to happen. Where else is there access to thousands of AN patients at once? If a reliable protocol for shrinkage exists, this is one of the most likely places to find out about it.
Of course, the problem is that dramatic shrinkage happens so very rarely that the few people who have had this happen must see this thread and choose to respond to it in order to get any useful data at all. And the data are likely to be so few as to render a firm conclusion unlikely.
But it's worth a shot. It's much easier than mailing out survey forms to thousands of AN patients (assuming you knew their contact info and they opted in to participate). And any results are immediately accessible here to all interested parties.
So hopefully more people who have had their AN shrink will come forward and participate in this survey. Assuming there are more people and they're on this forum.
Best wishes to all,
TW
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I just did a search in this forum on the word "shrink" and quickly perused the most promising results. I found three other people on this forum who have had their tumors shrink:
JimC -25%
Mark -20%
...and the grand prize winner: KathyG -95%
In Kathy's case, her tumor had been filled with a lot of fluid prior to treatment. When the tumor stopped producing fluid following radiation, it collapsed.
This makes me wonder whether Phyl and I also had tumors that had higher fluid content. It may be that those of us who had the highest percentage shrinkage simply had tumors that initially had more fluid in them compared to the average AN. This relates to the question of vascularity (prominence of blood vessels in the tumor) posed by someone earlier in this thread.
Best wishes,
TW
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Interesting stats and theory, TW. :) I've never inquired specific to my AN re: fluid content as for me (and me alone), just wanted the thing zapped and done... and now, pushing 6 yrs later..... zapped and done. Now, I know that is not the case for many (as I can only speak to my own experience), I could inquire to my radio-onc re: the fluid content (in his opinion) yet, I've also learned that one that has radiation performed on their AN may never know since we have not had it surgically removed for a biopsy to be performed to definatively define the makeup of our particular AN. We know many, pre surgery, were told they had AN's but once in surgery, were determined to have different growths, so in my case and as it pertains to my post-radio shrinkage, not sure if trying to find out if my AN's fluid content is possible since no biopsy was performed on it to make this determination.
I had coffee... sorry.
Phyl
(P.S. Just saw Dr. Medbery's updated response on the RS forum.... see below. He was responding to my comment/question that shrinkage may occur but not expected and known reason:)
Buddy Medbery
#6 Posted :a day ago
Rank: Administration
Groups: Administrators
Joined: 10/28/2011(UTC)
Posts: 47
Location: Oklahoma City, OK
I think that is a fair statement. If you look at the graph, you that a lot of the tumors actually do shrink in volume, and I must say that I have never formally analyzed our results in that regard.
There are a couple of things that make that series a little unusual:
1. THeir control rate was lower than most people get, which may be in part because
2. They treated tumors up to 4 cm in size, which most of us don't do routinely, and
3. doses were as low as 10 Gy, with the lower doses in the larger tumors
SO I think the trends in size are interesting, but I would be reluctant to take much more from this
Clinton A. Medbery III
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
(405) 272-7311
buddy@swrads.org
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Hi Guys!
Thanks for this thread and this discussion. I think it's most interesting and will prove very useful once you get more data. I was also thinking of starting a thread collecting statistics regarding symptoms before and after GK or CK for people like me who have had the treatment recently (one month tomorrow). What do you think? Of course we're not doctors but I think our experience can create an enormous data base that might one day help doctors make some kind of unexpected connections between An shrinkage/symptoms and age, alternative medicine, diet, food supplements, the texture of the AN, medical history etc etc. Maybe I can think of some kind of quick and short questionnaire that people could fill in and the, who knows, some interesting statistics may come up...... ;)
Let me now if you think it would be a waste of time.
Cheers,
Joey
P.S. TW, I asked my homeopathic doctor about taking spirulina and he said that I was taking such small doses of it that it couldn't possibly counteract the positive effects of radiation but that in the long run it was helping my body fight the side effects of the treatment.
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Phyl, I doubt your doctor would be able to discern the past fluid content of your tumor without a biopsy. In KathyG's case, it was probably surmised on a cause-and-effect basis that it had been filled with fluid; that is, the only explanation for such dramatic shrinkage was that it was previously fluid-filled. But I could be wrong, so fire away!
Joey, I remember seeing a survey of pre- and post-treatment symptoms about 6 to 12 months ago in this forum. Responses were all over the map, but the majority of people reported seeing their symptoms/side effects improve within 6 to 14 months after treatment, if I remember correctly. You might want to do a search for that thread to see if it's still active, before starting a duplicate one. If it can't be found anymore, I think it would be a good thread for newly diagnosed and recently treated forumites to read. A helpful guidepost, if you will.
Sincerely,
TW
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One other thought came to mind as I was out walking earlier today: It may be that ANs shrink for different reasons in different people. KathyG's shrank because it was filled with fluid. Maybe mine shrank because of some of the supplements I took, my diet, some unknown reason, or all three reasons. And Phyl's may have shrunk because of some genetic disposition or something in her drinking water. So, it's possible (make that likely) that no common cause will be found in this survey, but providing relevant information may yet be helpful to someone else on this forum and provide the basis for future understanding.
Best wishes,
TW
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well, a true tossed salad (I kept it healthy, TW! :) ) going on here as potential reasons why. TW, suggestion is for you to join in Dr. Medbery's discussion with link I shared earlier so you can share direct with him. Here is his last response when I noted "fluid filled" growths to him. Please log on there direct to help save time/energy and you can ask him direct...... he's been real terrific in responding his thoughts.
Phyl
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#8 Posted :about 20 hours ago
Rank: Administration
Groups: Administrators
Joined: 10/28/2011
Posts: 52
Location: Oklahoma City, OK
I don't think fluid content per se matters, but I DO think that having a cystic component makes a difference. In some series, cystic tumors having a faster growth rate and higher risk of facial nerve problems. It is not clear whether they shrink the same as solid tumors, with at least one series showing they shrink faster. I think they tend to be a little more unpredictable. However, it must be remembered that they may have a worse outcome with surgery because of facial nerve involvement, so that is not necessarily a better answer. Sometimes it might be in a very symptomatic patient with a rapidly growing cyst
Clinton A. Medbery III
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
(405) 272-7311
buddy@swrads.org
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When I was treated I asked about Tumour swelling.
The reponse I got was, as the tumour cells begin to lose control of the cellular processes with in it, The tumour cells lose their ability to control water being absorbed/released into the cell (homeostasis).
As a result the tumour swells, not because the cells are multiplying, but because the individual cells are becoming bigger and absorbing water. As to why some tumours swell more than others?
Maybe we could go on a hunt around for information relating to what happens to cells post radiation..
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Just found this thread... I read somewhere that cystic ANs grow more quickly than other ANs (meaning the ones that aren't cystic) and cysts have fluid in them. TW was your AN cystic?
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BTW... if anyone is interested in discussing Honokiol please join this thread:
http://www.anausa.org/smf/index.php?topic=16209.msg979736022#msg979736022
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I read almost this topic and really wonder if there are somethings wrong in my case.
I was diagnosed with right AN 25 months ago (my tumor's volume is 757,38 mm3) and be treated with CK (1800/2307.89 cGy; Collimator 03 mm). Three months later I visited the CK centre to take MRI test and my doctor told me there were no sign of the tumor (at that time all my symptoms improved after treatment). My one year MRI test and second year MRI test gave me the same results (It is all black in right side). But now, after 2 years, although my MRI show nothing, some symptoms comeback and I loss hearing!
Should I wonder about the accuracy of MRI tests (1.5 tesla)?
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TW was your AN cystic?
No, or at least this was never mentioned as a possibility by any of my doctors.
Best,
TW
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I read almost this topic and really wonder if there are somethings wrong in my case.
My one year MRI test and second year MRI test gave me the same results (It is all black in right side). But now, after 2 years, although my MRI show nothing, some symptoms comeback and I loss hearing!
Should I wonder about the accuracy of MRI tests (1.5 tesla)?
Minh, I think you should trust the MRI is accurate. It is common for AN patients to have symptoms long after their tumor has died. The cranial nerves which the AN damaged are, unfortunately, damaged for good. They are your body's weak areas now. So when your health is not 100%, those nerves are going to act up. It probably has nothing to do with the tumor. Your tumor, according to your MRIs and doctors, is gone baby gone. Rejoice in that!
Best wishes,
TW
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Thanks Tb. You are right. I should try to improve my health (the way you and Lisa sharing) and the best thing I could do now may be waiting it overcome.
Best wish all of you.