Author Topic: Survey: Did your AN shrink after radiation treatment?  (Read 26142 times)

Tumbleweed

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Survey: Did your AN shrink after radiation treatment?
« on: November 14, 2011, 11:57:44 pm »
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
« Last Edit: November 15, 2011, 12:08:15 am by Tumbleweed »
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Survey: Did your AN shrink after radiation treratment?
« Reply #1 on: November 15, 2011, 12:05:50 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #2 on: November 15, 2011, 05:59:03 am »
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
« Last Edit: November 15, 2011, 06:01:04 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

New girl

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #3 on: November 15, 2011, 08:27:04 am »
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!
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Tumbleweed

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #4 on: November 15, 2011, 01:19:06 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Jim Scott

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #5 on: November 15, 2011, 03:45:20 pm »
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        
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #6 on: November 16, 2011, 05:41:23 am »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mk

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #7 on: November 16, 2011, 11:27:45 am »
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
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Tumbleweed

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #8 on: November 16, 2011, 06:15:34 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #9 on: November 16, 2011, 06:39:09 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Mickey

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #10 on: November 16, 2011, 11:01:23 pm »
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

Mickey

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #11 on: November 16, 2011, 11:05:20 pm »
(GOT CUT OFF) and have to give credit to diet, supplements, exercise, prayer.. Best wishes, Mickey

JLR

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #12 on: November 17, 2011, 04:20:35 am »
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

ppearl214

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #13 on: November 17, 2011, 05:59:51 am »
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/ , 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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mattsmum

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Re: Survey: Did your AN shrink after radiation treatment?
« Reply #14 on: November 17, 2011, 11:15:07 am »
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.
LINAC radiosurgery july 2011 for 1.5cm tumour (uk)