Survey: Did your AN shrink after radiation treatment?

[Tumbleweed]

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

[New girl]

50% shrinkage!  Thats great.  Congrats!

[frenchjoey]

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

[mindyandy]

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

[Tumbleweed]

... 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

[frenchjoey]

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

[ppearl214]

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) 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

[JLR]

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

[Tumbleweed]

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

[mattsmum]

i have looked at my before and 14/12 after MRIs and they are the same size. so no shrinkage so far.

[ppearl214]

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

[PaulW]

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

[ppearl214]

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)

[PaulW]

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...

[PaulW]

Found the Pubmed link to Honokiol and AN.

http://www.ncbi.nlm.nih.gov/pubmed/22057812