Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 207104 times)

Stepphers

  • New Member
  • *
  • Posts: 12
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #240 on: May 21, 2013, 05:08:47 pm »
Derek!  Thank you!  I am so happy for you! ;D

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #241 on: June 11, 2013, 02:42:40 pm »
I`m writing this down on our W+W forum but I`m sure it may be able to help all those with an AN treated or not in the future especially those with NF2`s.  Anyhow, I went to a great NYC meeting (6-8-13) with Dr. Roland from NYU giving his presentation. He went over alot and what amazed my most was him and NYU seeming to be on the forfront of working with technology to help AN`s with medicines. The 3 medicnes primarily in trails now were Bevacuzumab, Lapatinib,+Avistan. All I want to do is put this out there for everyones research keeping on top of our AN future. You can t thank Dr. Roland + crew for working so hard..... Best wishes, Mickey

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #242 on: June 11, 2013, 03:23:06 pm »

Thanks Mickey!

And don't forget Honopure (pure honokiol extract)... you don't need a prescription.  Here's link to a paper that discusses honokiol and ANs (aka Vestibular Schwanommas VS):

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

Excerpt:

CONCLUSIONS:

Honokiol, a low molecular weight natural product, inhibits cell proliferation and promotes apoptosis in schwannoma cells by targeting the ERK pathway. Our data suggest that honokiol can be evaluated as a chemotherapeutic agent for VS.

Sending you all shrinking vibes!
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Nannybee

  • Jr. Member
  • **
  • Posts: 98
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #243 on: June 11, 2013, 04:04:30 pm »
Thanks Mickey. I was offered to be a part of the Avastin trial, but after researching the horrible side effects, decided to go with radio surgery for the AN and conventional craniotomy for one of the meningiomas. (The others will stay put for now) Perhaps for those with NF2 who have more tumors, the risk/benefit ratio would be more acceptable. I am grateful for the research and those who are willing to take part in the clinical trials, and for you sharing the information!
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #244 on: June 11, 2013, 07:19:25 pm »
TY Lisa and Nannybee.... Honokiol! Everyone out there remember this one... Read the research that Lisa put out there.. I also have been using pine bark extract from Europe which got some good reports??? I`ll be taken my now 2 year mri soon. Feel good + got my fingers crossed.  Best Wishes, Mickey

Sheryl

  • Sr. Member
  • ****
  • Posts: 456
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #245 on: June 14, 2013, 12:28:19 am »
Lisa - great abstract - thanks for posting.  Are you taking Honopure.  Your shrinkage is impressive.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #246 on: June 14, 2013, 01:09:33 am »
Hey Cheryl! Yes I'm taking honopure.  Started taking it in January 2012 taking 2 capsules (with food very important).  Now I take 3 each night before bed.  Next MRI is in November.  I think the daily meditation with mantra is a big help too.  And... I have made it a point to reduce/avoid stress.  Stress is still around but I'm dealing with it differently.  I've been watching Gabor Mate on youtube.  He talks about stress and its impact on our health.  Here's a link to one of his talks: http://www.youtube.com/watch?v=Qf92l7FPyKo
« Last Edit: June 14, 2013, 01:11:10 am by LisaM »
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #247 on: June 20, 2013, 05:22:32 pm »
Hey Lisa! Just ordered another 120 bottle of honopure!  Cost alot but as they say you get what you pay for... Mickey

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #248 on: June 20, 2013, 07:03:30 pm »
Yes... honopure is pricey, but if you buy it by the case it gets a bit cheaper.  Hopefully in time the price will come down as honokiol extract becomes more available. 

I do think honopure is helping but the other things that Derek is doing, that started this thread; drinking plenty of water, eating a healthful diet, taking a rest/mediating each day, singing (or meditating with mantra) and regular exercise are working too.  Being happy, having people that you love in your life, doing things that you enjoy and keeping stress manageable, all these things are very important to those of us in the wait and watch brigade.

I am so thankful to have found this thread.  It gave me the courage to try waiting and watching.  And I'm still waitin and watchin!
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #249 on: June 24, 2013, 02:41:40 pm »
Well its that time again! Scheduled a MRI for Wed Jun 26. Its almost 2 years now and I`m trying something a little different. Its a stand up MRI (actually sit down) lol. No contrast... I`m trying to make it easy on myself. I`m feeling very good, and if there is nothing too much out of the ordinary I`ll do the same again in 2 years. Thinking positive and saying my prayers, Best wishes, Mickey (6 yrs W+W)

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #250 on: June 24, 2013, 03:01:55 pm »
Mickey ~

Best of luck on Wednesday!  :)

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.

Derek

  • Hero Member
  • *****
  • Posts: 553
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #251 on: June 24, 2013, 03:33:35 pm »
Best wishes for another positive result for you on Wednesday Mickey...you deserve it!  :)

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

LisaM

  • Full Member
  • ***
  • Posts: 177
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #252 on: June 25, 2013, 09:37:18 am »
Best wishes for good news on Wednesday!  And... for trying something different!
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #253 on: June 27, 2013, 07:37:36 am »
Thanks for your well wishes! I went for my MRI in the new stand up, sit down MRI machine.  Took about 35 minutes in a seated position with a open head frame adjusted to my head while watching the Yankee game on TV... lol. +no dye! Although it did make those crazy noises while your must sit still, a pleasant suprise! Well next I`ll call for my results next week and hope the pictures will come back clear enough and stable for my doctor... Feeling good and got my fingers crossed, Best wishes, Mickey

Derek

  • Hero Member
  • *****
  • Posts: 553
Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #254 on: June 29, 2013, 07:17:08 am »
Today, received some additional positive news which will be of interest and encouragement to fellow 'wait & watchers' and to those contemplating 'W & W' as a viable treatment option.

You may recall that my recent MRI scan indicated a further reduction in the size of the tumour at 11 years since diagnosis in 2002. I have just had some correspondence from my consultant who is monitoring my condition as a potential GK patient. Interestingly he states that the overall shrinkage of the AN has been particularly noticeable over the past 3 years (years 8 to 11) and considers this to be a "rare finding" and recommends that my annual MRI scans can now safely be increased to every 2 years. I value his professionalism and guidance and will carefully consider his advice.

This has reinforced my personal belief that my original decision to 'W & W' is vindicated whereby if there is no increase in tumour size and no escalation of symptoms, not to embark upon unnecessary medical intervention with attendant risks of morbidity. This together with maintaining a healthy diet and active lifestyle have been a successful strategy that I totally commend to others so diagnosed notwithstanding the usual caveat of regular MRI scans and acting upon the advice and guidance of a consultant in whom you have total trust.

Whilst acknowledging the consultant's comment that the shrinkage of my tumour is a "rare finding" I personally believe that this, in the main, is due to a relatively small percentage of those diagnosed with the condition opting for long term commitment to conservative management.

Regards

Derek



« Last Edit: June 29, 2013, 03:30:16 pm by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

 


anything