Five Year Wait and Watcher

[bob.e]

Just checking in.  Had my yearly MRI recently and got results yesterday.  No growth and no symtoms that I can tell.  I was diagnosed in Dec 1999 when checking for cause of migraines.  Two part schwannoma with one part .8 cm and the other oblong at about 1.2 cm.  Initially visited surgeons, FSR facility (Johns-Hopkins), IMRT (San Antonio) and local gamma knife center.  Finally decided to wait and watch.  So far so good.  Based on what I have learned I would probably go with IMRT, either the Novalis machine or Nomos system.  They seem the best for resolution, shaping and fractionation.  Oh, and the headaches are gone.  I lost some weight, started getting regular excercise and quit absolutely all caffeine (that was key).

Man this site has changed alot.  I kinda liked it before when you could just scroll through the messages.

Best regards to all.

Bob

[Sheryl]

Bob - that's great on your wait and watch.  I'm going the same route (as of now).  My recent MRI at the 3-1/2 year point was unchanged for the past two years.  Previously it was found at 9 mm and then was measured at 12 mm, but I was told that some of it could have been due to technical differences (different technician, different machine) and it was also thought that the very first one had been "under-read".  Anyway, I was given a one-year reprieve unless any symptoms develop.  Having been through breast cancer recently and my husband having another type of benign tumor removed (meningioma), I will probably opt for radiation if and when anything is needed.
Sheryl

[bob.e]

I wish you and your husband well.  You certainly do need a break.  I am grateful that I've been spared problems up to this point.  One thing I have done since the beginning is buy a personal copy of my MRI films each time.  Then I read them at home. One time I actually found a mistake in the measurement.  The doctor showed me how the tumor had increased in size versus the previous film.  Well I viewed my films at home and found the the magification factor (usually listed in the corner) was different!  He was doing a one to one comparison (with a pencil and paper) when there was not a one to one correlation.  I got out my calculator and dividers and found no change.  That was 3 years ago.

After reading about the anti-angiogenesis properties of EGCG I have been taking decaf green tea supplements and drinking it regularly for over 4 years.  May or may not be a factor but it is supposed to be a good thing in general.

Good luck to all.

[Sheryl]

Bob - what is EGCG?  I drink tea quite often and have heard a lot about the good effects of green tea.  Do you buy it loose or just use tea bags?  Now that things are calmed down for both hubby and I on other medical issues, we will start our daily walks, but it may be difficult for me to stop that one cup of java in the a.m.
Keep up the good work,
Sheryl
p.s.  This site takes awhile to get used to but I am so happy that the spam e-mail has stopped from Nigeria and Prince whoever he was!!

[bob.e]

EGCG - epigallocatechin gallate  If you do a search with Yahoo or Google you will find all sorts of stuff about it.  The best way to research EGCG is to look only at websites at major medical institutions (e.g. Johns-Hopkins etc.) or universities which will have .edu in the web address.  The sites that sell supplements and herbs will hype just about anything.  You can see one study at http://carcin.oupjournals.org/cgi/content/full/21/1/63 but there are plenty more.

I read tons about the stuff during my first year of wait and watch.  My conclusion was that it may indeed help, but also it can't hurt.  In addition to other useful purposes EGCG is an antiangeogenesis compound which means that it inhibits the growth of new blood supplies to tumors.  When a tumor starts to form the cells send out signals to bring blood supplies closer to the area to further promote growth.  If the signals are stopped or slowed the tumor growth, in theory, should stop or slow also.  Well, there are many attempts currently to product drugs to do just this, but there is also evidence that EGCG already has this property, at least to some extent. 

Most of what you read will reference the effects on cancer, but keep in mind that benign tumors also need additional blood supply to grow.  That fact combined with the other positive effects of green tea (the source of EGCG) made my mind up.  Now I drink several cups of green tea (decaf) a day and take decaf green tea supplements.

I stopped coffee and caffeine cold turkey.  I had a headache for about a week but that slowly went away.  Only allowed myself to take asprin during that time so as to avoid the caffeine in things like Excedrin.  The slowly cutting back routine never quite worked out as I could always justify the coffee because I hadn't slept good or had a meeting or needed to be more creative, etc.  I haven't had caffeine for 5 months now and it is great!  I sleep all through the night (haven't done that in years) and wake up rested.  The typical after lunch sluggishness is completely gone and my energy level is even all day.  Best of all the migraines that took so much of my time are gone!  Honestly I was at a point where I was taking an Excedrin at bedtime just so I wouldn't wake up with a headache.  That's when it hit me that I needed to change things.  I'll probably always stay away from caffeine in all it's forms.  I had no idea how it was effecting my quality of life.

It is also worth noting that caffeine inhibits the uptake of some important minerals including calcium!

Well I've rambled enough for now and I hope it makes some sense.  Good to hear from you and I wish you and yours all the best.  Good luck everyone.

[Karla]

I was wondering, are ya stating, that caffine can affect an acoustic neuroma?  Karla

[bob.e]

No I don't think there is any connection between caffeine and AN.  But, for me there was a definite connection to headaches.  I might not have been clear on that.  Quiting caffeine for me improved my quality of life so much that I mentioned it only for that purpose.  For many years I had frequent migraines and eventually starting taking Zomig which is very expensive.  It worked great but it was becoming a routine that I thought was unhealthy.  Finally I quit all caffeine.  I sleep great (better than I have in years), no headaches, and my energy level stays even all day.  Decaf green tea seems a good alternative and may have beneficial effects.  Hope that clears things up.  Good luck to you!

[Karla]

I know for a fact that there is not a connection to caffine with AN's.  I have a 2.5cm against my brain stem...zero headaches.  And, I drink tea with caffine every morning....Karla

[bob.e]

I probably hit the caffeine issue too hard.  Sorry if I implied a connection to AN, didn't mean to.  I usually only post once a year, went a little overboard with this one.  I'll leave my personal lifestyle stuff out of next year's post.

Good luck, Bob

[Karla]

Bob, no need to be sorry!!  I had an off day, I didn't mean to come across so stern.  I called my doctor just to make sure my morning tea was not hindering any of the great work he has done.  It doesn't.  Take care Bob!!!!  Karla

[bob.e]

Diagnosed Dec '99.  Two part AN or 9th crainial schwannoma.  Doing great with no growth, no treatment, no problems.

I know that wait and watch isn't good for everyone and has certain risks.  Just posting this for general info.  Good luck everyone!

[Battyp]

Karla I'm jealous I had horrible migraines with my tumor was was involving the brain stem...decadron was my friend and enemy!

Bob, how do you take your green tea?  I used to drink it hot in the am but stopped def. need to find some decaf stuff

Glad you're doing well!

[Heather010]

Good Morning .....I am also watching and waiting, Had my yearly MRI last Friday and got the results yesterday, not change in 10yrs...only sympton loss of hearing in right ear otherwise none...Just thought I would share my wait and watch with you all...

Heather

[bob.e]

Well, seven years have come and gone since my finding.  No treatments, no problems.  Just checking in.  Good luck to everyone!

[ppearl214]

Well, seven years have come and gone since my finding.  No treatments, no problems.  Just checking in.  Good luck to everyone!

Bob, Congrats! GREAT news!

Phyl