ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: MG on June 04, 2016, 11:00:00 am
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Hi Everyone,
My time has come to an end with W&W. I have been fitted for my Cyber Knife mask and am waiting for them to set a date. I was told that I will not feel any better then I do right now and I may feel worse in the coming months. ::) I am trying to stay positive but it is hard sometimes. I will post again soon.
I hope all of you Watch & Waiters are hanging in there. Wish I could of hung on awhile longer but my tumor has touched my brain stem so here I go!
Take care,
MG
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Sorry to hear this. :( Best of luck with everything and let us know how it goes, will you?
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Hi Cathy...
I am sure that you have made a decision that is right for you in your particular circumstances and that you can look forward to a positive outcome.
Very Best Regards
Derek
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Hi Derek ,
I am also in wait and watch category for now , i saw your AN self reduced , I am curious to know did you anything special.
Thanksd
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Hi, MG:
You are wise to get treated, now that your tumor is touching your brain stem. CK is a fantastic choice for treatment.
Contrary to what you were told, it is entirely possible that you will eventually -- emphasis on the word eventually -- feel better after getting CK, although it may take a year or longer until you do. If your tumor shrinks as a result of the radiation treatments , it can possibly take pressure off the affected cranial nerves and brain stem and reduce your symptoms. (If my memory serves me correctly, Dr. Chang of Stanford told me that about 25% of his CK patients see "gratifying shrinkage" over the course of several years after treatment.)
This fortunately happened to me. Since getting CK in 2008, my balance has improved 90% and my tinnitus is about 90% lower in subjective volume on the vast majority of days.
For sure, I had atypically fantastic results. But it proves that quality of life can improve after CK treatments. You may feel worse for awhile -- a dying AN can exacerbate symptoms and make you feel miserable for awhile -- but eventually you may find that you're feeling significantly better than before you were treated. The best advice I can give is for you to be as healthy in your habits and lifestyle as you possibly can be -- it makes a big difference. As Dr. Chang once explained to me, the damaged vestibular nerve is your Achilles Heel. It is the first thing to act up when your general health goes downhill. So, by being vigorously healthy, you keep that weak nerve functioning the best it can.
Specifically: do aerobic exercise (besides the cardiovascular benefits, this also improves your balance), stay hydrated, get plenty of sleep and avoid refined sugar like the plague. (Sugar feeds brain tumors and is poison for the entire body.)
You will feel better before long!
Best wishes,
TW
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Wishing you the very best through the treatment phase. Keep us updated!
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(quote)
Specifically: do aerobic exercise (besides the cardiovascular benefits, this also improves your balance), stay hydrated, get plenty of sleep and avoid refined sugar like the plague. (Sugar feeds brain tumors and is poison for the entire body.)
Hi 'Tumbleweed'
Excellent advice particularly the reference to avoiding refined sugar which I have previously raised on this forum and unfortunately received disappointing responses as to the credibility of the advice.
Regards
Derek
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Hi Derek ,
I am also in wait and watch category for now , i saw your AN self reduced , I am curious to know did you anything special.
Thanksd
Hi there 'Bee'...
I have sent you a PM
Regards
Derek
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Thank you all for your well wishes. :) I will post updates.
Thank you Tumbleweed for the positive post. That made me feel better about CK. I have a treadmill that I will exercise as much as I can. Sugar is my downfall but I have cut way back on sweets since I discovered I had this tumor three years ago. No cookies or ice cream allowed in my house!! :D I will try hard Derek!
Thanks again Everyone,
MG
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I am stepping in to note that we have Not heard of evidence of sugar feeding brain tumors. I will reach out to the ANA Medical Advisory Board to see if they know of any evidence to the contrary.
Allison Feldman
CEO, ANA
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Hey thank you Allison this would be really interesting for us to know as I sit here buzzing away.
Personally, I think stress does it (forgot when I got my MD or PHd but I swear stress does everything).
Will say a prayer for you MG that all goes well.
Signed - another member of the AN club that no one wants to be in.
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Take care and best of luck! RE: nutrition advice -You might want to consider researching about eating foods that prevent inflammation. Maybe that could be helpful. Anyway, sending you positive thoughts!
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Thanks everyone!
I will look into the foods that cause inflammation Keep Smiling. :)
MG
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Two points about sugar:
1. Sugar causes inflammation. Tumors are known to form as a result of inflammatory responses.
2. In order to locate a suspected tumor in the body, doctors will put a radioactive isotope on a sugar cube for the patient to ingest -- knowing full well that the sugar will concentrate in the tumor and the radioactive isotope will then show its location.
Sugar does feed tumors. Sugar does cause inflammation. And even if you don't believe that, consider how bad sugar is for your body in general. It's broadly recognized now that sugar is poison to the body. Your overall health affects everything. Give your body a fighting chance and cut out the sugar, or at least reduce its consumption as much as you can.
I'm only saying this to try to help.
My two cents,
TW
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Best of luck MG!
I had Gamma Knife treatment in Sept. 2013. My first year post treatment was a bit of a roller coaster ride with all sorts of symptoms coming and going. My balance was probably my biggest issue along with some ocular motor problems. The good news is that my second year post treatment saw a huge improvement with most of my symptoms subsiding. I'm coming up to year 3 this Sept. and couldn't be happier with my choice of treatment and the outcome to date. Be patient with yourself, recovery after radiation takes time.
Cathie