THE YELLOW FLAG

[skipg]

Proton has been around since the Manhattan project and was first used in 1962. Loma Linda is a pioneer in this treatment as is MGH in Boston. The Proton radio surgery is not as effective as Gamma or Fractionated but move down to Proton Therapy and the results improve dramatically. I have heard and read many different opinions concerning all available options. Protons are being used in prostrate cancer patients where there is no room for error without affecting other functions. I have talked to patients who swear by this type of treatment. The same for other AN patients. There is much debate due to the cost of treatment, but the effectiveness seems to be without question. If I go this route I will document the treatment for all to read.

[JWW]

My husband was diagnosed with early stage prostate cancer this past March, the same time I was diagnosed with my AN. He was at one time considering Proton therapy.....no longer. I saw two radiation oncologist, two neurosurgeons....every one said, "DO NOT consider proton therapy", esp., for prostate cancer. Same with the radiation nurses who hear thru the grapevine:
M.D. Anderson is reporting side effect from proton therapy in prostate cancer: 1. ALOT of hip replacement on the side the proton therapy was done, 2. burns in the intestine where the beams hit, leading to fecal incontinence. (my husband went with me to each of my consults and we both picked the doctors brains.)

Do what you feel is right for you. Your mind is made up. Good luck!

JW

[skipg]

It is amazing the number of differing opinions that we encounter. It truly adds to the confusion we have to deal with in selecting treatment for our AN. Could it be the expertise of the operators? I was told by Stanford that the machines are the same (referring to CK) and that the person operating is the key. Dr Scott Solsky from Stanford told us that he could go to another CK machine and achieve the same results that Staford was getting. He stressed experience and more experience. I will bring up the concerns before finalizing proton treatment. Thanks for the input and I hope you and your husband are doing well.
Skip

[ChipsFL]

Skip,

Remember due dillegence includes researching all your options and then deciding which is best for you based on all options. Since I don't know what Proton therapy entails , you have an advantage over me. My question is this:

 Does receiving Proton therapy preclude you from receiving Gamma Knife or Cyber Knife?
 If you want to do a little more research on Proton therapy then you should obtain  the  ANA Conference in Cincinatti in 2011. I have downloaded it and it is on my ipad. Also, I don't want to worry you but there is a reason that neurosurgeons prefer to operate first. then if it grows radiate. That information is also on the CD. You may obtain it by calling the ANA offices in Georgia.

Mike

   Not the case with mine. He does both and had no problem with CK first in my case.

[ChipsFL]

The neurosurgeon I saw that diagnosed my AN is NOT a believer in Proton therapy. He also, has a Ph.D in physics and said "there is not enough information and studies out there regarding proton therapy to control where it stops.....thus an explosion where ever it ends."

One brilliant doctor's opinion. He also said, "the doctors that push proton therapy have to pay for their machine!"

JW

I noticed the following post in the post op section.
Ear Pain
« on: August 02, 2012, 02:45:29 PM »QuoteHere's one that I haven't read much about.  I am 3 months post Proton therapy and have been getting ear pain on the tumor side.  I was not expecting that!  Started out as twinges of mild pain which came and went in a moment.  Not too big a deal.  Then it got worse -- repeated twinges of pain over longer periods of time.  Still not unbearable, but very annoying.  I called my doctor and once we ruled out some kind of ear infection, she said it was probably from tumor inflammation.  She prescribed a very low dose steriod and it has almost completely gone away.  The only time I get any pain is in the morning when the previous steriod dose is on its last legs.  So, this is so far a good news story, but I figured I'd post the experience since someone else might experience similar symptoms and wonder what to do....

[MDemisay]

Dear Chips,

Good to know! Thank you for keeping us informed. Carry on the good tumor defeating info!


Mike

[skipg]

After reading the below from Chips I posted this reply in Ear Pain topic:

During my constant research I spoke to a proton specialist and he recommended that AN patients sleep with a 5% elevation of their head. Reasoning is that while sleeping the brain can swell naturally up to 1 cm. Elevating the head reduces this natural swelling and reduces pressure in the tumor area. How did he discover this? He was treating brain tumors on or near the optic nerve. Some of the patients were experiencing color blindness when they woke, by noon the color had returned. By sleeping with elevated head the color blindness did not occur. He has recommended AN patients go to bed, bath, and beyond and buy a set of bed raisers and put them under the head board. As a side note he was treating these tumors with radiation and warned the patients of only a 15% success rate in preventing blindness, when he went to Proton Therapy the success rate went to 50%. Could not find any proof to back up this claim. I am going to buy some bed raisers to try. This may help with pre and post AN treatments. Worth a try.

Any one else hear of this? Don't know where to properly post this.
Skip 

[MDemisay]

My Dear Friends,

I've nothing new to add but I just wanted this subject although it is a sore one for me (involving a lot of broken bones) to be refreshed and NOT forgotten for those of us who are relatively new or brand newbies.

It is a cautionary tale, one that is impactful and bears relevancy to all of us. It involves paying attention to internal signals that may or may not be subtle, (trust me for me they were not subtle), I was blatently ignoring them!

 If I weren't real , I would almost say, it's  a slapstick like in quality of my life.


Mike

 

[MDemisay]

To All of the Newbies out there,

Bump up time! Take this and consider it for a while...You may or may not depending on your situation have time to consider it. Beware and examine your life ----a big Acoustic Neuroma (such as mine was) doesn't just appear out of nowhere! Don't ignore your symptoms!

Mike

I've travelled a long way in my life and I'm grateful for that there must be some learning and some "pearls of wisdom" that I can pass on. For those of you in '"watch and wait" don't watch too long! Act on your symptoms!

Mike

[MDemisay]

Dear Friends,

Reading and rereading all of the newbie posts that I do, it seems to me that it is high time to restart this long forgotten thread and to resurrect it again in hopes that it will refocus and target in your efforts if you are new at this.

 Believe me it was not easy ...YOURS IS A JOURNEY THAT I WISH NOT TO BE FILLED WITH AS MANY YELLOW FLAGS AS MINE WAS!

 Now that you are here, be thankful,you have many friends, visit often and use us, we may not be doctors, but we are resourceful!

Mike

[Sam-NewZealand]

great post & some good reading.  I for one need to me reminded of this often - i often view myself as lazy then think of all the mental work i do that actually makes me rather busy!

time to stop and smell the roses!

[MDemisay]

Welcome Sam,

Use us often! About 12 months ago, I rediscovered this ANA forum and have been posting actively since, that is a lot of posting! Ever since, I have felt welcome to share my anxieties openly and mostly without judgement, as we encourage those new users( like yourself) to do. Welcome!

Use this as an opportunity to slow down, do some research, and consider your options. Most of all welcome to our family. Other than the time difference, and the presumed climate difference, how goes it in your part of the world?

Mike

[MDemisay]

Welcome Jeanne!

It is a long journey you are on, welcome just the same!

your friend,

Mike

[MDemisay]

Dear newbies,

I have nothing new to add here just wanted to bring this issue (of self preservation) to the forefront again as it remains important. There is a limit on Yellow Flags in the "race" for quality of life, I've been EXTREMELY fortunate in my life, I got many chances to wake up and smell the roses. You may not be as fortunate.

If this helps even one person consider options, it was more than worth it!

You are the "driver" of your own health! YOU ARE WORTH IT!

Be well!

[MDemisay]

Dear Newbies,

Bump up time again! There are a good number of you who will benefit, this is for you.

Mike