My Journey with "Fractionated Stereotactic Radiation"---"Treatments completed"

[patt]

Hi --

My name is Patt.  I was diagnosed on March 22, 2010 with a Right 2.7cm acoustic neuroma.  I have been on this forum since that time and have gotten so much good information and met so many wonderful and caring friends.  What a great place to come when you need a question answered, to vent or just to visit.  All of you have been just great.

I researched for many weeks -- met with several Drs.  I finally made my decision to the treatment that will KILL this tumor.  I have always had a loss of hearing in my Left ear.  When this happened to my Right ear, I was very upset.   Since then and being on a very large dose of steroids  -- I have most of my hearing back.  For that reason --- my Radiation Oncologist has decided to treatment me using "Fractionated Stereotactic Radiation".   That means treatments 5 days a week for about 5 weeks.    He is hoping to save as much of my hearing in that ear and to be gentle to the healthy tissue around it.  

Today, Thursday - May 20th -----    I was fitted for my mask, which helps in positioning during my treatments.  That procedure was very easy  -- went well.   Had a CT with the mask  -- that was to help with the mapping.  Had another MRI, which is another tool to help map the treatment area.         I told all the Drs that I could hear better out of my RIGHT ear than my LEFT ear  -- had another hearing test today and YES, I was right!!!   My heariing has come back!!!  I was right!!!    I have to understand that with the Radiation treatments  --  there is the chance of losing some of my hearing.    I have faith that this treatment will KILL my tumor and that I am going to have quality of life after my treatment.

It has been very helpful reading the posts from all of you, so I am going to share my journey with you.   Now, I just have to wait for the call from the Radiation Oncology department telling my when my treatments will start.    I will keep you updated.

The hardest part is over!!   I feel very relieved and ready to move on!!

Thanks again --
Patt from Minnesota

[Jim Scott]

Patt ~

Congratulations on coming this far and sharing your journey with us.  I'm pleased to learn that the ANA website forums have helped you.  I'm sure your FSR sessions will be unproblematic and ultimately successful (the AN dies).  Enjoy your hard-won serenity 

Jim

[Lizard]

Patt,
I'm so happy you have made your decision, now just sit back and enjoy the ride...hopefully your hearing remains well in your AN ear throughout the FSR and after.  Please let us know how you are doing and feeling!

Take care,
Liz

[patt]

Hi ---

I am having a good weekend  --- first time in a long time.   Now that I have made my decision for treatment   --  the first load if off my shoulders.     I find myself thinking about other things --- not which treatment to go with.    You were all right -- that was the hardest part.  Now I have been thinking about the side effects from the "FSR" --- but I am going to think positive thru this whole thing.   This forum will help me too.

For those of you that are still in the deciding stage -- good luck -- you will find the right fit for you -- it may take awhile, but if feels really good when you do!!!!

I hope sometime at the beginning of the week I will hear from Radiation Oncology ---- I will let you know!!

Patt from Minnesota

[oceansorcas]

Patt, hope you just received my reply to your message earlier.  I had FSR ten years ago by Dr. Gil Lederman.  He can be contacted at Radiosurgery NY - 212-246-4237.  Lederman pioneered FSR for AN and has treated many AN in the 3 cm range. 

[tichinose]

Plan to be a bit tired.  I have been doing the treatment for 9 times.  !7 more to go.  I don't know why but 15 mins of radiation sure makes you drained...good luck

[patt]

Good Morning ---

I want to thank all of you for wishing me well --- Jim, Liz, oceansorcas and tichinose.    This forum means alot to me and I will continue to update during my treatments.   I know that there will be ups and downs, but with all of the support that I am getting --- I know that I can do it and "I WILL"!!

"tichinose" --- wishing you well during the rest of your treatments.  Keep us posted how you are doing.  Hope you had a rested weekend, so you can start another week with your treatments.

Just waiting now for that phonecall that tells me to come in and start the treatments.  I had all the prep work done last Thursday --- they said that they would start sometime this week.   I am hoping!!!!

I did have a good weekend --- did alot of outside work -- keeping my mind off this thing in my head!!

Patt from Minnesota

[oceansorcas]

You will be fine.  Much, much more is known about FSR today than was the case 10-15 years ago.  Also, the technology and machines are greatly improved.  I do not believe radiation makes you tired - I had no side effects whatsoever.  Good luck.

[patt]

Hi Friends ---

I still didn't get the start date for my "FSR" treatments.   So, I called the Dr's office and I won't be starting until atleast June 1.   Right now, I am very upset.   I wanted to get this going.   I do have a headache this morning --- could be from stress or most likely from "AN"!!!  I have been pretty lucky --- haven't had headaches  --- more pressure today than a headache.   Not a good day.

Thanks for listening.  This isn't a fun journey that we have to travel.

Talk to you soon ---- Patt from Minnesota

[Anomar11]

Hi Patt,

I'm glad you came to a decision for treatment that you feel good about.  I understand the frustration having to wait.  I was diagnosed Memorial Day Friday of '08 and couldn't get my first consult at Mayo Clinic until July 27, then for a number of reasons didn't get treatment until 11/08.  You will be just a little over 2 months before you start.  Since there's nothing you can do about it, try to step back from thinking about it (although I know this is easier said than done), try to keep busy with friends family or do something nice for yourself.  The time will go quickly.  All the best. 

Mona

[patt]

STARTING DATE!!!!!!!!!!!!

I got the phone call that I have been waiting for.  I will begin treatment on Tues, June 1st.   I am anxiously waiting to start --- but I am alittle nerveous about the effects that I will have from the treatments ---- duriing and after.

We are leaving for camping this afternoon --- won't be back until Monday afternoon.   We will be with wonderful friends  --- I know that we will have a good time.   It should take my mind off of what is ahead of me next week and the 5 1/2 weeks of treatments.

Thanks for all the wonderful messages from all of you.  I will be back on Monday to visit!!

Patt from Minnesota

[sunfish]

A starting date!  What a relief!  I'm jealous of your camping trip - I've been thinking I want to get out and do some camping soon - it's good for the soul.

[Jim Scott]

Patt from Minnesota ~

I can only relate my experience but I never had any problem during or after my 5 weeks of FSR treatments.  No nausea, headaches or anything unusual. I drove the 60-mile round trip each day without any problems at all.  I'm sure you'll do just fine.  Now, enjoy the holiday weekend and the camping trip! 

Jim

[patt]

FIRST TREATMENT OVER ----

June 1st --- and I have started my "FSR" treatments!!   I was told today that I will have 30 treatments -- the machine will move around to different target areas -- there are "6".   It went very smooth  -- very easy.   I was on the table for less than 30 minutes.  They told me that it would even be shorter from now on --- first time takes the longest.   I am ready to "KILL" this thing!!!

Now I will be counting down the days until that very last treatment.  I will also be waiting for some side effects to begin  -- I hope not, but I will be ready to deal with them.   Hair loss is something that I was told that I will have to deal with too.   I will share with you my experiences.

This site has been very helpful.  I hope others find this site as they need it.  What would we do without all of you??

I will be back tomorrow to tell you how I did.   I will see the Dr after my treatment.   I am anxious to find out from the MRI if my tumor had changed in 3 months.

Patt from Minnesota

[tichinose]

It gets to be routine...I have had now 15 treatments with 11 to go.  It goes by quick.  The tiredness hits after a few treatments.  I actually think some nerve problems feel better.  We'll see..good Luck