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

[Lizard]

Patt great news, please keep us posted!
liz

[patt]

Treatment #2 ----

Just got home from treatment #2.  Very easy  - takes longer to get there than the treatment itself.    I am getting into a routine - very nice staff that is taking care of me.

Every week the Dr has a visit with his patients -- more often if needed.  Also, a visit with the nurse in the department to go over meds and if there are any problems with your health.   Before my treatments started, to help with the mapping,  I had a repeat MRI.   The good news was that there wasn't any change with the size of the tumor  --- let's hope that it stays that way!!!!    The Dr said that I will start to feel tired --- that is the biggest effect of the radiation on acoustic neuromas.   Rest, but don't forget to get out and move around.   The nurse encouraged me to keep cream on my neck and watch out for the sun --- cover as much as possible or just stay out of the sun.   Better to be safe than sorry later on.

I have been writing my experience down in a journal everyday  ---  it is hard to believe what we go thru with a tumor like this.  Believe me, it has been a journey --- and it isn't over yet!!!   I just keep traveling.

Patt from Minnesota

[Jim Scott]

Patt ~

Thanks for the daily update on your FSR treatments.  My daily round-trip drive to the hospital cancer center also took longer than my radiation treatment.  The pre-radiation MRI (I also had a CT scan) are standard so that the doctors can 'map' the radiation accurately.  I don't recall feeling unusually tired while undergoing the FSR sessions but its been four years and one forgets such things.  I do know that I never had any 'issues' such as hair loss or nausea.  I trust that your FSR experience will be similarly uneventful and that your journey remains smooth and successful.

Jim

[patt]

Hi to ALL of YOU ----

It is the weekend and I am enjoying the time.   Went out with friends last night --- friends sure can pick you up.    I finished my 4th treatment  --- 26 more to go.   They are very good to me at the Clinic, but I will be very happy when I am done.

I really don't feel any effects from the treatments.   I am waiting for the "tired" to set in, which the DR said I would experience.    The last couple of days I have noticed a metalic taste in my mouth.    Feel good, so really can't complain.

Hope everyone is having a good weekend  --   I will be back to keep you posted as to how I am doing.
Thanks for everything --
Patt from Minnesota

[patt]

Good Afternoon to all my "AN" friends ------

I completed another week of treatments without much discomfort.   I was alittle tired a couple of nights, but that could be my age catching up to me.   I felt alittle nauseaed one morning, but that passed quickly.   NO hair loss yet, so I am very happy about that.

Today was treatment #9 so that means I have  21 left to go.  I can do it --- I will do it.

I have to tell you what my daughter did for me.  Made me a Radiation calendar.  Each day that I have radiation, I have a page to read that was written by a friend or family member  ----  I have had alot of tears, but tears that are helping me get thru this journey.

Hope everyone had a good day --- Have a good weekend too.

Patt from Minnesota

[yardtick]

Patti,

You daughter is a real sweetie!!!  Good luck with the rest of your treatment.

Anne Marie

[patt]

Hi Everyone ---
   
       I haven't posted for awhile.  I hope this finds everyone going thru surgery or radiation finding help with their journey.  A journey it is!!!

       I have "6" more treatments and then I will be done.  I have really done pretty good.   One of my concerns was losing my hair and so far the hair is NOT falling out  -- I am keeping my fingers crossed.    I have had days when I have been really tired - not everyday.  So, on those days I find myself resting alot.  I was told to listen to my body.   If it tells me to rest -- I will rest!!!     I have been very weepy during this time too.   Doesn't take much to make me cry.    Again, what a journey!!    Today I have noticed more pressure in my head -- NOT a headache, but right between my ears -- pressure.  Have any of you experienced anything like this??   If so, what was it???    I notice that my hearing is alittle different because of this too.    My Dr is back this week, so I think I will be talking to him.  Hope it isn't swelling  -- if it is -- I may have to go on a steroid to get the swelling down.

        I have NO regrests that I picked "FSR" for my treatment.   In another week, I will be done and put this whole thing behind me.  I will move on with my life  -- and will be a stronger person.   I do pray that when I have my recheck -- not sure when that will be --- that this tumor is DEAD!!!!!     I have been so lucky to have such wonderful family and friends to help me thru this whole thing.   I hope that I can be as supportive to others like they have been to me.

       To those of you that are still in the process of finding your right treatment, I hope you find strength to get thru that process.  Once you do that  ---- things will get better.  It did for me.   I was told that was the hardest part of this whole thing -- I have to agree!!!

       I will return in a couple of days and update you as how I am doing.   I have good thoughts that things will continue to go well.  I have a wonderful staff at the Clinic that I go to for my treatments.  They are my cheerleaders  -- they keep telling me how well I am doing and that I can continue --- I know that I can and I will.

Later ---
Patt from Minnesota

[Jim Scott]

Hi, Pat ~

I'm so pleased to learn that your FSR treatment is progressing nicely.  Do keep us updated - and know that you have a cheering section here, too. 

Jim

[Lizard]

Patt,
I was wondering how you were doing, almost at the finish line and doing well...always great to hear.  The pressure you're feeling can be any number of things, but swelling is possible.  Just talk to your Dr and please report back.
Take care and yes this can also be a VERY emotional journey so let yourself feel and it will help, even down the road when you look back at where you started.
Look forward to hearing from you soon!
Liz

[patt]

Hi to All of my AN Friends--

      My treatments are done!!!   I went for my 1-month follow-up yesterday and I am doing well.

      I had 30 treatments.  During that time, the side effect that I noticed was that I was tired alittle more than usual.  I still did everything that I normally would during the day.   I would notice a metallic taste in my mouth every once in awhile --- I was told that was normal.    I did NOT have any headaches nor was I nauseated from the treatments.      I did get a thinning of hair at the site of treatment.  Would you notice it???   NO!!   I had to show people.

      How do I feel today???   I feel great that this part of the journey is completed!!!   I do still have a fullness in my head every now and then.  My Dr said that is still from some of the irritation around the tumor site.  It will take awhile for that to simmer down.   I didn't lose my hearing --  but when I have the fullness my hearing is different.

     Now what???   I will be having a repeat MRI in October --- that is 3 months after my last treatment.    Will we see a difference???    We may see the tumor alittle larger --- that could be the tumor swelling before dying.   It's a waiting game.  His plan will be to have another repeat 6 months after that --- hopefully more info at that time.

        I want to "THANK" all of you for being so supportive to me during this journey.   You were all right --- the biggest part is to decide on the treatment and be comfortable with the treatment that you decide on.   Once you do that --- you are on your way!!!

         If there is anything that I can do to help any of you out there, please feel free to send me a note.   I sure will take the time to answer you ---- the help from this forum got me thru this.   No one knows what we are going thru ---  other than the ones that have traveled in these same shoes.     We have/had a very strange tumor that many haven't heard of, so we need each other for support.  I will be here for you!!!

                 Thanks again and good luck to all of you ---
                       Patt from Minnesota

[Lizard]

Patt,
You sound like you are doing great, how exciting for you!  Great attitude, and I'm so happy everything is working out.  Don't be surprised if you still don't see any tumor death at 6 months, it can take a while for the booger to shrivel up.
Look forward to hearing more great news from you soon.  Support is what we are here for and thank you for sticking with us and offering to share your experiences with others.
Take care,
Liz

[Jim Scott]

Hey, Patt ~

Congratulations on successfully completing your FSR treatments!  The 3-month MRI may well show a swelling-related increase in tumor size but that should resolve within another 3 months.  I did for me, anyway.  May your AN be on the way to 'Necrosis town'! 

Jim