Has anyone had a bad or good outcome with 27 treatments of FSRT or FSR?

[sandyinwisconsin]

My doctor is recommending 27 treatments of Fractionated Stereotactic Radiation. 

Can anyone report their outcomes whether good or bad? 

Thanks

SandyinWisconsin

[Jim Scott]

Hi, Sandy ~

As you may recall from my previous posts and PMs we've exchanged, I underwent 26 FSR sessions (total of 27 Gy) on a debulked AN that was approximately 2.5 cm.  I drove myself to and from the FSR sessions, a total of 60+ miles, round trip.  I did this for five weeks (weekends off) and one day.  I did not experience any negative effects from the radiation.  Subsequent MRI scans indicated tumor necrosis and some signs of shrinkage.  That was seven years ago and today, I'm doing fine with no real issues from my AN surgery and radiation.  I wish you similar success.   

Jim

[Tod]

I had 28 sessions of FSR. Walked to sessions from work, walked back, and went on with my day. I did suffer from nausea and fatigue, but not so badly I could not read, review, and rate 5,000 pages of materials from 30 states applying for a federal grant. MRIs have shown no growth since then, but it has been less than two years so far.

All has been good since then.

-Tod

[theshawn65]

Hi Sandy,

I'm having my 2.4cm AN treated with 3 FSR next week on Wed, Thurs and Fri (I'm 48 btw). Have you spoken with your doctor about what the difference would be between a 3-5 FSR and a 27 FSR treatment?

Also, what has been discussed about the watch and wait option? Your AN is smaller than many on first diagnosis so waiting and having MRI's yearly (or every 6 mos) to see the growth rate may be an option? That only works if you are not having symptoms that affect quality of life or you cannot stand the thought of it being in there or course.

If you choose surgery please consider going to a place where the surgeons treat AN's on a regular basis and the surgeon has done hundreds of AN surgeries, not just a few dozen.

As others have probably already said you are in the right place as this place rocks for support and info gathering.

God speed.

[phantagrae]

I had 30 sessions of FSR this summer and had very few side effects.

About 4 weeks into my 6 week treatment, I had some fatigue, but I just let myself rest when I could, especially on the weekends
I also had some very mild nausea--more like a constant sense of indigestion--and my doctor had me do a short course of a steroid, only for a week or so.

I do have a couple of small bald patches, behind my ears, the larger one on my AN side (I just discovered the other smaller one a few days ago.)

Otherwise, though, I feel great.  The fatigue and nausea ended as the treatments ended.  I am fortunate in that my hearing has been only slightly impacted and my main symptom has been mild numbness on the AN side of my face.  While it's mildly annoying in my eye and my mouth, otherwise I don't notice it that much.

I will have my follow-up MRI sometime in the spring, but so far, so good.

Good luck!

[coinman]

I am on my final 4 of 26 treatments of FSR. I had issues with the tight fitting mask, but that was because of my  claustrophobia, you may not have that issue. I felt fine for the first three weeks then I was overcome with severe nausea and headache. My doctor gave me Dexamethasone and  it solved my problems with the nausea and headache but I will have to gradually be taken off that medication . I do suffer fatigue, but nothing severe. I work every day and still function but just not at the same level I did before, I rest when I need to and don't push myself. My hearing and tinnitus has become worse but I was told that will probably happen at first and then  things will settle down somewhat about six months after radiation stops. Overall ,not bad, the treatments are quick and a good doctor will get you over any issues that arise quickly. I wish you well.

[Sheryl]

My husband had 30 FSR treatments over a six-week period over a year ago for a different type of benign brain tumor called a meningioma.  He had already had two surgeries and one other radiation treatment (cyberknife) but the tumor seems to like his head.  Hopefully this round of radiation will stop a regrowth.  He did very well tolerating the sessions.  The worst part was having to be somewhere every day but they were very accommodating with our schedule and we tried to work it around errands in the area or eating out or sightseeing.  He was a little fatigued but was able to do just about anything we usually did (he is retired).  The most upsetting aspect is that even now, 14 months after treatment ended, his hair (and a very large area) has not grown back.  It did get him to cut his hair and "50's style" sideburns very short and he looks wonderful - gets compliments on his new hairdo.
Good luck and keep us posted.
Sheryl

[Jim Scott]

Sheryl ~

Interesting comment regarding your husband's hair loss following FSR. 

When my FSR was first planned, the radiation oncologist (Dr. Johnathan Haas) said that I might lose 'just a little bit' of hair at the radiation site.  I was not not pleased but resigned myself to it.  The day of my first session, he informed me that he had performed a 'recalibration' of the amount of radiation I would receive and that I should not lose any hair.  I didn't - and was pleased, of course.

Dr. Haas later told me that he ordered just enough precisely targeted radiation to stop the tumor's ability to re-grow (a total of 27 Gy) but not enough to affect hair growth.  It worked!  Seven years have passed and the tumor remains as dead as the autumn leaves now covering my lawn.  My hair is doing fine. 

I trust that, in time, your husband's hair will re-grow. 

Jim