3 Month Trilogy Update

[Craig]

I had 4 treatments of radiation treatment on the Varian Trilogy machine 3 months ago. I just had a 3 month check up. The MRI showed no growth or swelling which is great. I am scheduled to go back in nine months for a hearing test and another MRI. My hearing has improved since the treatment and the ringing noise has decreased to a low ring.

I am very optimistic about the coming months. I am also training for a charity bike ride in October. It is a 150 total ride over two days. I can tell that I get a little fatigued faster than I used to but that is to be expected.

Cheers,

Craig

[Betsy]

Hi Craig,

Thanks for posting....I'm going to be having treatment with the Trilogy system soon, so I've been watching for posts like this.  It's so encouraging to read about your excellent check-up!  Very good news about the ringing, too.

Just out of curiosity, were you offered the one-shot treatment?  If so, what made you go with the 4 shot treatment?

Betsy

[Craig]

I was not offered the one shot treatment. I was offered 5 treatments and then mid-week during the treatments, the doc backed it down to 4. I had 6GY each day. Where are you having your treatments? Let me know if you have anymore questions.

Craig

[Betsy]

Hi Craig,

My Trilogy treatment will be at the Geisinger Medical Center in Danville PA with Dr. Gergel.  I had also considered GK at the University of Maryland Medical Center, but it just didn't feel "right" for me.  They've had the Trilogy unit in Danville since 2005.  Dr. G told me about a recent test they did that showed accuracy within .02mm.  That was with the single treatment though.  The fractionated treatment was closer to .5 mm.  I expressed a preference for the single treatment, but we haven't really decided yet.  It's taking a very long time to get it scheduled!

Betsy

[Patch]

CRAIG


       HI, MY NAME IS MARK.  ITS SOUNDS LIKE YOU HAD SIMILIAR TREATMENTS LIKE MYSELF. I HAD 6 LOW DOSE RATIATION TREATMENTS OVER TWO WEEK( 3 A WEEK ) I JUST FINISHED THEM FRIDAY. MY AN IS 1.2CM. I HAVE A FOLLOW UP APPT. WITH DR IN OCT AND WILL HAVE ANOTHER MRI IN DEC OR JAN.

      WERE YOU FITTED WITH A MESS TYPE MASK FOR YOUR TREATMENTS? HOW LONG DID EACH TREATMENT LAST?

      I HAD A MASK BUT IT DIDNT NEED TO BE SCREWED INTO MY HEAD (THANK GOODNESS ) AND EACH TREATMENT WAS MATBE 10 MINUTES TOTAL.

ANY INFORMATION YOU HAVE WOULD BE GREAT TO SHARE.  BEST WISHES

MARK

[Craig]

Mark,

They fitted me with a mesh type mask and it did not need to be screwed to my head. It was clamped down to the table. Each treatment was a piece of cake. I would walk into the docs office and within 45 minutes, I was headed home. The treatment itself only takes 20-25 minutes or less. It takes them about 10 minutes to set you up on the table.

It is good to hear of other Trilogy patients. I am extremly happy with my decision and it was nice to have Vanderbilt University Medical Center in my backyard.

Cheers,

Craig

[sloxana]

Hi Craig

I'm in Nashville too and saw my first doctor last Monday since being diagnosed with a 1.4cm AN on July 9.  My doctor recommended FSR and said I would probably have 10-25 treatments to be determined by the radiologist.  How do I make sure I take advantage of the Trilogy at VU?  Will my doctor automatically send me there even though he is at St. Thomas?  Who was your doctor?  Is he at Vandy?  Sorry for all the questions!
Thanks,
Susan

[Craig]

Susan,

I first saw Dr. Richard Prass at St. Thomas and he was the surgeon. He advised to look at all options. I met with Dr. Rosenblatt, who is the radioligist at St. Thomas. They have the older LINAC system at St. Thomas. I am sure it is affective but I did some research and called Dr. Cmelak at Vanderbilt. I set up my appt. with him and we scheduled my treatment. You have to remember that you are the one who makes the call on your treatment. I emailed you my phone number so you can call me if you would like to discuss. The hardest part of this whole mess is making the intial decision on the treatment. The radiation treatment is the easy part.

Cheers,

Craig

[BeJoi]

Hi Craig and everybody,

I'm glad to hear your news, Craig.  It's great that it's showing no swelling in 3 months.  I just completed my 28 FSR treatments.  I did wear the mesh mask, which I have at home now.  I may decorate it, may throw it away.  Or, maybe I should keep it just in case it could be used again in the future--heaven help me.

I had 50 GY total, around 5000 rads.  My tumor measured 2.5 cm on the MRIs and it showed some necrosis on the end near the brain stem before even starting treatment.  I am noticing no change in hearing.  I have been experiencing quite a bit of anxiety, especially when I try to sleep at night.  I had to get up every day for a 6 am treatment (mine lasted about 20 mins every day), and that really messed with my sleep rhythms.  I'm just now trying to get back to my normal sleep schedule, and I'm hoping that will help with my anxiety.  I'm also cutting out caffeine completely, because I've noticed that on the days I drink iced tea, I feel much more anxious.

I felt more comfortable with the smaller doses of radiation every day over a longer period, then doing one shot.  I was always going to go with radiation and hope that I will never have to have surgery for this or any other AN.  My radiation oncologist met with me weekly to answer questions.  The radio-techs were very nice--though a little too chipper for that early in the morning.

My hair thinned somewhat in the 6 areas being radiated, and I'm looking forward to it filling out again.  I'm still not feeling quite myself.  I'm sure I just need some time to recover from the whole process--from diagnosis through treatment.  We'll see how that goes.

That's it for now. 

Beverly

[mema]

I had 25 treatments FSR on the Novalis which seemed exactly like the trilogy.  My mesh mask had a mouthpiece in it.  They actually had to remove it during the first few sessions because it was making my two top front teeth numb.  I had a cold during treatment and cough a few times.  I am greatful to see this in this film that it is so precise and they are so careful and on target, and no room for error like a cough.  I didn't agree with Dr. Kim saying there  are no after symptoms.  I just wish docs were more upfront about that.                            I am glad I chose this treatment anyway.                                                                                                                                         


                                                      mema

[BeJoi]

I wanted to correct something in my last post.  My AN was 1.9 cm, not 2.5.  I'm not sure why I wrote that, because I'm thankful that it was less than 2 cm.  Anyway, it's been a week post treatment, and I'm feelling much more myself now.  I cut out all caffeine, and I'm not having the same anxiety any more.  My doctor was pretty upfront about the side effects, but I did notice that anytime I experienced something, the team was hesitant to say it was due to the radiation.  I think they're covering their butts, but that's okay.  I know some of the side effects were from the radiation, and some were definitely a result of stress and lack of sleep. 

They took pictures every day to make sure they were on target and took additional films once a week. I think the trilogy system is very good and accurate.  The mask was not a problem for me.  Some days it was tighter than others.  They said that was due to my face and water retention.  The mouthpiece sometimes pushed on my teeth, and other times did not. 

I'm glad I didnt' have a cold like you Mema.  That must have made it even more miserable to lay there unable to change your head position or blow your nose. 

Beverly

[mema]

Bejoi,                                                                                                                                                                                           


I remember swallowing alot between the rays.  I guess it was the first two and a half weeks of treatment I had that nasty cold.  But I learned to time in between the actual rays and thats when I would cough.  The techs would also stop and say cough it out and when I was done they would begin again.  I really always wondered if thats why I had side effects.  But now I realize just how precise the treatment was.

[Sidro55]

My AN was 4.5 cm and was all but a small peice removed in 1997. I was already deaf in my left ear and the surgons said it was best to leave the small amount to keep some hearing in my right ear (50% hearing with a hearing aid). I have had MRI's every year to check growth and it has stayed the same size. I was 47 when I had the surgery and was never able to return to work. I still have the weakness, dry eye, droppy rt side of my face and almost no balance so I uese a quad cane. Doctoes did not know the deafness in my left had also screwed up the balance nerve in it, so removing the balance nerve in the rt side really caused major problems with my walking. What drives me nuts is the tinnitus! The last few months it has been getting worse. The static and ringing is bad but the screeching is the thing that really gets me climbing the walls.

I had the surgery to try to fix my face in 1998 without success. I later found out the doctor that tried to repair my face had only done no more than one of these and that was my own fault for not finding out more about his before I said ok.

Later in 1998 I had the gold put in the rt eye lid and it stayed in for 4 1/2 years but then it started comming through the lid to the outside so I had it removed.

Now after almost 10 years my hearing is getting worse and I have found out the AN is growing. I saw Dr. Hunter at St. Thomas and I will have around 28 treatments at St. Thomas starting as soon as they call me. I had the mask made yesterday. I hate the trip to Nashville 5 days a week from my home in McMinnville, about a 80 mile trip each way.

Sid