ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: lholl36233 on October 07, 2009, 04:38:49 pm
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Dr. Loeffler agrees this is a good idea for my hemangioma. I saw him with 3 residents he was training. They gave me a few facial nerve tests and agreed it was still 100%. One of the tests was asking me to hold my breath. It would be a problem if air escaped but no air escaped. That was a new one on me.
Proton therapy to stop any growth will give me a better chance for the nerve to stay at 100%. They said my hemangioma was right next to the facial nerve but not affecting the nerve. There will be 3 appointments before treatment starts.
I'll keep everyone posted.
Laura
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Hi, Laura
I'm a "graduate" of MGH's proton therapy (last Dec). One of the reasons I chose that was because of facial nerve concerns. So, I am curious about the tests they gave you? Can you describe (besides the holding-breath one - that is interesting...)?
When do you start your treatment?
I wish you well!!!
Are you coming to the brunch in Worcester on 10/25? We can chat!
Elaine
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Hi Elaine,
I should go to that brunch. I'd love to meet you and hear all about your proton therapy experience.
I'm waiting for a call for my next appointment. They only had me smile and hold my breath for facial nerve tests.
They told me a story of a rich man from Miami who flew back and forth to Boston for his treatment every day. I believe there is a proton center in Jacksonville, FL so the main reason for this man coming to Boston must have been Dr. Loeffler.
When I said to one of the residents, "Are you glad I didn't blindly have surgery in Worcester?" He didn't hesitate and said yes like he meant it.
I feel confident.
Laura
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They told me a story of a rich man from Miami who flew back and forth to Boston for his treatment every day.
LOL! Dr L told me that I could take the subway and do the therapy on my lunch hour (I work in Cambridge)! It was pretty much a 1 1/2 to 2 hour roundtrip experience (with about an hour of it waiting for & taking the subway!)
Well, I think you're in good hands, too! Interesting test for the facial nerve!
Elaine
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My 3 planning appointments are all on 10/29.
Treatment will start 11/11.
I'll see the locals Sunday at the brunch in Worcester.
Wish me luck...
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Laura ~
Luck!
I'll look for you Sunday at the AN Brunch at Maxwell's in Worcester.
Jim
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Hi Laura,
You are on the AN Calendar now. :) Best wishes and good luck. You will do fine.
Steve
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Thanks Steve.
If not for this forum, I would have never heard of BAHA, Drs. McKenna/Loeffler or Proton Therapy. I will be eternally grateful.
I'll keep everyone posted on how it is going.
Laura
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You'll love this.
I had to have the Dr. fill out a Famly Medical Leave Act form for me to cover the time I'll miss work traveling to and from treatment. I faxed the form over.
The dr's assistant called to say they don't fill out those forms for single dose treatment. I told her my treatment will be daily for 5 weeks. She put me on hold. A few minutes later she came back to say they can't complete the form until they know when treatment will start. I told her I got a date of 11/11. She said, "when did you find that out?" and back on hold I went. She came back and said she'd have the dr. fill out the form but they couldn't fax it where it needed to go, they'd have to mail it to me which is fine.
It's always something...
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I'm so confused.
I got my family medical leave form back from Dr. Loeffler. He filled it out that I had to miss work continuously. I thought I could work half days.
What has been the experience of those who had FSR? Did you stay out of work or were you able to work half days???
Maybe the form was not filled out correctly???
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Laura ~
I was retired when I underwent my 26 FSR treatments so I cannot offer you a direct answer to your question. However, I had absolutely no ill effects from any of my FSR sessions. In fact, I drove myself (a 62-mile round trip) to and from each and every treatment - all 26 - spread out over 5 weeks. I cannot understand why your doctor is being so hyper-cautious. I would certainly ask him.
Jim
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Thanks Jim.
I'll call tomorrow.
Stay tuned...
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Hi Laura
I'm sorry I did not get a chance to talk much at the Brunch yesterday. I bet Dr Loeffler filled it out that way "just in case" you feel you need it rather then have to go back and get another form filled out at a later date. But defintitly ask so you have all of your ducks in a row. Good Luck with your treatments and please let us know how things are going. Take care.
Erin
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Hi Laura,
Good luck on your treatment. Sounds like a good plan. Keep us posted.
Vivian
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Hi, Laura
I think my forms were filled out the same (but of course, can't remember...). I agree with Erin - it's likely a just-in-case thing. But do ask!
As you know, I commuted to-and-from in the middle of my work day, and never had a problem. Well, I did get tired around week 4, but still managed ok!
Good luck on Thursday!
Elaine
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I did call back to confirm if I should be out of work for the duration of the treatment. Dr. Loeffler's reason was that I have a long commute to MGH and that I would be tired from the treatment.
It will be easier for me not to have to work. I'll be able to go to treatment whenever they want me. This will allow me extra time to take the Commuter Rail to South Station then the red line to the MGH stop. I might get a few novels read over six weeks time.
Talk to everyone Thursday after my planning appointments.
Laura
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Hi,
Appointment number 1 was to take a mold of my teeth to attach to the frame for treatment.
Appointment number 2 was to implant the markers for treatment. (I have a headache. No surprise.)
Appointment number 3 was a CT scan with my head held in place by the frame.
Just waiting for the call on what time they want me on 11/11.
Laura
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Well, it sounds like you had a fun planning day, eh?
We'll be thinking of you next week when the real thing starts! Remember to find a comfy position for that teeth guard thingy! ::)
Good luck, Laura!
Elaine
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Thanks Elaine.
It might sound strange but I'm looking forward to treatment starting. It's been a long time coming.
I'll give it a few more days before I call looking for what time they want me 11/11.
Laura
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Hi Laura,
Sounds like you are all ready to go on the 11th.
Best wishes for an uneventful treatment!
My thoughts and prayers are with you and your extended family.
Keep us posted when you feel up to it.
Sincerely,
Sue
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:D Hi Laura,
I know how anxious you must be to start the treatment. However my 6 wks of FSR (LINEAC at MGH under direction of Dr Loeffler) went by so quickly and uneventful. And my early morming treatment was always within ten minutes of my appointment--never any major dealys... They do this like mass production.. You in and you are out... Nov 11 is Veterans' day... I'm surprised you are scheduled that day and on a Wednesday to start..
I'm sure ypu'll be pleased with the folks there!! :D
Take care,
Mary (aka Grammy/Mary)... (We talked to the brunch...) ;D
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Thanks Mary. I could never forget you.
I'm looking forward to Wednesday.
I'll keep everyone posted.
Laura
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Just checking in.
I've had 2 treatments so far. 28 more to go. It has been pretty uneventful. I do come home tired with a minor headache. I'm enjoying the train. Got a lot of reading done.
I'll keep everyone posted.
Laura
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Hi Laura,
Sounds good. How many books do you think you will get to read? Have you seen our ANA Book Club topic?
http://anausa.org/forum/index.php?topic=5989.0
I am curious what proton beam treatment is like to do. How big is the machine and the room? Do they move you around during treatment? Is it noisy? How long is one treatment?
Hope it keeps going well.
Steve
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Hi Steve,
At the rate I'm going, I think I'll read a book a week. There is a series by Mary Higgins Clark and Carol Higgins Clark. I finished one and just started the second. I'm going to have to get the whole series.
The machine is small. I'm only 5' 7'' and they told me they didn't realize I was so tall. It made it tougher to get me off of the machine. I can't be the tallest person to every do this? The room is about the same as rooms I've had MRIs in and just as cold so they received a big yes when they asked me if I wanted a blanket. The machine is quiet. The machine moves you when they are going in at different angles. Somestimes I'm hanging completely on my side. Apparently, the tumor receives the same amount of radiation but dividing it this way minimizes the effect to nearby healthy areas. It only takes about 20 minutes. Half of that is getting me in and out of the machine. I'm grateful to be able to do this because I know it is not an option in every hospital out there.
Talk to everyone soon.
Laura
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Hi, Laura
How are you doing? What time are your appts? I will PM you, as I have my yearly followup in Dec with Dr. L, and maybe we can meet.
I was in the same room. on the same machine. Quite an adventure just getting on and off the "bed"!!
For Steve and all ... MGH actually has three (I think?) other machines for proton delivery. Two huge cyclotron-types and a small one for just eye treatment. The eye machine is in the same freezing room as the one Laura is on. On the cyclo-type machines, you lie still and the thing revolves around you. As Laura says, on her machine, you get moved, sometimes you feel like you're going to fall off, but that's why you're strapped in so well. Not to mention that head guard that's bolted into the table. Oh, when you're tilted on your side, you feel like your teeth are certainly going to come right out! But, you adjust to that in a few sessions ... ::)
Stay well, Laura!
Elaine
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Hi, Laura ~
Your FSR experience reads quite similar to mine, even though I underwent my treatments in a different hospital in another state (Hospital of St. Raphael Cancer Center, New Haven, CT) . The cold room and short table (I'm 5'8") along with the occasional sensation of being on some kind of diabolic amusement park ride as the table you're strapped to is moved around in different directions, all seem quite familiar. They used to insist I sit on the side of the table, feet on the floor, for at least 60 seconds after each session (I had 26) to be sure I wasn't dizzy. Some days, I needed the minute to regain my sense of equilibrium, some days, I just smiled and said "I'm fine", hopped off the table and left for the 40-minute drive back home (I drove myself) which precluded my doing much reading. ;)
I'm sure you'll do great. Thanks for posting your experience.
Jim
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Thanks Jim.
I want to post every detail of my experience. If it helps one person, it will have been well worth it.
Laura
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Laura .....
Just tuning in with your story ..... how fascinating ..... and please give all of the details. It helps all of us to better understand this option for AN (and other tumor) treatment. Sounds like you are doing great. Keep it up!
Thoughts and prayers. Clarice
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Thanks Jim.
I want to post every detail of my experience. If it helps one person, it will have been well worth it.
Laura
Aye-men Laura and that is why we are here. Wellness wishes to you as you continue the process of completion of "toastie-postiehood" and hoping you are hanging in there ok. :)
Phyl
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Thanks Phyl,
I still feel good 4 treatments in. I'll be going in this Sunday because the center is closed Thanksgiving and the day after.
In the waiting room today, I met people from Tennessee and Ohio. Both of whom said I was lucky I lived so close.
Couldn't have said it better myself....
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Hi, I feel like sharing.
I saw Dr. Loeffler today. He asked if I was having any problems and if there was any change in my hearing or face. The answer to all questions was no. He wanted to know how I was commuting everyday.
Then it was, "See you next week".
Laura
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Hi, Laura ~
You seem to be progressing through the radiation quite well, just as I expected you would. Thanks for the updates, they are appreciated.
I met many nice folks while waiting for my daily FSR treatments back in the autumn of '06. Because the facility was a cancer treatment center, most of the people I met in the waiting room were battling cancer and yet, all were cordial and most seemed interested in learning something about my AN experience. These folks made me realize that, despite my frustrations over having to deal with all the ramifications of an acoustic neuroma (a benign tumor), how fortunate I really was. Considering my excellent outcome from both surgery and FSR, to this day, I feel blessed.
Jim
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Hi Laura
I'm happy to read that you are doing so well! Thank you for updating us on your progress!
Erin
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:D Hi Laura,
Just checking in and glad to know all is going well (as we expected)..
Yes, it's in and out with Loeffler. Kinda makes you realize that these treatmernts have really become routine
Hope you and your Mom and family have a great Thnaksgiving!!! ;D
Regards, Mary (aka Grammy Mary) :D
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I had to go in today because the Proton Center is closed Thursday and Friday.
I'm getting better at getting in and out of the machine.
Happy Thanksgiving Mary!