Proton radiation for my hemangioma at MGH

[lholl36233]

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

[elliemae]

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

[lholl36233]

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

[elliemae]

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

[lholl36233]

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...

[Jim Scott]

Laura ~

Luck! 

I'll look for you Sunday at the AN Brunch at Maxwell's in Worcester. 

Jim

[sgerrard]

Hi Laura,

You are on the AN Calendar now.   Best wishes and good luck. You will do fine.

Steve

[lholl36233]

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

[lholl36233]

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...

[lholl36233]

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???

[Jim Scott]

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

[lholl36233]

Thanks Jim.

I'll call tomorrow.

Stay tuned...

[epc1970]

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

[Vivian B.]

Hi Laura,

Good luck on your treatment. Sounds like a good plan. Keep us posted.

Vivian

[elliemae]

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