Proton Beam Radiation

[inmaine724]

Laura, or anyone else that has had the Proton Radiation...I wanted to ask a few questions

1. Will I have any blistering on the skin or loose hair in the area that they do the radiation? A few people have told me that, and I looked it up online, but the Dr had said there would be no side effects...
2. Do they put you on any medication after the treatment, to help with the inflammation?
3. And did your symptoms get worse during or immediately after the treatment, and then get better?  And if worse, how much so?
4. Also, when they put those beads under the skin...what is that like?  And I assume they take them out when they are done??  ha

Really starting to freak out about leaving my girls for the 6 weeks.  I am going to be moving to my uncles house (he has an appt upstairs) in Roslindale, and although I will be coming home on the weekends, I am the total hands on Mom here, so turning the reins over to my husband is really stressing me out.

They said the urgency isn't great, but that it is actively growing (4mm since June) so I just want to get it over with, but...ughhh

Thank you!!
...Danielle

[lholl36233]

Hi Danielle,

I had no blistering.  There were 3 different angles the radiation would go in at in the size of my tumor.  The woman who does my hair told me I had 3 bald spots in that size and location but the hair quickly grew back.  I had no medication.  My symptoms only got better.  When they put those beads in under the skin, you get local anesthesia.  As the beads were going in, it sounded like my head was being stapled but of course, I didn't feel anything.  I had a good headache afterward but nothing tylenol couldn't get rid of.  Make sure you wash your hair first because they don't want you to wash it for 24 hours afterward.  Dr. Chapman does this procedure.  He is very nice.

Do you have a date yet for the planning day which includes being fitted for the mask, implanting the beads and a CT scan?  My planning day was last Oct. 29 and I started treatment 11/11.  Keep us posted!

Laura

[inmaine724]

I don't have a date yet.  The ball is rolling though.  They said getting all the insurances and stuff in order takes about 2-3 weeks, so I'm just waiting for them to call. 

I'll just be happy for it to be done.  I hope my outcome is as good as yours has been!

[elliemae]

Hi, Danielle
Late reading this and your other thread ...
I also had the 30 visit proton therapy at MGH (2 years ago in Nov/Dec).  I did start with the fatigue about week 4, usually late afternoon (my appts were in the AM).  Fatigue probably lasted a few weeks after the end of therapy too, but then went away.  (I continued to work during this ... I am just down the street in Cambridge, so at my consult with Dr. L, he told me I could just come on my lunch hour!!) 

I had no other problems, except a headache from that darn headgear the first day (plus I thought my teeth would come right out!)  That was heavy!!!  No prescribed medication for me either, except about 4 months after when I started feely a little "wonky" headed, I took some Advil, and that seemed to work for me.

Ah, yes ... the beads!  Inserted just as Laura described.  No pain, but a bit gross ... they apply a good deal of goop to your hair, and of course, there may be some bleeding from the incisions.  So, do remember to bring a HAT with you!!!  It was pretty ugly for me walking down the corridors out of the hospital holding some gauze to my head.  I eventually stole my brother's baseball cap!!

I had the one year followup MRI last Dec, and since I was "stable", have the next followup in June 2011 (18 months).  We shall see how that turns out then ...)

Wish you the best!
Elaine

[inmaine724]

Hi Elaine!

do you remember if you got to set up the appts, or do they dictate that? I ask because we are hoping to set appts so that I can be home on the weekend, then driver my girls to school Monday andf head to Boston, then have my treatment early Friday so I can be home Friday afternoon to pick them up.

[lholl36233]

Hi Danielle,

I remember it was a few weeks after I met Dr. Loeffler before I knew when I was coming back for my planning day.  I did advise the person who called me of the times I would prefer for my daily appointments.  They stuck to that pretty well.  Before you leave on Friday, you get your appointment schedule for the next week.  It might be tough for them to schedule you early one day and late another but you can certainly ask.

How long is your drive from Maine?  I'm guessing you're further north than Portland. I live near Worcester, 40 miles away.  I'd take the 2:40 Commuter Rail from South Station and be home by 4:15.  Not too bad but not down the street like Elaine.   

Laura

[inmaine724]

Hey Laura!

We are 4 hours away, up in Belgrade Lakes (Central Maine).  I lived in Portland forever, but after we had the kids, we moved up here to settle down. If I lived in Portland, I think I would even commute.  2 or so hours wouldn't be so bad one way.

I just want this to be done...

:-)

[elliemae]

Hi, Danielle
I concur with Laura.  They set up the first weeks' appt schedule and called to tell me what it was. The first day, the techs asked me what time I preferred for the next week, altho first thing in the AM was out because that was reserved for the eye machine which is in the same room as the machine I was on.  (So, my "lunch hour" appts were generally around 10:30 AM !)

They give schedule every Friday for the next week.  Did miss a couple of times due to the machine being out-of-order!!  But no worries, they just added those days on at the end.  (Laura, did that ever happen to you???)

Also, if you do begin your treatment in Nov, the center is closed on Thanksgiving and the day after.  AND, they want you in on the Sunday after Thanksgiving so you do not miss too many days in a row.

It will be over before you know it ... and you can ring the bell!! (You'll find out about that too ...) 

[lholl36233]

My last day was supposed to be Tuesday 12/22.  The Proton Center was open Sunday 12/20 so they could close Christmas Eve.  I didn't go in 12/20 because of a major snowstorm so they let me come in 12/23 to make it up.  Another time, my appointment was at 1:40.  I was hopeful to catch the 2:40 train from South Station.  At 2:40, I was still on the table.  There was a problem with the beam.  They were always talking about, "waiting for the beam".  I got a headache having the mask on for so long.

Those were my only mishaps.   

I'm not anxious for December to get here but I am anxious for my 1 year MRI on 12/15.  I'm sure it will be all good.   

[inmaine724]

I didn't realize the schedule would be so erratic...I have 2 little girls here.  This is going to be so hard...

[lholl36233]

Keep the faith Danielle.  It will be hard but the end result will be worth it.

[Lizard]

You can do this and I'm sure your schedule with have to be adjusted some, but hopefully you work out the appointments ahead of time.  Remember, this is only temporary...
Liz

[lholl36233]

Danielle,

I was thinking it will probably be another week before you hear about your planning appointment.  Looking forward to hearing about it.

Laura   

[inmaine724]

Hey Laura!  I'm so anxious for them to call me.  I would like it to be all done and over with by Christmas.  We're getting down to the wire if it's going to be 6 weeks of therapy!!  :-)

Thank you for thinking of me!  I'm also anxious to hear about your 1 year come December.  You have a very similar scenario to mine.

[Jim Scott]

Danielle ~

I must apologize for being preposterously late with this response but I misunderstood your initial post and assumed that I had nothing to add.

I underwent 26 FSR 'sessions' in the autumn of 2006 for a surgically reduced (from 4.5 to 2.5 cm) AN.  Frankly, they were uneventful.  I suffered no nausea, headaches or unusual fatigue and had no red marks or hair loss.  I received approximately 27 gy of radiation over the 5-week period.  My radiation oncologist, a brilliant doctor, informed me that I would be receiving the lowest possible effective amount of radiation, (precisely directed), to avoid side effects.  His statement proved correct.  Within two years, the remaining AN showed necrosis and the beginnings of shrinkage. 

The radiation center was a 60 mile round-trip for me so I always scheduled my 'sessions' for early afternoon, leaving my mornings free and getting me home before the rush-hour traffic began in earnest and in plenty of time for dinner.  The staff at the radiation center was very accommodating (most of the other patients were being treated for cancer).  The sessions lasted approximately 45 minutes, each, so I was usually there a little over an hour per day for 26 days, Monday through Friday with weekends 'off'.  Not a bad experience and one I hope you'll be able to emulate. 

Jim