Proton radiation for my hemangioma at MGH

[lholl36233]

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

[lholl36233]

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

[elliemae]

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

[lholl36233]

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

[suboo73]

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

[MLB57]

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!!
Take care,

Mary (aka Grammy/Mary)... (We talked to the brunch...) 

[lholl36233]

Thanks Mary.  I could never forget you.

I'm looking forward to Wednesday.

I'll keep everyone posted.

Laura

[lholl36233]

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

[sgerrard]

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

[lholl36233]

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

[elliemae]

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

[Jim Scott]

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 

[lholl36233]

Thanks Jim.

I want to post every detail of my experience.  If it helps one person, it will have been well worth it.

Laura

[CHD63]

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

[ppearl214]

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