Getting Geared Up For Proton Treatments.

[BostonJake]

Hi Gang,
Long time no talk!  Hope everyone out here is doing well.  I thought I'd revisit the site now that I'm about to have proton therapy.  Maybe I'm just a science geek, but this stuff seems pretty cool.  Ihave a few questions and thought I would see if anyone out here exprienced something similar.

I had surgery for an AN at MGH October 2005, the first 72 hours were rough.  I had to have a IVC filter put in because of some pulminary embolism issues.  After that, things went much better and I would out of the hospital within the week. I should mention that they had to leave part of the tumor in my head because it was closely associated with a major artery in my head. Fast foward to a few weeks ago and I have my six month MRI, that shows the tumor has slightly changed shape, and maybe even grown a smidge.  So, I'm starting Proton Therapy.  From what I understand, there really aren't any huge side effects due to the procedure being so exact.  My questions are.  1) Does it hurt at all?  (Everyone says no, but I figure someone out here won't sugar coat it for me.)  2) It is noisy, like an MRI?  3) Has anyone has a AN treated like this, and it continued to grow?

Thanks for the input!

[jamie]

I can't answer all your questions, but I'll help with what I can....

1. No it doesn't hurt at all. However you may get a wierd smell in your nose, some do, some don't.

2. I had CK, and it was nowhere near as noisy as an MRI, just a minor buzzing sound when it's shooting, and the sound of the robot moving positions, but I don't think you'll have the robot.

3. There are not alot of proton patients around here, it's pretty new, but ionizing radiation works the same so I'd imagine the success rates should be comparable. Mine's good so far....

[ppearl214]

Hey Boston Jake:

Sounds like things are progressing well for you!

I am in the same boat as Jamie, having had CK at Beth Israel last month (wow, can't believe it's 6 wks ago, time went by fast). I can note like Jamie that there is nothing felt during treatment.  The MRI's I've had have been wayyyyyyy much louder than the CK robot but can't answer as for Proton. I hope you have spoke to the MGH gang about the sounds made, will ear plugs be provided, etc. They may also let you "see" the Proton machine (if not in use) prior to your treatments (I saw the CK machine 1 week before my treatment and it really, REALLY helped me with the fear of the unknown as well as knowing what the treatment site looked like). 

So, to answer your questions:
1.  Does it hurt at all?  Nope. Didn't feel a thing!
2.  Is it noisy like MRI?  Not sure but ask for ear plugs to play it safe.
3.  Treated like this and continued growth? Had CK, not Proton.  My 1-month post treatment MRI shows my AN to be swelling before the necrosis... I'm on target for the darn things death!  All hail the darn thing's death!

Be well! Am cheering you on from the Northshore!
Phyllis

[okiesandy]

Boston Jake,

I had Ck 4 1/2 months ago. No pain. Humming noise. I did have slight feeling like a mild sunburn on opposing cheek after treatment one day. Little one eyed robot lingered there for a while. A slightly numb feeling on the back and to the side of my head that is just now going away. My scalp felt hot for a few days.

I am the biggest coward on the face of this planet and if there was a tiny pain I would tell you. My daughter and I ate extravagant lunches and went shopping after the first two treatments, on the last day I went to the casino with a friend to celebrate. Geez, I worried all those months for nothing.

I have had a few post treatment symptoms. Slight hair loss. Flu like aches that may or may not be treatment related. I have not missed a day of work and now I am riding my horses and enjoying life. 3 month MRI showed dark line through the middle that is possible death to Ivan the Terrible Tumor.

Blessings,

Sandy

[shoegirl]

Hi,

Same story, different person.  Had CK in Dec.  Absolutely no pain. I didn't have the weird smell that Jamie experienced. I found the treatments to be quite relaxing.  Lost some hair that is starting to grow back (sounds worse than it is).  Life is good, just waiting for some signs that the tumor is dying.  Everything is as it was before CK.  Same hearing, same balance, etc.  As far as noise level of CK, it was alot quieter than an MRI/CT - but it is a different machine than Proton.

I hope that your treatments are a success!  Good luck, keep us posted!

[wanderer]

there was a page a year ago listing complications from different options.   Proton showed very high complications.

Perhaps someone else remembers what site it was.   Perhaps it was the seattle An group   or the anarchive