Proton therapy side effects?

Hey! I don't have a ton of good advice to offer because I had traditional radiation. I also did not have chemo. I have a daughter who is now 2, but was 11 months when I started Rads. After about 2 weeks of radiation I was not able to care for her myself. We had a friend come to oyr home while my husvand was at work to watch her. I basically went to treatment & then came home & slept the rest of the day. I did a quick search for proton radiation & it seems that this type is better at targeting the cancer while minimizing damage to surrounding tissue. I was in quite a bit of pain although I managed with hydrcodone, magic mouthwash & liquid lidocaine. I never had a feeding tube although eatibg was my least favorite thing to do by the end of treatment. It sounds like your Drs are giving you a great treatment option & I hope that its successful & that you're still able to manage during treatment. I guess whether or not you are able to care for your kids will depend on how old they are & how treatment affects you. Do you have any family that could come & stay with you during treatment to take some of the load off of you?

i do not know anything about proton therapy or the side effects

i do know however, you are going to one of the very best hospital's with MD Anderson in the word. i sugest getting confortable with your doc's and go with their experience and knowledge.

prayers going out that it all works well for you and your three gorgeous kids(bears) 

john 

jedsnearlythere said:

So helpful

Thanks so much everyone. The general consensus that I should figure out some help for about 2-3 weeks in confirms what I was thinking myself. Its really helpful to have that reinforced- thanks. And John, thank you for explaining in detail your journey with rads esp. It sounds like you handle platinum a bit better than I which is a helpful mirror to look into. 

Your prayers and your kind wishes, as you guys all know are so welcome at cancer time

when you're facing a threat to your very existence, you can never underestimate the healing power of another human being saying to you I'm routing for you. I'm behind you and I want you around. Even though I don't know you from Adam. Powerful. 

i'm ready. And you helped. Aren't you all awesome??? Yes you are. Be well my lovely cancer friends thank you for helping me.

Glad you found our site but sorry you had the need. I had an appt. to go to MDA for proton therapy (original cancer in jaw 01/2012 and now recurrance in carotid cavity) but ended up chosing the Mayo Clinic in Rochester, MN. for SBRT tx. I did some research and my doctor at Mayo spoke to the doc at MDA to see if they thought one tx was better for me than the other.  Basically, the SBRT was only 5 days, targets the tumor and then drops off quickly where proton therapy hits the tumor and stops which gives little in the way of residual damage to surrounding good tissue. 05/2012, I had 7 weeks of traditional radiation and the side effects were pretty hard on me. I believe MDA also does SBRT so if that was the best option for you, I'm sure they would have discussed it. Side effects for me this 2nd go around have been minimal. I finished tx last Friday.

Prayers for you and your family

Candi in St Louis

jedsnearlythere said:

So helpful

Thanks so much everyone. The general consensus that I should figure out some help for about 2-3 weeks in confirms what I was thinking myself. Its really helpful to have that reinforced- thanks. And John, thank you for explaining in detail your journey with rads esp. It sounds like you handle platinum a bit better than I which is a helpful mirror to look into. 

Your prayers and your kind wishes, as you guys all know are so welcome at cancer time

when you're facing a threat to your very existence, you can never underestimate the healing power of another human being saying to you I'm routing for you. I'm behind you and I want you around. Even though I don't know you from Adam. Powerful. 

i'm ready. And you helped. Aren't you all awesome??? Yes you are. Be well my lovely cancer friends thank you for helping me.

Prayers each day!  I pray for my entire CSN "family" every single day  I'm also a homeschooler, but when I was going through treatments, my 16 year old just kept up with things online and his older brother helped out some.  Our second semester last school year was a little pitiful, but we had the summer to catch up...one of the many advantages of homeschool!  

Take care and I'll pray that your treatments aren't too bad and they go by quickly!  Keep us posted.  The people on here are SO helpful and kind.  They got me through my treatment and helped me more than they'll ever know

yensid683 said:

A friend of mine experience Proton Therapy

but for prostate cancer.  He and I spoke before I started IMRT (SCC BOT, stage IVa) and he highly recommended it.  He discussed the very finely targeted effects and the mimimal (compared to IMRT) exit radiation and surrounding tissue damage.  He did not, as I recall, mention having chemo though.

He did say that he experienced fatigue, and would take walks along the beach (lives in Jacksonville FL) and it would help.  He was off of work at the recommendation of his medical team, but he said that the treatments were not debilitating. 

Compared to my experience, his was a cake walk.  I had 33 IRMT treatments that caused a sore throat that I described as similar to a freshly skinned knee, dragged over hot crushed glass and then mopped with a couple of coats of fire. 

One round of induction chemo (cisplatin caused kidney failure), 33 rounds or IMRT with weekly chemo (erbitux), three months off and then a selective neck dissection to remove several nodes that lit up on the scan.  Rads finished July 5 of 2012 and I've been back to work for a year now, am back to all my normal activities - I played 18 holes yesterday, walking the course and carrying my clubs, saliva is around 60%, I can eat just about anything and things are looking good.

I hope all turns out well for you, thoughts and prayers coming your way.

Peter

I can't personally say, and I'm far from a professional...

But I do know that it's been stated many times, and from my exposure, that H&N Treatment (especially radiation), is brutal...

I can't help but believe that most any radiation the the H&N is going to be brutal...

Unless Proton is extremely new, it would be offered to everyone..., other limiting factor also could be expense.... So I guess unless you were a millionaire, most couldn't afford it.

My treatment, before insurance, etc... was $275, 000..., about half of that being the IMRT and radiation portion.

JG

I had Proton Therapy for a recurrence of Tonsil Cancer - Last two PET Scans show that it worked.   

Proton Beam Therapy is Much less damaging than radiation ( had that last time ).  Its the way to go - provided your insurance covers it - for some conditions  Proton Therapy is deemed experminetal and therefore not elegible for coverage.

I was able to drive myself to treatment ... began to notice side effects around 4 weeks after treatment ended. 

I still experienced Trismus and Mucousitis thou not as bad as last time.  

Currently I have a nasty radiation burn in my tonsil area - causing much discomfort.  But I can deal with that rather than something much worse.

Good luck to you !  

jedsnearlythere said:

Update

hello chaps,

 

just wanted to check in and share my treatment outcomes.

 

As you all (mostly) advised the treatment was indeed brutal especially at the end. I very nearly checked out bout five times due to complications, but I was told my regimen was all guns blazing apparently.

I am back in Houston for my first set of twelve week scans, post treatment end and I found out yesterday I am NED. It is all gone. Every last bit. HOW COOL IS THAT!!!!!!

 

Can't even describe how I feel - just wanted to share the encouraging news.

I'm still on the mend and have hit some funny complications but on the whole I'm up and around, beginning to taste a bit etc. will write more later. When I've stopped crying!!

 

Thanks again chaps lots of love xxxx

jed, NO CANCER!  what a great feeling!  we definitely understand how estatic you are and we share in your happiness!  i'm sorry you had complications and so glad you made it thru, how scared you must have been.  I'm very glad that's in your rear view mirror now and you're doing much better.  it is awesome that you can already taste some stuff!  it seemed like forever before I could taste.  It was many months for sure.  You sound like you are doing just great.  keep up the great healing and keep us posted on your healing.

God bless you,

dj

wmc said:

Welcome

Welcome and best of luck. I didn't have any Rad or chemo so can't help there. I always have extra prayers for someone going through this. Mine was surgery only SCC of the larynx T3 N0 MO.

Bill

Bill, my dx only said, "T3" but yours has NO MO, what does that mean.  I've noticed everyone else's dx show those letters also.  just curious.

dj

jedsnearlythere, i gave my friend, PJ, your name.  she is going to join us here as a member and contact you.  her husband, Mel, had the same cancer you've got, i think.  i know he lost his nose.  she is a very kind and helpful person and will help you as much as she can.  she was Mel's caregiver so she knows all that he went thru and any complications he may have had.  feel free to ask them anything, they are glad to help and share their knowledge.

God bless you,

dj