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Proton Therapy

kimnavarette
Posts: 19
Joined: Dec 2013

Just got back here after a few week absence. My 10 year old son has completed 10 proton radiation sessions so far.  Wondering if anybody on here can tell me how bad the side effect may be? I've read all the literature from the proton Center, but wanted to come to my own experts :-)

 

So far we have seen no side effects. Although, he did have a migraine last night. He has had migraines since he was 3 years old. Watching to make sure this is not a side effect of the radiation. Trying to understand if all of the side effects I have read about on here will happen to a proton radiation patient.

 

Thanks for all the support through the beginning part of our journey. Now we are going through a separation of our family for the six weeks of radiation treatment. Treatment is in Houston, we live in Ohio. I did the first two weeks, now my husband is with him for the next two weeks. Praying the six weeks goes by fast. We have 3 children at home so it is hard on everyone.

 

Thanks!

Kim

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

 

I can’t help on the Proton as I took the old style Radiation, but I hear a lot of good about the Proton. My sisters husband is at MD Anderson doing Proton, he is about 4 weeks into his treatment and doing fine, that is about all I know. I feel your pain and just want you to know you and your family will be in my prayers.

 

God be with you

Hondo

PJ47's picture
PJ47
Posts: 334
Joined: Sep 2013

At Hampton U. Proton Therapy Institute and the Radiation Oncologist advised that there would be greater sparing of collateral tissues but that I would experience  side effects similar to the IMRT therapy.  Often  the best choice for children as longer term side effect are less and brain, eyes, hearing, spinal cord and brain stem are normally spared.

 He was planning 7 weeks at 66 Gy 1.8 fractions.  Depends on the amount they are giving.

My insurance co. denied payment saying it was experimental which it is not, but there have not been many clinical trials to prove its efficacy for head and neck cancer.  MD Anderson was doing a clinical trial and I sent info to them but I had a 50/50 chance of being chosen for the Proton instead of the Photon radiation therapy, so I stayed local.  It must be very hard to be away from the family for all of you.

Hope he does not have any  severe side effects.  Did they suggest a feeding tube?  Prayers to you and your family.

PJ

kimnavarette
Posts: 19
Joined: Dec 2013

You know, I keep hearing from people at the Proton Center about how hard it is to get insurance companies to approve Proton. Mine took a couple of days but didn't even blink. We are so grateful! The Dr did tell us that "back in the old days" (which he describes as 7-8 years ago) they dropped a feeding tube into the kids getting rads on the first day they arrived. Now they find more than half (getting proton) don't need it so they wait and see.

The other interesting thing was they asked us to sign a release before we started treatment for my son to be a part of the study to evaulate the use of Proton and side effects while monitoring long term survival rates and future cancers. They said they will follow these patients for a number of years.

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

Initially I had IRMT and the expected side effects. I then had a recurrence around my carotid artery so I investigated MDA proton therapy and Mayo Clinic SBRT. It's my understanding that the purpose of both is to lessen side effects and collateral damage. It certainly makes sense. Ultimately, I chose Mayo and the SBRT. I virtually had no side effects. I was told that I might have a sore throat but, at most, were a day or two where I thought I might be getting one but it never materialized. Since I originally talked with Mayo and MDA, they consulted and did not feel one tx had benefits over the other, however, Houston was 7 weeks and Mayo 5 days. I live in St Louis so both were away from home. I believe proton therapy has more percise stopping ability once it reaches the targeted tumor. I am happy to say, I had no side effects and the targeted tumor around the carotid is gone! I do have one on the other side that I will be having treated soon too. With what I researched and what I experienced, I would not expect your son to experience anything close to the side effects of IRMT...thankful for that. 

So sorry to hear that your son is affected by this at such a young age. Sending prayers.......

Candi

kimnavarette
Posts: 19
Joined: Dec 2013

That would be amazing!! I pray that he has minimal to no side effects, but as a Mom I worry every time he looks at me cross eyed! I think it would be hard enough as an adult to understand these effects and live with them. When you are 10 the tolerance for anything outside of being allowed to be a wild, crazy 10 year old is tough! He did the first 5 treatments and announced he was done with treatment because "I already did that!"

 

No side effects would be such an amazing blessing. Now if I can just keep the kid from climbing the walls from lack of activity we will be golden! I bought a Houston City Pass to take him to the major attractions around town. But for him the lack of school and his 3 sisters constantly around makes the silence deafening :(  Gabe is a triplet and is not used to any alone time!

 

Thanks for the perspective Candi! I find it odd as I read through the threads and I don't find a majority of people using Proton. I know some have completed treatment awhile ago, but MD told us they have been using it for about 6 years in head and neck cancers. Where are all of those people on this board? I would love to hear from some more of them!

longtermsurvivor's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

Even for MDA.  The majority of MDA's patients are still treated with IMRT, not proton.  So although they and others have been using proton for about six years, its still the minority thing.  There's another poster on the board, initogether (her post is a ways down the board) who's husband is receiving  IMRT at MDA right now.  My bet is they assigned this treatment to your son  because of age, and  the attendent problems with a larger treatment field over time.  It's great treatment, and as you've heard, side effects tend to be less. Houston has a great public library system, with a branch likely near you.  And weather that should permit your child to get outside a bit, even in the winter.  I'm sure the trip is boring as heck to him.

 

Pat

KTeacher
Posts: 950
Joined: Jan 2011

I don't know anything about Proton Therapy but if it is anything like Cyberknife, it was nothing side effect wise compared to IMRT.  I did have fatigue for 2 weeks after Cyberknife.  Are you able to stay at something like Ronald McDonald House while in Texas?  My sister volunteer's at RMH in Palo Alto, CA and there are many wonderful, supportive things happening at the house.  Thank you for signing a release for a study.  You (and your son) will be helping many children in the future.  So sorry that your family is having to go through this fight. 

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

kim, i don't know about the proton but wanted you to know I am praying for your son and for very few, if any, side effects.

God bless you,

dj

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

Tripletts, how wonderful! Having been through IRMT and then SBRT (targeted like proton) and seeing the huge difference in side effects, I couldn't help but ask if I would have been a candidate for SBRT or proton the first go around, had I known about it. I was told definitely not. I am guessing that is why you don't see many posts about it. I was only a candidate on my recurrence because it is one specific spot that they were targeting. My original cancer, in the jaw, was too large of an area for anything but IRMT. Normally, they won't do IRMT twice but they can do targeted tx more than once, just not in the exact same spot. Hope this is making some sense.  Because of the theory behind it and the pinpoint radiation, along with my personal experience, I am very optimistic that your son won't encounter much in the way of side effects. I had two sisters with me at Mayo and we spent much of our time visiting the sights, going to the movies, eating out and shopping. Maybe your son would enjoy the new Lego movie, I hear it's pretty good.

Keeping your family in my prayers

Candi    

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