Proton Therapy

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 said:

You know, I keep hearing from

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.

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 said:

That would be amazing!! I

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!

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

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

kimnavarette said:

You know, I keep hearing from

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.

Kim,

what insurance did you have?  Maybe it's the tumor kind and location are reason for approval?

Kathy

Hi Kim.

What a difficult time for your family! You are in my prayers. It's great that you were able to get proton therapy for your son. From what I've read, the success rate is good and there are minimal side effects. It sounds like boredom is the main one in your situation! Here are some ideas. Check with the social worker at your hospital for suggestions about nearby activities. You may get discounts through the hospital. Maybe there's a park where you could play basketball. Lots of parks even offer summer activities and swimming for kids at a low cost. Get a sketch pad and some colored pencils so your son can use his imagination. Pick up some interesting books to prevent summer back slide in reading level. You can find recommendations online. Try the dollar store for some cheap toys like plastic bubbles, airplanes, yoyos, or activity pads. Have your son send his siblings and grandparents postcards or his sketches showing places you've seen. It'll help them feel more connected. Get a huge puzzle to work on at night in your room. Pinterest also has good ideas for kids. I hope these ideas help!