Tonsil cancer/IMRT vs. Proton Therapy

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RE: Tonsil cancer/IMRT vs. Proton Therapy

by Dlynn1210 on Mon Aug 31, 2015 06:35 PM

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The thread was started in Aug 2014 so the husband of the woman who started it has already completed treatment.  She has not posted since Oct 2014 - people often drop off once treatment is completed. 

I am always interested to hear about anyone who has undergone proton therapy because I would like to know long term results.  I had TOMO radiation and have tremendous salivary production today.  This is why I advocate for TOMO over IMRT for tonsil cancer.  I am cancer free eight years after being diagnosed.  I had a PEG tube for a year but once I was able to swallow sufficiently, it was removed and I have never had any problems as a result.   Proton therapy holds promise but I would like to hear more long term results.  All of us want to see less side effects while ridding us of cancer. 

Diana

RE: Tonsil cancer/IMRT vs. Proton Therapy

by ebennet on Mon Aug 31, 2015 08:57 PM

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Hi Diana -- So glad to hear you're doing well. You're right -- I have not posted in awhile however a few people have contacted me privately about proton therapy and I've tried to provide answers whenever I can. My husband completed treatment almost a year ago. He's doing very well and all follow-ups have been great. The treatment was rough-- especially the last week and two weeks following -- but he was able to continue eating on his own throughout and didn't lose much weight. He avoided pain meds not because he's a stoic but rather because of the constipation. In the end though he needed them. He has no other long term effects from his radiation. I know a woman who is being treated at UPenn with proton radiation for head and neck cancer and they are giving her gabapentin as a sort of nerve blocker. As of a few weeks ago it was working well. As to the long term efficacy of proton radiation vs other forms of radiation, there is one study from the Mayo Clinic which concluded that the long term outcome for head and neck cancer was better for patients receiving proton radiation over IMRT. I am including the link to a summary of this study. Unfortunately private insurance has not come around and the companies are denying coverage on the basis of it being "unproven." Under the terms of our policy coverage exists for the same cancer my husband had where the patient is 18 or younger. I guess the rationale is that avoiding damage to critical structures in the head area is more important for young patients (but it also seems to be an acknowledgement that it is effective). Also in many states Medicare covers proton therapy for head and neck cancer. In my view it's just a matter of time before proton radiation becomes the standard treatment, just as IMRT once replaced CRT.

http://newsnetwork.mayoclinic.org/discussion/proton-therapy-

RE: Tonsil cancer/IMRT vs. Proton Therapy

by Dlynn1210 on Tue Sep 01, 2015 12:15 AM

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I know TOMO was a huge improvement over IMRT for tonsil cancer.  As the head of radiology at Sitemann in St. Louis told me, for moving organs, she would recommend IMRT but for nonmoving organs like tonsil she would definitely go with TOMO as it is more precise.  I always recommend TOMO over IMRT but mention proton therapy to those recently diagnosed as a newer treatment.  Trying to decide on a treatment when we feel like deers in headlight is a bad start to something that is going to get even worse. 

I am glad to hear your husband is doing good.  Thank you for the link - we never know when something like this will benefit someone now or in the future.

Diana

RE: Tonsil cancer/IMRT vs. Proton Therapy

by Cortni on Thu Sep 03, 2015 09:42 PM

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On Sep 19, 2014 10:11 PM goldhorse9 wrote:

A agree with the above comments. When I first relaized someting was wrong I went to my family MD and he prescribed antibiotics. After a week of my tonsil not looking right I knew it was someting more. The next guy was a local ENT and thought it was something else and benign and was going ot schedule me for a biopsy and if the biopsy was bad he would just cut it out while I was asleep. Bad idea !! Next local ENT was refered to me by a cardiologist friend. He said it was nothing but took a biopsy while I was under local anastesia. A week later I got the call. Tonsil Cancer. He schedule me to cut it out at a local hospital. I decided to call another friend who knew a Suregeon at MD Anderson and he call me and siad I was crazy if I didn't drive down to Houston and have the MDA guys look at me. I did and I went through IMRT and Erbitux (baby chemo). I was Stage 2 and it's been just over 5 years and I'm all good. I turn 60 this year with 4 children from 3 marriages - my youngest is a 7 year old boy. Isn't life rich? I can't tell you how happy I am and how much I appreciate every day. I saw a lot of bad stuff at MDA. The IMRT is brutal - no doubt !!!!!!!!!!!! It's crazy bad. But what's even more crazy is 5 years later I can harly remember and all I can focus on is my family and lovved ones. It's so awesome to appreciate every day and every loved one with a new perspective. Good luck to you. You will make it just fine - just make the right choices. Error on the side of a cure - your body will heal.   

goldhorse how was the erbitux? I'm at MD Anderson too and getting ready to do Radiation and Erbitux. 

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