Proton Therapy at Scripps

My situation was very similar to yours. I was diagnosed with stge III tonsil cancer that had spread to one lymph node august 2014. I also share the love of cycling and mountain biking with you. I finished 6 1/2 weeks of IMRT with no chemo Nov 20th 2014 and been cancer free since. I was back to my new normal about 2 months post radiation. The only side effects I currently have is dry mouth that has improved over time. I think everyone uses the mouth piece and they cut a hole in the mask for the mouth piece.  good luck

dw195 said:

Erbitux it is

So I'll be taking weekly Erbitux along with Proton Radiation, I'm ready to get started and get throught this. I'm currently scheduled to start the 30th but they are trying to fit me in earlier. It seems a lot of people wanted to wait until after the holidays to start treatment. They gave me a stage III for the tumor but as it's HPV-16 it should be respond quickly to Chemo/Radiation. I've read through this site and want to thank everyone for their input, it really is helpful to those of us that have just recently been diagnosed and are searching for information and answers.

Don

Check out the following site for long term dental care

https://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/OralComplicationsCancerOral.htm

You will be in my prayers. Please keep us posted

Arman

dw195 said:

Erbitux it is

So I'll be taking weekly Erbitux along with Proton Radiation, I'm ready to get started and get throught this. I'm currently scheduled to start the 30th but they are trying to fit me in earlier. It seems a lot of people wanted to wait until after the holidays to start treatment. They gave me a stage III for the tumor but as it's HPV-16 it should be respond quickly to Chemo/Radiation. I've read through this site and want to thank everyone for their input, it really is helpful to those of us that have just recently been diagnosed and are searching for information and answers.

Don

Don,mine was very similar to yours (tonsil and lymph nodes) and I had 34 radiation treatments and 7 weeks of Erbitux.   The radiation was pretty rough but other than acne/ really bad skin rash, the Erbitux wasn't too bad and much less side effects than other chemo options.  I never had a mouthpiece but really didn't have an issue with the mask.    You'll get used to the sounds of the radiation machine and will be able to know about how much time you have left after you've had a few treatments  

This site is an awesome resource and the people are incredible.    You'll have some rough times along the way but when you look back it's really a distant memory    The HPV based cancer is so treatable and so responsive just stay positive and know you will be fine long term.   I'm 3.5 years past treatment and doing great, just as you will be after a few months    Recovery takes a bit of time but the human body is amazing in its ability to repair itself over time once you stop treatment.    

good luck 

keith

armana said:

My journey

My situation was very similar to yours. I was diagnosed with stge III tonsil cancer that had spread to one lymph node august 2014. I also share the love of cycling and mountain biking with you. I finished 6 1/2 weeks of IMRT with no chemo Nov 20th 2014 and been cancer free since. I was back to my new normal about 2 months post radiation. The only side effects I currently have is dry mouth that has improved over time. I think everyone uses the mouth piece and they cut a hole in the mask for the mouth piece.  good luck

 

Did you have proton radiation Armana? It sounds as if your experience was exceptionally positive.

Perhaps you have already done some searching on this site and read my posts but in case you haven't....my husband had Stage IV hpv+ cancer in his left lingual tonsil at the base of his tongue that had spread to lymph nodes on left side of his neck. He did not have surgery. We relocated to San Diego so that he could have 35 proton beam radiation treatments at Scripps plus 7 Cisplatin chemo treatments. His radiation oncologist was Dr. Grover who we liked along with his nurse Karen. His last treatment was August 30 and his PET scan in December showed no signs of cancer. YAY!!  He never felt any pain.  Dr. Grover started him on Gabapentin at the beginning of his treatments, ramping up the dosage so that by week 3 he was at the full dose.  He rarely took OxyContin.  He also took other Meds but I can't remember them at the moment.

The radiation techs loved my husband because he introduced them to lots of music they'd never heard before so change it up each week :-)

My husband did not have a feeding tube but he did lose 30 pounds. His taste was impacted starting around week 3.   I can't remember when the dry mouth started.  He did have some pretty severe radiation burns on the left side of his neck so ask on this site and ask at Scripps for advice on what to use and when and be proactive on applying ointments. He basically drank smoothies for the last four weeks of treatment and for one additional month (two months total). He's been eating regular food ever since. Some things taste normal, some don't. The bigger issue issue is dry mouth even though proton therapy spared the saliva glands in the bottom front of his mouth.  He's learned to sip water as he eats.  Amazingly he has recently been able to play his harmonica.

You are in good hands at Scripps.  I wish you well and feel free to contact me if you have any questions.  Oh - ask to meet with a speech therapist to get swallowing exercises.

 Nancy

The mask has to be tight to keep your head from moving.  If you find that it is extremely uncomfortable, talk to the techs about it and they might be able to cut away part that covers your face. This is how mine was made so my entire face was exposed which helped in not feeling claustrophobic.