Proton Therapy at Scripps

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dw195
dw195 Member Posts: 43 Member
in Head and Neck Cancer #1

Hello all, I hope to start treatment on January 30th for tonsil and base of tongue HPV+ cancer. I had an enlarged left tonsil which turned out to be cancer and had a tonsillectomy in November. Since then it's been non-stop doctors and trying to decide on the best course of treatment. I'm 54 and in generally good health, enjoy Mt. Biking and Road Cycling as well as hiking. So I really want to be able to keep doing those things in the future.

IMRT was the first treatment I looked at but I'm an hour away from Scripps and their Proton center so after a lot of reading and investigation I've decided to go there. I would appreciate any thoughts from members here, I've read a lot of information from you which I hope will help me going forward.

Yesterday I had the mask made, MRI and then a PET/CT scan. Very long day and a bit scary but so far so good, my next doctor visit is Friday with the Hemotologist to go over chemo options. If my scans come back clean I may not need chemo, so we'll see on Friday. I do have tinnitus so from what I've read Erbitux is the preferred chemo over Cisplatin.

Thank you,

Don

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Comments

  • dw195
    dw195 Member Posts: 43 Member
    edited January 2017 #2
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    Mask Question

    So I had the mask fitting yesterday and the Doctor had me use a mouth piece. My question is should there be a hole cut for the mouth piece to go through? When they fitted the mask the mouth piece is not going through the mask, it made it difficult to hold in my mouth/teeth for that long. Anyone else have the mouth piece?

    Thank you,
    Don

  • armana
    armana Member Posts: 97 Member
    edited January 2017 #3
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    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

     

  • dw195
    dw195 Member Posts: 43 Member
    #4
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    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

     

    Mouth piece hole

    Thank you for replying, good to know about the mouth piece hole. I'll call today and talk to them about it, it took them 3 tries to make the mask fit correctly so I was in masks for over an hour. It started to get hard to hold the mouth piece in place, I understand the actual treatment time will be about 20 minutes so that won't be as bad. Can't wait to get back on my bike!!!

  • dw195
    dw195 Member Posts: 43 Member
    #5
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    CivilMatt said:

    welcome

    dw195,

    Welcome to the H&N forum, sorry that you are here.

    I went the Erbitux route and yes it is with most less stressful on your hearing.

    I had a mouth piece and a hole in my mask as there was a short piece of hollow tube  which I breathed through.  Also, my mask (thank you) had eye holes, which I appreciated.  I did not like the mask, but came to find the whole operation interesting (line-up lasers, noises, rotating).  I also had my oldies rock–n-roll playing.

    Good luck,

    Matt

    Hi Matt

    I was a musician in the 80's so spent to much time on stage in front of loud speakers :-) So I hope to prevent my tinnitus from getting any worse. I appreciate your response, i just had a call from my doctor and my PET/CT/MRI scans came back clean except for one possible lymph node on the left side. He's recommending low dose chemo, I meet with the hemotologist on Friday to decide on what type of chemo and when to start.

    LOL - Now i need to decide on what music to play during treatment. Pink Floyd, Led Zeppelin, Rush, Beatles, Muse will be in the mix for sure!!! I wonder how loud the Proton beam machine is? I was surprised how loud the MRI machine was.


    Don

  • dw195
    dw195 Member Posts: 43 Member
    edited January 2017 #6
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    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

  • armana
    armana Member Posts: 97 Member
    edited January 2017 #7
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    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

    Dental Care

    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

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #8
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    welcome

    dw195,

    Welcome to the H&N forum, sorry that you are here.

    I went the Erbitux route and yes it is with most less stressful on your hearing.

    I had a mouth piece and a hole in my mask as there was a short piece of hollow tube  which I breathed through.  Also, my mask (thank you) had eye holes, which I appreciated.  I did not like the mask, but came to find the whole operation interesting (line-up lasers, noises, rotating).  I also had my oldies rock–n-roll playing.

    Good luck,

    Matt

  • KB56
    KB56 Member Posts: 318 Member
    #9
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    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

    Starting treatment

    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

     

     

  • dw195
    dw195 Member Posts: 43 Member
    edited January 2017 #10
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    KB56 said:

    Starting treatment

    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

     

     

    Thank you Keith

    It's reassuring to hear from someone that has gone through such a similar treatment. I'm so ready to get started!!!

    Thank you,

    Don

  • Trampcycles
    Trampcycles Member Posts: 7
    #11
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    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

     

    Proton therapy

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

     

  • armana
    armana Member Posts: 97 Member
    edited January 2017 #12
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    Trampcycles said:

    Proton therapy

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

     

    My journey

    I had surgery to remove the right tonsil followed by 6 1/2 weeks of IMRT. They gave me radiation on both sides of the neck but twice the dosgae on the side with the swolen lymph node. You can send me a private message for more info if you like.

     

  • dw195
    dw195 Member Posts: 43 Member
    #13
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    Trampcycles said:

    Proton therapy

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

     

    Proton

    I'm starting Proton therapy between now and the 30th of January. The machine is "Pencil Beam Proton" by Varian.

    Don

  • dw195
    dw195 Member Posts: 43 Member
    #14
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    Treatment Plan is ready

    Scripps just called - I start this Wednesday for 35 Proton treatments plus weekly Erbitux. 

    Don

  • Nancy24
    Nancy24 Member Posts: 72 Member
    edited January 2017 #15
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    Husband had proton therapy at Scripps

    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

     

     

     

     

     

  • Nancy24
    Nancy24 Member Posts: 72 Member
    #16
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    Proton Noise Level

    I asked my husband and he said that the proton therapy is relatively quiet.  You only hear a gentle humming noise when the machine moves the beam from left to right around you.

  • dw195
    dw195 Member Posts: 43 Member
    #17
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    Nancy24 said:

    Husband had proton therapy at Scripps

    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

     

     

     

     

     

    Hi Nancy

    Thank you so much for writing. I just completed my first day of Proton Therapy along with Erbitux chemo infusion. It was a long day but everything went pretty smoothly. I started applying Miaderm a few days ago and today after treatment to help with the radiation burn. Dr. Gover and staff are awesome, they were able to fit me in a couple of weeks early due to quite a bit of pain from my tonsil that decided to regrow after the tonsillectomy. I'll look into Gabapentin but hope I don't have too much pain. I'm using salt and baking soda mouth rinses several times a day and have a humidifier going in my bedroom. 

    I'm being a real piggy now and adding on some lbs before my taste buds go wonky. I really appreciate you writing, I read your earlier posts and it was nice to hear from someone else going the Proton route. 

    Don

  • dw195
    dw195 Member Posts: 43 Member
    #18
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    Nancy24 said:

    Proton Noise Level

    I asked my husband and he said that the proton therapy is relatively quiet.  You only hear a gentle humming noise when the machine moves the beam from left to right around you.

    Proton Machine

    The machine was really quiet which is nice. They were really busy today so my appointment was pushed back a couple of hours, then off to Scripps Mercy for the chemo. The mask was super tight which i didn't like but I had taken a Lorazapam and that helped, they did both the simulation and my 1st session so it lasted about 45 minutes. They tell me it should be down to about 20 minutes from here on out. I'm driving down to Scripps from Irvine in Orange County each day so it's about 1-1/2 hours each way. I hope to do that until I maybe the last couple of weeks, This site and posters such as yourself are such a huge help for someone like me just getting started!!! Can't thank all of you enough :-)

    Don

  • SASH
    SASH Member Posts: 421 Member
    #19
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    Tightness of Mask

    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.  

  • Nancy24
    Nancy24 Member Posts: 72 Member
    #20
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    dw195 said:

    Proton Machine

    The machine was really quiet which is nice. They were really busy today so my appointment was pushed back a couple of hours, then off to Scripps Mercy for the chemo. The mask was super tight which i didn't like but I had taken a Lorazapam and that helped, they did both the simulation and my 1st session so it lasted about 45 minutes. They tell me it should be down to about 20 minutes from here on out. I'm driving down to Scripps from Irvine in Orange County each day so it's about 1-1/2 hours each way. I hope to do that until I maybe the last couple of weeks, This site and posters such as yourself are such a huge help for someone like me just getting started!!! Can't thank all of you enough :-)

    Don

    Tight mask

    Great that they started your treatment early!  Less time to think about it. Definitely tell them that the mask is too tight. They should be able to make some modifications. Also, if you feel claustrophobic, ask them to cut out eye holes. My husband also took Lorazapam.  Dr. Grover should offer you the Gabapentin after your first week of radiation.

    My husband is happy to talk to you directly so let me know if you want his email address. 

    Nancy

  • dw195
    dw195 Member Posts: 43 Member
    #21
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    One Week Down

    So I've completed 6 Proton radiation treatments and 2 Erbitux chemo treatments. No real side effects yet, i'm still eating as much as possible. It's tough to get down 3k in calories when you're not hungry. I've gotten over my fear of the mask and have been able to relax the past few sessions. It's made it easier having the treatments in the morning as I don't have as much mucus build up in the morning. I started Gabapentin on Monday also and it seems to be working fine. The 1-1/2 drive is a bit of a drag especially if traffic backs up but it gives me a chance to zone out for a while and not have to think about everything.

    Don

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