Proton Radiation for base of tongue HPV+ at Scripps in San Diego, CA

twinklepigs
twinklepigs Member Posts: 11
edited October 2015 in Head and Neck Cancer #1

Hello all...it's my first post on here but I wanted to post because I thought our experience might be helpful to others and I have gained a lot of support and information on here as well. If you are reading this then I assume your life has been touched by cancer either as a patient or loved one and I'm sorry for that but hang in there!! My husband was diagnosed with SCC base of tongue cancer as the primary with a spread to lymph nodes on right side and HPV+. We went to St. Judes, Hoag Hospital and Scripps. All three doctors suggested chemo and radiation for treatment. We chose to go to Scripps in San Diego, CA as they have a Proton Beam machine and we were good candidates for the treatment. We did chemo and radiation together...7 weeks of chemo (low dose of cisplatin once a week for 5 hours) and 7 weeks (35 treatments) of proton radiation. We now only have 3 radiation sessions left which means we are done Tuesday and can finally go home!!!!!

My husband has held up so incredibly well, not sure if it's all the products we used or the protons as opposed to traditional radiation or what. We all respond to cancer treatment in our own way and it just depends how you will get through it. My husband did not get a feeding tube, he did not get mouth sores, he did not lose all his saliva but there is dryness and his skin is red and burned but not to the point of open sores. He does have nausea from the chemo which we keep relatively controlled with meds but he still doesnt feel good :-/ He can still eat and swallow but definitely lost his taste which we hear should return someday? If you are interested about the products we used or have questions about how the Proton Radiation treatment was I'd be happy to correspond. We get a PET scan in February to see where we stand so I don't actually have an conclusion to the story yet but I might be able to help with any anxiety you have about treatment. I am not an authority on the subject or anything but there's not much info available directly from those who have tried Proton Radiation and I thought it could be helpful. Almost done and the 7 weeks went by realtively fast!!!! Keeping our fingers crossed and praying that it worked!

 

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    #2
    Thank you

    for posting and sharing your experience. Proton beam is being recommended more and the doctors are learning more about it, so adding your experiences will increase everyone's knowledge base. In a way you are pioneers which allows the field to advance. We considered proton beam radiation, but the volume of the area that needed to be radiated made the traditional IMRT X-Ray a better choice for us. I'm glad the side effects haven't been too bad for you and I have my fingers crossed that you will have a successful outcome.

    Barbara

  • wmc
    wmc Member Posts: 1,804
    #3
    Welcome to the H&N Group

    Welcome to the H&N Group and sorry you need to be here. I am glad you posted and shaired your story.

    I am two years out with surgery only but they gao it all and never needed chemo or radiation. Mine was SCC of the larynx and they took out 86 lymph glands as a precaution. There has been several here that did proton radiation. The treatment has come a long way in just the last several years. Glad your husband is doing well. It is very hard on the caretaker as well.

    Bill

  • twinklepigs
    twinklepigs Member Posts: 11
    #4
    wmc said:

    Welcome to the H&N Group

    Welcome to the H&N Group and sorry you need to be here. I am glad you posted and shaired your story.

    I am two years out with surgery only but they gao it all and never needed chemo or radiation. Mine was SCC of the larynx and they took out 86 lymph glands as a precaution. There has been several here that did proton radiation. The treatment has come a long way in just the last several years. Glad your husband is doing well. It is very hard on the caretaker as well.

    Bill

    Thank You WMC

    I always wonder why some get surgery and some get chemo/radiation. Glad you are 2 years out from your surgery. Was the recovery very difficult? Yes...it's good to be on here sharing as we did not share his diagnosis with friends and family. We had to travel for the treatment so everyone just assumes we are out of town. I was very afraid about being able to take of him but he did his part and I did mine and...well...we're almost done...thank God! 

    I hope that many more people have Protons available to them if they would like to take that route as it seemed to have a little gentler touch on the patient.  It's hard to say becasue we don't have anything to compare it to but we feel happy with our choice and feel that it was worth the 8 weeks away from home. We're not out of the woods yet as he still has 3 more radiation treatments, has a sore throat, a burned neck and is exhausted and nauseaous - but we feel grateful to have received treatment. Thanks for the welcome to the group WMC!

  • twinklepigs
    twinklepigs Member Posts: 11
    #5
    Barbaraek said:

    Thank you

    for posting and sharing your experience. Proton beam is being recommended more and the doctors are learning more about it, so adding your experiences will increase everyone's knowledge base. In a way you are pioneers which allows the field to advance. We considered proton beam radiation, but the volume of the area that needed to be radiated made the traditional IMRT X-Ray a better choice for us. I'm glad the side effects haven't been too bad for you and I have my fingers crossed that you will have a successful outcome.

    Barbara

    Proton Candidates

    Hello Barbara,

    You know what's funny? Our radiation oncolgist at Hoag said we were not good candidates for Protons so it just goes to show you how invaluable it is to get second and third opinions to see what all your options are. We called Loma Linda and they said that their Proton machine could not deliver enough Protons to a cancer that has spread but to try Scripps in San Diego and sure enough, they took our case! Looking forward to sharing and possibly helping others discover Proton Radiation as an option :-D

     

  • wmc
    wmc Member Posts: 1,804
    #6
    twinklepigs said:

    Thank You WMC

    I always wonder why some get surgery and some get chemo/radiation. Glad you are 2 years out from your surgery. Was the recovery very difficult? Yes...it's good to be on here sharing as we did not share his diagnosis with friends and family. We had to travel for the treatment so everyone just assumes we are out of town. I was very afraid about being able to take of him but he did his part and I did mine and...well...we're almost done...thank God! 

    I hope that many more people have Protons available to them if they would like to take that route as it seemed to have a little gentler touch on the patient.  It's hard to say becasue we don't have anything to compare it to but we feel happy with our choice and feel that it was worth the 8 weeks away from home. We're not out of the woods yet as he still has 3 more radiation treatments, has a sore throat, a burned neck and is exhausted and nauseaous - but we feel grateful to have received treatment. Thanks for the welcome to the group WMC!

    Thanks twinklepigs but I had no choice.

    My reason for surgery is a little different than most. First I wanted the tumor removed as it was pressing on my left vocal cord. I had lost weight and coughing up blood by ounces. Now I had other problems. I am stage 3 COPD and my lungs are bad. I met with the tumor board and my doctor came in and said I would not survive radiation or surgery because of my lungs. The only way they would do it was if I had my larynx removed and I breath out my neck the rest of my life. Not the best chois but it was all I had so as I am here you know I said yes. Only five people thought I would make it and I was one and the doctor and wife with two friends at work. We had 250 emploies and only two believed. My brother never thought I would. They were afread that they could not keep me breathing for the 8 hour surgery un less I had a trach which is a stoma when it is permanent. It is life changing but they put in a prothesis that will let air in my throat so I still can talk with my voice. I just sound like I have a cold and have a filter that covers the hole. They also did a neck dissection on both sides and removed 86 lymph glands as a precaution. I feel I was lucky as I did my research and picked the doctor I wanted and with the wrinkle with my vocal cords I got lucky. They got it all, and them some so I never needed chemo or radiation. I had to learn to swallow, eat, and talk all over, but it went well. I was back at work in 10 weeks. Five months later my emphysema got a little worse so I had to retire. When I woke up from the surgery I wrote the nurse, am I in ICU. She said no, you are in your room. I knew then I was fine as most go to ICU for a few days.  You see I feel that I had it so much better than so many did. I feel I am lucky and was given a second chance on life. Everyone who survives cancer see's life a little different now. In a strange way, it was a blessing. I can breath better, and I have been able to help others in my volunteering. This site is special to me as so many here got me through some dark times as I adjusted. I am very active with the WebWhispers, which is a world wide group for throat cancer and are  Laryngectomee's. I have given talks to high schools on anti-tobacco and trying to keep some from starting, so i'm very lucky and do relize it. For me it time to pay back for others.

    Proton is very good but it only will work if the tumor is in certain places. The doctors have to treat everyone a little due to how large, where it is, and what other conditions the person has. The sore throat is very comon. Just sip water and keep it most and hydrated. It will take some time and the clock is a slow one. He will still be cooking inside for a few weeks after. Just one day at a time, and it does get better.

    Bill

  • twinklepigs
    twinklepigs Member Posts: 11
    #7
    wmc said:

    Thanks twinklepigs but I had no choice.

    My reason for surgery is a little different than most. First I wanted the tumor removed as it was pressing on my left vocal cord. I had lost weight and coughing up blood by ounces. Now I had other problems. I am stage 3 COPD and my lungs are bad. I met with the tumor board and my doctor came in and said I would not survive radiation or surgery because of my lungs. The only way they would do it was if I had my larynx removed and I breath out my neck the rest of my life. Not the best chois but it was all I had so as I am here you know I said yes. Only five people thought I would make it and I was one and the doctor and wife with two friends at work. We had 250 emploies and only two believed. My brother never thought I would. They were afread that they could not keep me breathing for the 8 hour surgery un less I had a trach which is a stoma when it is permanent. It is life changing but they put in a prothesis that will let air in my throat so I still can talk with my voice. I just sound like I have a cold and have a filter that covers the hole. They also did a neck dissection on both sides and removed 86 lymph glands as a precaution. I feel I was lucky as I did my research and picked the doctor I wanted and with the wrinkle with my vocal cords I got lucky. They got it all, and them some so I never needed chemo or radiation. I had to learn to swallow, eat, and talk all over, but it went well. I was back at work in 10 weeks. Five months later my emphysema got a little worse so I had to retire. When I woke up from the surgery I wrote the nurse, am I in ICU. She said no, you are in your room. I knew then I was fine as most go to ICU for a few days.  You see I feel that I had it so much better than so many did. I feel I am lucky and was given a second chance on life. Everyone who survives cancer see's life a little different now. In a strange way, it was a blessing. I can breath better, and I have been able to help others in my volunteering. This site is special to me as so many here got me through some dark times as I adjusted. I am very active with the WebWhispers, which is a world wide group for throat cancer and are  Laryngectomee's. I have given talks to high schools on anti-tobacco and trying to keep some from starting, so i'm very lucky and do relize it. For me it time to pay back for others.

    Proton is very good but it only will work if the tumor is in certain places. The doctors have to treat everyone a little due to how large, where it is, and what other conditions the person has. The sore throat is very comon. Just sip water and keep it most and hydrated. It will take some time and the clock is a slow one. He will still be cooking inside for a few weeks after. Just one day at a time, and it does get better.

    Bill

    Love it!

    Sounds like you went through some tough times but it's stories like yours that let other people know that it's going to be ok. Thank you so much for sharing. It's good to know that people can get through these types of surgeries and be grateful to be alive!!! Makes me a little less anxious about PET scan in February. Good for you WMC! Your story is very inspiring!

  • Barbaraek
    Barbaraek Member Posts: 626
    #8
    twinklepigs said:

    Proton Candidates

    Hello Barbara,

    You know what's funny? Our radiation oncolgist at Hoag said we were not good candidates for Protons so it just goes to show you how invaluable it is to get second and third opinions to see what all your options are. We called Loma Linda and they said that their Proton machine could not deliver enough Protons to a cancer that has spread but to try Scripps in San Diego and sure enough, they took our case! Looking forward to sharing and possibly helping others discover Proton Radiation as an option :-D

     

    Individualized tx is definitely

    the way to go. You have to find what works best for your unique situation. in our case we consulted with experts in Boston, Chicago, Houston and via fax and phone Hong Kong - where nasopharyngeal cancer is more common than here in the USA. No matter what you end up choosing, you want to feel like you made the best choice for your situation...I would encourage everyone to get a second opinion, especially if you are in a more rural area without a major hospital or comprehensive cancer center.

    barbara

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