Proton Beam therapy

dalaitom
dalaitom Member Posts: 27 Member
in Head and Neck Cancer #1

Right side tonsil cancer SCC, HPV+, stage IVa N2,  no evidence of distant metastasis, both tonsils have been removed, no neck dissection. The plan is for 7 weeks radiation and 3 cisplatin treatments and then possible neck dissection.

It looks like I may have the opportunity of getting proton beam therapy. I will be having a consult with the radiation oncologist at that facility in the next week or so. That doctor specializes in treating HN cancers with the proton beam.

I am aware of all the benefits of the proton beam not affecting nearby tissue. However, I see where they sometimes still administer radiation therapy to cover the lymph nodes on both sides of the neck. I've read JAL23's journey and found some encouragement there but the limited search function here seems to limit finding the threads of those who have undergone proton therapy. A search by title of "proton" yields only one page of results, all of which I have read. A keyword search yields numerous pages of mostly irrelevant results for my situation. And when I see a name that says they used proton therapy, there doesn't seem to be a way to find all that person's posts in order to follow their journey.

So basically, I am wanting to hear from anyone that had proton therapy and their side effects and ultimate results. Also, I'm making a list of questions for the proton oncologist and would like any suggestions from someone whose been through this procedure about questions they wish they would have asked beforehand.

Thanks.
Tom

Comments

  • LynnBin
    LynnBin Member Posts: 5
    #2
    Proton Beam Radiation Therapy - reply

    Tom:  I finished proton radiation (w/ Cisplatin) treatment March 2, 2018.  I live in Ct; had to relocate to N.J. for treatment at ProCure Proton Therapy in Somerset N.J. - my radiation oncologist was Dr. Nancy Lee with Sloan Kettering.  The cancer was not elminiated after my first treatment, using standard radiation (and Cisplatin) in 2016.  

    I am 5 weeks from treatment end; the first 2 weeks after I had no side effects, just fatigue.  The past 3 weeks have been difficult (the usual side effects, mouth pain, unable to eat, I hae a PEG tube which has been essential, confoundingly thick and incessant ly choking saliva, clogged tear ducts, numb feet, hearing loss (the lat two are Cisplatin)...  I may actually feel human today, not sure.  My neck is physically sore to the touch, and is tight and sore on the inside.  

    I believe Dr. Lee was able to treat my cancer this time more agressively because of the ability to control collateral damage.  There is plenty of collateral damage, but hopefully the proton therapy was agressive enough to minimize the risk of another recurence.

    Hope this is helpful.

    Lynn

  • dalaitom
    dalaitom Member Posts: 27 Member
    #3
    LynnBin said:

    Proton Beam Radiation Therapy - reply

    Tom:  I finished proton radiation (w/ Cisplatin) treatment March 2, 2018.  I live in Ct; had to relocate to N.J. for treatment at ProCure Proton Therapy in Somerset N.J. - my radiation oncologist was Dr. Nancy Lee with Sloan Kettering.  The cancer was not elminiated after my first treatment, using standard radiation (and Cisplatin) in 2016.  

    I am 5 weeks from treatment end; the first 2 weeks after I had no side effects, just fatigue.  The past 3 weeks have been difficult (the usual side effects, mouth pain, unable to eat, I hae a PEG tube which has been essential, confoundingly thick and incessant ly choking saliva, clogged tear ducts, numb feet, hearing loss (the lat two are Cisplatin)...  I may actually feel human today, not sure.  My neck is physically sore to the touch, and is tight and sore on the inside.  

    I believe Dr. Lee was able to treat my cancer this time more agressively because of the ability to control collateral damage.  There is plenty of collateral damage, but hopefully the proton therapy was agressive enough to minimize the risk of another recurence.

    Hope this is helpful.

    Lynn

    Lynn,

    Lynn,

    My consult with the proton oncologist is tomorrow and I already had a consult with the radiation onclogist. I want to make an informed decision either way.

    What was your treatment for (tonsils, BOT, nodes)? How many areas did they treat? How many treatments did you get?

    Thanks for your response.

  • dalaitom
    dalaitom Member Posts: 27 Member
    #4
    consult

    I had my consult with the proton onclogist today. I have decided to go with the protons over IMRT. Only stumbling block at this point will be insurance. They said it's typical for insurance to deny the treatment initially but they will appeal it on my behalf and they indicated they've had good success in winning final authorization. Of course, they indicated it could take 2-3 weeks to get approval. The doctor said based on my lack of advanced symptoms that 2-3 weeks shouldn't present any additional problems. I spoke with my onclogist afterwards and she agreed with this assessment.

    Biggest take away from my consult besides the normal selling point on protons of "less damage to surrounding tissue" was that the doctor did not recommend getting a PEG tube. He said so few of his patients have needed one, and that given my current age/physical condition he saw no reason for me to get one.

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

    consult

    I had my consult with the proton onclogist today. I have decided to go with the protons over IMRT. Only stumbling block at this point will be insurance. They said it's typical for insurance to deny the treatment initially but they will appeal it on my behalf and they indicated they've had good success in winning final authorization. Of course, they indicated it could take 2-3 weeks to get approval. The doctor said based on my lack of advanced symptoms that 2-3 weeks shouldn't present any additional problems. I spoke with my onclogist afterwards and she agreed with this assessment.

    Biggest take away from my consult besides the normal selling point on protons of "less damage to surrounding tissue" was that the doctor did not recommend getting a PEG tube. He said so few of his patients have needed one, and that given my current age/physical condition he saw no reason for me to get one.

    Proton Treatment

    Hi Dalaitom,

    I'm currently 13 months out from Proton treatments at Scripps in San Diego. I did not need a PEG tube although eating was difficult, I only lost 30 lbs. I'm NED after my last CT scan and am able to eat most foods. Saliva has been slow to come back but I've learned to cope with it, it's been much better though the past two months and I'm eating foods now I couldn't even stand to try and eat 6 months ago.

    Good luck to you and I absoutely believe you made the right choice in Proton!!!


    Don

  • Tilly26
    Tilly26 Member Posts: 30
    #6
    Proton here too

    My husband had stage iv, hpv + tongue cancer that traveled to his lymph node. He did proton because of the specific location and less side effects. He mask was hard at first to put on, but got better. He had 5 days a week for 6 weeks. He did lose hair in the back of head where the beam exited. He had severe burns on his neck, lost almost 50 pounds, got thrush, and was very weak. This progressively got worse after 2 weeks in. He also had robotic surgery for removal of a small part on back of tongue (which he didn’t even notice) and had the large node removed through neck dissection. It was awful. BUT. But, here we are, one year after his last treatment and he is dang near perfect! Always needs water while eating, but eats almost everything. Neck healed up well and he is starting to finally gain weight back. Doctors scope his throat every 3 months and are happy with what they see. He did not do chemo. it wasn’t really needed in the drs opinion bc of the one node it had traveled to. But due to size of the node, radiation was told was needed. And after explaining how proton distributed versus traditional, it was our first choice. I pray every night that the cancer will never return and I take every good follow up appointment as they come. Prayers for you on the road ahead. You will make it through and you will enjoy every little thing so much more. take care!

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