Radiation de-escalation study

Comments

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    Johnsonbl

    read that article, wish I knew as much as I know now back 3 yrs ago.  I would have quit rads after 4 weeks ( my gut said it was enough) & would probably still have Saliva, & not all the medical conditions I’ve developed because of saliva loss.  Stage 1 HPV 16+, no lymph, no surgery.. Blasted to hell & back.  I agree with article, don’t think one treatment is for everyone.  Each person is different!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited August 2019 #3
    pardon me johnsonbl

    Drivingdaisy,

    Don’t be too hard on yourself.  There are (were) H&N members amongst us, who (may) have

     wish they had thrown more cancer treatments at their HPV+   squamous cell carcinoma. 

     

    “Hey you, the ugly dog cancer who has been hounding me, you  want so more chemo? Well take some carboplatin, or eat this cisplatin you piece of trash and don’t forget your radiation treatments here have some EBRT with a side of IMRT to finish you off”

     

    It is true. You might have been fine with much less, but we just do not know.  Well, we might be able to get a partial answer from our own H&N forum member DonFoo.  As many of us remember Don inserted himself into the decision process for his treatment plan. I think they even made him or he made himself an official team member. He learned a lot and shared everything he learned with the H&N forum and in a blog he maintained throughout his treatments.  I have heard that he even donned some scrubs to look the part during his visits with his team (the part about the scrubs is Matt humor, beware of it).

    It really is true about Don, but I do not know how much Don actually did influence his oncologist in his treatment options. Maybe, he will pay us a visit. News at 10.

    Drivingdaisy I feel bad for your those side-effects you have and I have and most of us have that drive us crazy, but  we like you just the way you are with your lack of saliva and medical conditions, brought on by the saliva condition.

    Matt

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    Actually, in October 2016 for

    Actually, in October 2016 for treatment of Stage III +HPV my rad onc at Kaiser-Lonetree in Colorado did reduce my treatment.  We kept the same number of doses (35), but reduced the rad.  It was also retargeted since the center had shifted.  It was emphatically to reduce damage.  My onc was in his first three months following fellowship at MD Anderson for H&N.  It was his call, he said MDA probably wouldn't have, but he felt it was the correct treatment. 

    I do sip most days, and buy xylimelts by the ton, but saliva is okay, sometimes even good, most of the time.  What is more of a problem is the muscle tissue under the skin tissue burn area.  I can stretch it loose, but it always tightens up again.  The one muscle right below my ear and at the end of my jaw might as well be steel.