For those about to radiate...

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Hi All,

Short history...

February 2016 - Diagnosed tongue cancer, HPV-, under left side
April 2016 - Surgery, tongue, left modified neck dissection (one node affected, 2 levels of nodes removed)
May 2016 - 33 rounds IMRT, tongue and neck
August 2016 - Discovered lump on right neck (found on early PET scans, dismissed as physiologic)
October 2016 - Surgery, right radical dissection, all nodes and jugular vein removed
November 2016 - 35 rounds Proton Radiation on right neck, 6 rounds chemo

I was treated at Memorial Sloan Kettering in NYC. Fortunate to have access to a major cancer center. Currently cancer free, and I 'm grateful. However...

You can probably guess what 68 rounds of radiation has done to me.

Nine months post secondary treatment, my right jaw muscles began to spasm and contract. The skin is completely fibrotic and tightens with the spasms. These spasms completely close my jaw, are excruciating, and has had a severe affect on my ability to speak, eat and perform oral hygiene.

Drugs don't work. The only relief is Botox, which is uncovered by insurance, and creates other issues with long-term use. I'm starting to look like Michael Jackson.

The spasms are now in my left side cheek, as well.

My skin has tightened so much, I feel like I'm wearing a cement collar and it's left no room in my neck to the point it's symmetrically off-balance with the left side. It's also nearly 100% numb to the touch.

Turn my head? That's a laugh. They said keep turning your head to stave off the affects. Right. Human tissue is no match for 68 rounds of radiation.

Thank God I took great care of my teeth because I still have them. However, I can only open my mouth the width of one finger, so X-rays are impossible and I don't anticipate this good luck to last much longer. Fortunately, my dentist is also my Botox guy, since he's trained to administer it for TMJ disorders like mine.

My second radiologist told me "I'm gonna throw the atomic bomb at you". And she did. The proton rads made the big difference between slight discomfort and downright debilitating.

I found that comment a bit comical since she's of Asian descent. She may know a thing or two about atomic bombs.

And herein lies the problem. No one warned me about the side effects of all this radiation. The only warning I received was I would lose my beard. Nothing else. Did I need to have so much? Why and why not? I know my cancer was aggressive and the goal is to eridicate it. But at what cost?

My social life has become nil. I no longer have the luxury of grabbing a bite to eat, speak comfortably, or avoid feeling self-conscious over how all this looks. And the fatigue? It took over a year to get my pre-cancer levels back. And I'm still off a bit.

If you're about to have radiation, understand that your life WILL change. And if you're lucky enough to have double treatments, your life will EXPONENTIALLY change. Ask the dosage amount, what it means and what the long-term affects will be. Quality of life after cancer is important! Otherwise, what's the point?

If I survive, there is no doubt my jaw will need to be replaced at some point. I'm happy to be alive. But sometimes I truly think if this was all worth it.

Comments

  • whoisjohngalt
    whoisjohngalt Member Posts: 30
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    I can only imagine

    how difficult life is for you. I had hpv cancer and radiation (ONCE!). I had an easier time than others but can only imagine what your life has become. Please try and keep the faith, you seem to be a strong man. I hope you can find some peace and comfort going forward.

  • wbcgaruss
    wbcgaruss Member Posts: 2,323 Member
    edited May 2019 #3
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    Thanks for sharing

    Your story. I think that is the most rads I have ever heard of anyone getting. It's no wonder you have some problems. Hang tough you are going to find ways to work with your situation-God Bless

  • tommyodavey
    tommyodavey Member Posts: 727 Member
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    How Awful

    Your post is a wake up call for those heading for the mask.  It is always better to be informed even if the news is not good.  There may or may not have been other options.  If you have been forwarned then at least you could have done some research.  I too have never heard of so many treatments to the head.  No wonder you have a laundry list of problems.  

    When you first came here I remember thinking how bad of road you were walking.  Now it appears to be a lot worse than it seemed back then.  But overall you've kept a good attitude with your treatment.  I'm so sorry to hear the quality of life you face now.  It makes my small amount of rads side effects nothing compared to yours.

    Thanks for posting.  Maybe it will help some new member do more questioning before receiving the rads.

     

  • swopoe
    swopoe Member Posts: 492
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    I am glad to hear from you

    I am glad to hear from you Steven, but I am sorry you are having such difficulties. You are right, doctors need to be upfront about the side effects and lifelong effects of treatment. Keep hanging in there- you are one of the strongest guys I “know.”

  • ProustLover
    ProustLover Member Posts: 121 Member
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    Sharing your experience

    Steve - for you to recount your experience here is a huge help to others.  I'm guessing that most folks find this site around the time of diagnosis, before treatment  gets underway.  I'm guessing (again) that in the early days most patients take doctors' words at face value.  In retrospect, it seems that what they say is true but never enough, especially when it comes to radiation.  My husband's radiation doctor took about two minutes to read a list of "potential" side-effects, making it sound like they were  only "potential" and very short-term.  We can't claim he didn't tell us, but he sure minimized what turned out to be multiple long-term effects.  Ultimately it wouldn't  change most treatment plans, but people deserve to know more going into this.  If it's any comfort, you're doing a good thing by sharing your story.  

  • wbcgaruss
    wbcgaruss Member Posts: 2,323 Member
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    I just have to Add

    In agreement with the others, you are certainly a strong guy, strong-willed and an inspiration to us all-God Bless-take Care

  • SuzJ
    SuzJ Member Posts: 427 Member
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    Very glad to hear from you

    I wondered how you were doing

     

    I remember some of the men saying something about not having to shave,...

     

    It's ok, post a pic! we'll see more of your cute face :)

     

    I remember being upset because I lost all my hair below my ears, I lived with long straggly hair, that covered the bald area.. so vain .. (me not you!)

  • Logan51
    Logan51 Member Posts: 465 Member
    edited May 2019 #9
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    Steven

    Like the others, I'm sad to hear your Rad. story and wish the best for you.

    The thing is about the warning: such has been done on this forum by others, especially Hondo/Tim. He was first treated at a lesser C-center that did not eliminate his NPC. Round Two of the Rads did to his mouth some of what you describe- said he could only open his mouth for a 1/2" gap between his teeth. Years ago there were stories about people being told they could only have partial/limited Rads highly targeted due to prior Rads. 8-10 years ago this was commonly known on the forum about what you are describing about a 2nd Round even years later, let alone so dang soon. Even heard of people being told they shouldn't have anymore Rads, and the Dr.s were going a Chemo route.

    What gets to me is the Rad Drs. are supposed to know. Even my Rad. Dr. in Davenport, Iowa, told me the wait between Rad. sessions needs to be at least 3 years to let the body/tissue/etc. recover some from the 1st Round with H&N. The Dr.s/imaging Dr.s screwed-up in not finding your neck C before the 1st Round. Does not make sense that it would not have been there with how soon they did find, and you already had Rads...But no concurrent Chemo with your 1st Round? That I find difficult to understand. AND, even with that, it seems like a major overkill on the Rads so soon after the 1st Round that the Asian Dr. had to know what kind of damage would result. I am now over 10 years out and on meds for neck spasms (got zapped in 20 places- unknown Primary), and I'm wary of what another round of Rads would do to my mouth and neck, though I don't know the particulars in difference between Proton and the old-fashioned I got. 

    Hope the Dr.s/medical team are helping you and will continue to in what is now a newer new normal to the negative. Keep us updated on how things are going for you.