Concerns

cid817
cid817 Member Posts: 58
in Head and Neck Cancer #1

I'm the wife of Tom who was diagnosed the end of August with stage IVa SCC of the epiglotis & 2 nodes.  Finished 8 cisplatin chemos last week & has 2 more rads to go for a total of 38.  The last 6 rads are to be directed at the tumor.  I've been reading a lot of the posts here and have an idea what to expect, but a big concern is that the rad machine keeps breaking down and they have to make him wait until they get it fixed.  This has happened many times, just about every Monday and other times during the week also.  The doc said he can assure us that he is getting the correct amount of rad.  He now has a burnt taste and a higher level of pain that is not being relieved with the pain meds any more.  He said that todays treatment was rough and he is much more uncomfortable tonight than any other time. Am I being too paranoid that the machine is not correctly calibrated?  Are his symptoms "normal" for this stage of treatment?

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    rads

    cid827,

    Everyone’s rad machine should be calibrated for line-up and intensity accuracy.  This is outside of the daily checks which occur for each treatment.

    I do not know what constitutes a “break down”, but those overseeing and regulating its use should be aware and current with any problems.  If it was serious any competent manager would take said machine off line.

    That being said, I have no idea of the severity of your problems (with rad machine), but think it is being operated within reason.

    As for your husband’s condition, it sounds normal.   During weeks 6, 7 & 8 I had neck burn which was by far the worst pain of my treatments, but with application of Silver Sulfadiazine Cream the pain went away.

    You are almost there, then it will start to get better.

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    cid817

    I have read where others have experienced machine breakdowns but it never personally happened to me. I can tell you that my pain was harder to control at the end of my tx. I was given a fentynl (?) patch and they increased it to the point where the patch was worse than the pain. If it is any consulation, as soon as tx. stopped, I started feeling better even though others have said the weeks following were a tough time for them. Those 6 tx will pass quickly then the healing can begin.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    My IMRT broke down once....

    They called me on a Monday and told me not to come in, but it would be fixed by the next day....the next day they called....and then they called on Wendsday, too.....I was nervous because it meant I'd gone 5 days without radiation....a whole damned week was what my head was telling me.  What it did was save my neck....literally....I needed that break to heal up a little.

    Nothing adverse happened because it it tho.  I would suspect that the calibrations for your hubby are fine....that ANYTHING untoward happening with a rad machine is reason to call off treatment.....Most of these rad docs are mathematicians at heart.....things have to be just so, or it's not good enough....they're looking for absolutes....with no chance of things being off.

    p

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #5
    Broken down

    Mine broke down twice...DURING my treatment.  Scared me more than anything.  Loud beeping, lights flashing...I was a little freaked out being strapped down by my head and all! They immediately came over the intercom and assured me it was ok and that it would recalibrate before coming back "online" and my treatment picked right back up where it had stopped.  It's pretty terrifying for a second when it happens, but they didn't seem alarmed by it at all.  It sounded pretty common, and I was at a facility with some top notch (new) equipment.  I think it tends to happen more than we realize. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    I should have added a PS....

    by the time a person is at the end of 38 rads, I'd say your husband's comfort level is par for the course....he's almost to the end of the whole thing.  The two weeks following rads can be the worst of the whole ordeal, so I expect he'll be even more uncomfortable by next week at this time.  Just make sure he stays up on his hydration, and gets his calories everyday.....Encourage that he take something by mouth everyday....water, protein drink, peaches, L-glutamine mixed with water if he has sores in his mouth.....something to keep that swallower going.

    p

  • cid817
    cid817 Member Posts: 58
    #7
    Thanks

    So it sounds like machine break downs are rather normal.  TracyLynn72 - that sounds very scary!  How awful for you!  Glad it turned out ok though.  Tomorrow will be his last rad and he can ring the bell as he leaves the office!  Cool  His pain is increasing, they gave him pain meds, and morphine only if he needs it.  Hate to think of him possibly being in even more pain over the next couple of weeks.  He's been drinking water and actually ate soup for lunch and fish and veggies for dinner, but was in more pain after dinner.  So he is keeping his swallower going as much as he can.  Has been using the peg more and more for hydrating and nourishment...some days more than others and I expect it to be more over the next few weeks.  As so many people here have said, everyone is so different with their side effects and handling of treatments.  We will hope and pray for the best.

    Thanks for all your answers and putting my mind at ease.  You all are great!

    Cindy

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