"First bite syndrome" - oh it hurts!

JeffinTX
JeffinTX Member Posts: 4 Member
edited December 2022 in Head and Neck Cancer #1

Hey All, I had head/neck cancer diagnosis in June 2018, finished treatment in Sept 2018 (2 rounds of chemo + 42 days IMRT radiation). The treatment was pretty rough but now I'm 7 months post-treatment and each day is a little different, mostly in the positive direction.

 

Before treatment, occasionally I'd experience "first bite syndrome" - after not eating for a few hours, if you eat something you'd get a pretty intense pain in the salivary gland area around the pivot point of the jaw. Lately that first bite syndrome is much much worse, like super painful. It was on my left side, then subsided some, now its on my right. 

 

I wonder if anyone else feels this too after head/neck radiation, and if you've found anything that works to reduce the amount of pain associated with it. Its pretty extreme and just about brings me to my knees. I've asked the docs I see, they don't have much input on the subject :(

 

Thanks for any thoughts,

Jeff in Texas

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #2
    I Have

    Never experience what you are going through nor do I remember it being discussed. But then again my memory is not that great. At least as you say you are headed in the right direction and feeling better except for this. There are some weird things that go on with cancer treatment and recovery and this may be one of them and hopefully, it will lessen and fade away. Maybe someone else will see your post that had this-Take Care-God Bless

  • bugsyboy
    bugsyboy Member Posts: 39
    #3
    First Bite Syndrome

    Although I've never experienced what you're talking about, my first bite syndrome is with certain foods.  My last treatment was October 2014 and since then, and even now, certain foods first bite tastes great, second bite is cardboard.  This is true with a lot of fruit (cantaloupe, watermelon, pineapple, apples, oranges and others) and ice cream.  I guess this is what they call my "new normal" now.

    Your being able to eat orally after treatment is great.  I'm guessing as with everything else, as you continue your recovery, this too shall pass.

    Best of luck.

    Bugsy

  • dalaitom
    dalaitom Member Posts: 27 Member
    #4
    My first bite syndrome

    I am 9 months out of treatment and I can taste everything fairly normally except sweets. When I take a bite of something sweet, for about one second I taste the sweetness, and then it turns into what I would describe as a bad tasting artificial sweetner.

    Although this is totally different than what you describe, I would suppose this falls under the old saying about chemo/rads that "it can effect everyone differently." Hang in there. This could be like many other post-treatment symptoms and fade away with time.

     

  • JeffinTX
    JeffinTX Member Posts: 4 Member
    edited April 2019 #5
    Thanks everyone for the

    Thanks everyone for the insight. This really feels neurological in nature. The fact that I had the issue before treatment (albeit not as bad) tells me that maybe I'm just unlucky in my physiology. Also it started on the left side, resolved there and moved to the right side. Its just SO painful when it happens. Interestingly I don't have the taste issues so much other than my favorite cheese (Feta) now tastes and feels like powder in my mouth. That's a drag. Most of my taste is "normal" now but not having as much saliva is a real drag. 

    Thanks again folks...

  • yensid683
    yensid683 Member Posts: 349
    #6
    Me too

    I've recently started to have something like this as well.  I was DX in March of 2012, one round of induction chemo, 33 rads concurrent with weekly erbitux and started having something like this about a month ago.  My first bite of anything, especially if had been some time since I ate something, would give me a momentary, very sharp pain in the area of the sub mandibular saliva gland.  I have an appointment with my ENT next week to see.

    Rads were concentrated on the left side, and that gland has been 'dormant' for lack of a better word, but recently I've developed a painful lump in the area similar to a swollen lymph node.  I had two selective neck dissections to the left side so I'm fairly confident that it's not a node, they were all removed in those surgeries. 

    I did some searching and based on the very odd symptoms I'm having it could well be a saliva stone blocking the duct, though I'm only guessing.  I'd at least touch base with your medical team.

  • Greddy100
    Greddy100 Member Posts: 13 Member
    edited March 2021 #7
    First Bite me too

    HPV16 T1 tonsillectomy surgery only no Rads or chemo.  3 to 5 months post op had first bite Syn. Introduce anything to my mouth a drop of water and it was like having a shot of vinegar. I was fearful that I was having advancement of cancer but it has improved. 

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    #8

    I’m very early in my treatment but am experiencing this pain 10 days after neck dissection. I mentioned it at my follow up appointment today and was told it was first bite syndrome. At least it goes away after a few bites. Hopefully it subsides with time.

  • JeffinTX
    JeffinTX Member Posts: 4 Member
    #9
    https://csn.cancer.org/discussion/comment/1702526#Comment_1702526

    Hope you can find a solution. I'm about 4 years from onset of symptoms, they have gotten a touch easier to deal with, I start every eating session with very tiny, rice-sized bites to "condition" my jaw. With a few bites it seems to spread it out a bit and lessen the deep pain. Once I've "broken in" the jaw then I can eat normally. I've found that corn chips work well for this, or crackers, or cucumbers of all things. Cucumbers seem to be a much-less severe thing than just every other food in this respect for some reason which I don't understand.

    Best of luck - I hope it goes away. I'm starting a high-dose steroid trial soon to try to fix another issue, and hoping the steroids may have some effect on the jaw pain.

    Take good care...

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #10

    I have never experienced this myself but I did a little checking and if you do an internet search using the phrase--

    "first bite syndrome"

    and

    "first bite syndrome treatment"


    You will get more results "than you can shake a stick at" ( Old Saying )

    Way too much to post here and it will keep you reading for a while.

    Take Care God Bless-Russ

  • JeffinTX
    JeffinTX Member Posts: 4 Member
    #11

    Yep, there's

    https://csn.cancer.org/discussion/comment/1702532#Comment_1702532

    Yep, there's a few proposed treatments, which I've tried, with unfortunately no success. The botox injections were so painful I almost passed out. I'm just hoping that with the passage of time they'll resolve or I'll get more used to it. Odd thing is that I never had any surgery - just radiation to the area, which apparently was enough.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #12

    Well Jeff I hope it starts letting up on you soon.

    At least it seems you have adapted a few pre-eating ideas that make it more bearable.

    Take Care God Bless-Russ

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