2 weeks post treatment. When will the pain stop! 35 rads 2 cisplatin chemo. HPV+

dkcoffey
dkcoffey Member Posts: 5
in Head and Neck Cancer #1
Hi I have cancer in my throat but because they couldn't locate exactly where it came from I had radiation from about where the tip of my nose is to just below my neck above my chest. I had radiation 5 days a week for 7 weeks. I also had 2 rounds for Cisplatin Chemo. I was supposed to have 3 but got too sick after the 2nd round. Anyways now that I've finished all the treatment and I'm 2 weeks out, when will I feel better!? I feel ok for the first few hours of the day but after around noonish or so I start to feel worse and worse as the day goes on and I get very tired but can't sleep. My throat, jaws, mouth, and head hurts so bad. I take Oxycodone but I'm scared taking so much pain medicine is going to hurt me. I take about 20 mg every 4 hours because I feel so terrible! I wish I could eat but at this point I don't care about the eating I just want the pain to stop! Is there anyone thats been through this too that can help? My head and jaws hurt sooo bad! Anyway I have metastatic squamous cell carcinoma in my throat. HPV+

Comments

  • blackswampboy
    blackswampboy Member Posts: 341
    #2
    four weeks out
    I'm four weeks out from radiation for HPV-16+ SCC (left tonsil). for me, the first two weeks out were pretty miserable as well.
    finally starting to feel better just in the past two days (one month out): mucous is down, sleeping more, energy up a little. but mouth is still dry and burning, no improvement there yet. some other side-effects are still with me too. but that's just me--doesn't mean you won't feel better sooner, and we hope you do!
    my onc says the radiation is still cooking... not easy, but at least it means the cancer mass is still shrinking.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I know you're probably tired of hearing that
    everybody is different. I'm about 6 weeks out of rads, but still have 2 chemo's left to do...my worst time during all of this was this last month after chemo #4. Even the rads didn't get to me as bad as this last chemo....Having said that, I've heard on here many times that you keep on cooking for 2 weeks after radiation....and that those two weeks are the worst for many. If that's the case, you should start feeling better soon. I hope so.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Usually....4 - 6 weeks
    Though not much is "usual" for this ordeal..., but on the average it seems that 4 - 6 weeks is the ending of the worse period.

    To actually start feeling good, well that takes awhile, usually measured in weeks and months..definitely not days and weeks.

    But little be little, the good days start out numbering the bad days.

    I wouldn't get wrapped around not taking the meds...if you need them take them.

    Anything that could result from taking them can be dealt with later...the main objective now is to get through Tx and recovery.

    Best,
    John
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    2 weeks post
    dkcoffey,

    I would hope you will start to feel better soon. At one week out I had neck burn which was terribly painful. Since you got radiation over such a sizable area it only makes since that you might take longer to cool down. Be careful with the pain meds but be even more careful about not taking them. You did not mention what the pain was in the mouth or throat, do you have sores or does it just hurt? I sipped magic mouth wash to kill the mouth and throat pain.

    You are at the right time for a turning point; I hope it happens soon for you.

    Best,

    Matt
  • dkcoffey
    dkcoffey Member Posts: 5
    #6
    CivilMatt said:

    2 weeks post
    dkcoffey,

    I would hope you will start to feel better soon. At one week out I had neck burn which was terribly painful. Since you got radiation over such a sizable area it only makes since that you might take longer to cool down. Be careful with the pain meds but be even more careful about not taking them. You did not mention what the pain was in the mouth or throat, do you have sores or does it just hurt? I sipped magic mouth wash to kill the mouth and throat pain.

    You are at the right time for a turning point; I hope it happens soon for you.

    Best,

    Matt

    Tired and hurting
    It's a real dull achy pain thats all over in my jaw and I don't know if it's from that maybe that's making my head hurt so bad. I don't feel any sores but maybe raw spots because when I try to put certain things in my mouth it burns and stings very badly. It kind of worries me because I haven't really seen many on here complain much about the pain like I have. I mostly just see people complaining and worrying about eating or having sores in their mouths. I can tolerate the coughing up mucus etc, but the aching pain and feeling so tired is horrid! I also forgot to mention my ears really hurt too. I feel like Mike Tyson beat the crap out of my entire head and face! Something else that's weird is ever since my 2nd round of Chemo I'm fine all day with this until about 3pm or so and my temp gets up between 99.0-99.9 every day in the evening. It's normal during the day, it's only in the evening. Thanks for everyones support and advice!
  • Sam999
    Sam999 Member Posts: 319 Member
    #7
    dkcoffey said:

    Tired and hurting
    It's a real dull achy pain thats all over in my jaw and I don't know if it's from that maybe that's making my head hurt so bad. I don't feel any sores but maybe raw spots because when I try to put certain things in my mouth it burns and stings very badly. It kind of worries me because I haven't really seen many on here complain much about the pain like I have. I mostly just see people complaining and worrying about eating or having sores in their mouths. I can tolerate the coughing up mucus etc, but the aching pain and feeling so tired is horrid! I also forgot to mention my ears really hurt too. I feel like Mike Tyson beat the crap out of my entire head and face! Something else that's weird is ever since my 2nd round of Chemo I'm fine all day with this until about 3pm or so and my temp gets up between 99.0-99.9 every day in the evening. It's normal during the day, it's only in the evening. Thanks for everyones support and advice!

    It seems we are still
    It seems we are still cooking upto 6 weeks out of rads. I am out 5 weeks and tounge burns for most foods. But what does not seem right is you having so much pain. There should always be some mediciine for pain. I was at 150 mcg fenatyl patch when my rads were done. I have heard people having even higher doses than that. You should aks your doc for more pain medication. Once pain is in control, you can eat more, rest more and recover quickly.

    My ears where hurting a lot so my doc gave me some ear drops that is helping. I put them once or twice a day.
  • hwt
    hwt Member Posts: 2,328 Member
    #8
    Sam999 said:

    It seems we are still
    It seems we are still cooking upto 6 weeks out of rads. I am out 5 weeks and tounge burns for most foods. But what does not seem right is you having so much pain. There should always be some mediciine for pain. I was at 150 mcg fenatyl patch when my rads were done. I have heard people having even higher doses than that. You should aks your doc for more pain medication. Once pain is in control, you can eat more, rest more and recover quickly.

    My ears where hurting a lot so my doc gave me some ear drops that is helping. I put them once or twice a day.

    After effects
    My doc said it would be 2-8 weeks. I saw improvements but really turned the corner week 5 and had all my energy back week 6. Never experienced the head pain nor have I heard anyone else report that. I too had a fentynal patch 25mcg then went to 50mcg but it was too strong for me. Head pain concerning.
  • Ingrid K
    Ingrid K Member Posts: 813
    #9
    take the pain meds.
    DK
    the 20 mg doesn't seem like that much. I was taking WAY more..... My doc had told me the best thing I could do for recovery was to stay ahead of the pain by taking the pain meds regularly, and stay hydrated. He said that cancer pain is unlike any other, and to not worry about become addicted to pain meds. If you are in pain, you cannot heal. You may need to ADD a different pain med to your schedule. I took Hydrocodone for 18 months. Don't know if you have a feeding tube, but you can get Hydro in liquid form if needed.
  • katenorwood
    katenorwood Member Posts: 1,912
    #10
    Ingrid K said:

    take the pain meds.
    DK
    the 20 mg doesn't seem like that much. I was taking WAY more..... My doc had told me the best thing I could do for recovery was to stay ahead of the pain by taking the pain meds regularly, and stay hydrated. He said that cancer pain is unlike any other, and to not worry about become addicted to pain meds. If you are in pain, you cannot heal. You may need to ADD a different pain med to your schedule. I took Hydrocodone for 18 months. Don't know if you have a feeding tube, but you can get Hydro in liquid form if needed.

    Yes take the pain meds !
    DK,
    Hello ! I'm sorry you're having pain like this, but I agree with staying ahead of the pain. 7 months out I'm still having days where I want to scream enough ! My dx was different, and I have alot of nerve damage. Also the liquid seemed to work better for me in the beginning. Good luck, and just take each day as it comes, and before you know it things will turn around for you ! Warmest regards, Katie
  • Billie67
    Billie67 Member Posts: 898
    #11
    katenorwood said:

    Yes take the pain meds !
    DK,
    Hello ! I'm sorry you're having pain like this, but I agree with staying ahead of the pain. 7 months out I'm still having days where I want to scream enough ! My dx was different, and I have alot of nerve damage. Also the liquid seemed to work better for me in the beginning. Good luck, and just take each day as it comes, and before you know it things will turn around for you ! Warmest regards, Katie

    I'm sorry
    I'm sorry you are still in that rough spot. I'm 6 weeks this Friday and while I'm able to eat a bit and for the most part if I can taste it slightly I too still have some pain and I am very tired. I also feel pretty weak but I'm getting a bit better each week. The head pain you talk about, is it a headache or painful as in to touch it? I'm just curious if it is a narcotic headache? I had to switch to a different pain med for that very reason. It was giving me terrible headaches. Food for thought......
    I hope you start feeling better very soon.
    Take care,
    Billie
  • yensid683
    yensid683 Member Posts: 349
    #12
    It will - but it takes time
    I am in a similar spot, and can relate. The last two weeks of rads were the worst part of my treatment, but the follow two weeks of 'continued cooking' were equally challenging. You feel that because the treatments are complete that you should be getting better and it is frustrating as can be that you're not.

    I'm in my third week and things have started to change for the better. Pain is always a challenge and as so many of our fellow warriors have said, TAKE THE MEDS! PAIN IMPEDES YOUR HEALING PROGRESS.

    I found that each day brought new improvements, small ones to be sure, but improvements. I saw the mucus start to thin, I found that the burns healed and started peeling, and that I started tasting things again. Salt came back first and I first noticed it in the salt water/baking soda rinse. Saliva is still a challenge as is stamina, but you will find that things get a little better each day. In another week it will be something you can actually track.

    Hang in there, it may hurt now, but it will be better.

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