Recovery Time? What was your experience?

Bunnymom
Bunnymom Member Posts: 212 Member
edited February 2015 in Head and Neck Cancer #1

I'm curious to know how long it took for others on the forum to recover from treatment. For me, it's almost 6 months. I'm still experiencing pain in my mouth, fatigue, lack of saliva, etc.

I'm a little discouraged because I was expecting a faster recovery. I know everyone is different but I'd like to hear about your experience. I think this would help me feel better if I can understand how long it took other people to recover, to know that I'm not the only one who hasn't recovered as fast as I'd hoped and what I'm going through is to be expected.

sorry for the long-winded question. 

 

Thank you!

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    bunny, i think you are on

    bunny, i think you are on track.  i had a laryngectomy 2/28/12 and it took me 1.5 yrs to come back fully from that due to complications.  i'm sure others will chime in who had the same tx as you but i don't think you are behind them.  good luck and try to be patient.  don't let it get you down.

    God bless you,

    dj

  • thennies61
    thennies61 Member Posts: 285
    #3
    Think everyone gets in hurry

    Think everyone gets in hurry after treatment.I was lucky enough to go back to work 3months after.I don't have dry mouth but my throat is dryer.I actually feel I have to much slivia as when I talk my mouth will fill up and will slur my speach which is hard enough now.But as my doctor tells me ever 6 weeks don't get in hurry we have been though alot and takes time.

  • hlrowe
    hlrowe Member Posts: 80
    #4
    2.75 years out and still improving

    It's different for everyone. For me it was not a linear time frame. That is, my saliva or taste did not improve X percentage the same each month. They would get better a few months in a row, then stay the same. Then improve, etc.... It can get frustrating.

    6 months from now you will probably see an order of magnitude improvement!

     

  • hwt
    hwt Member Posts: 2,328 Member
    #5
    hlrowe said:

    2.75 years out and still improving

    It's different for everyone. For me it was not a linear time frame. That is, my saliva or taste did not improve X percentage the same each month. They would get better a few months in a row, then stay the same. Then improve, etc.... It can get frustrating.

    6 months from now you will probably see an order of magnitude improvement!

     

    Long process

    I had my energy back at 6 weeks but used MMW for well over a year to eat. 

  • Sailor123
    Sailor123 Member Posts: 97
    #6
    Hi Bunnymom:
    Hang in there.

    Hi Bunnymom:

    Hang in there.  It takes a while.

     At six months I was still feeling much like you are.  I am now 10 months post treatment and for the last two months I have felt really good.  I'm still not back to my original energy level, but its coming.  Every week I notice a big difference.  I am back to work and feeling happy and healthy for the most part.  I still have limited saliva production though it keeps getting better and I can't taste ANYTHING.  That is a bummer but I can live with it and everything else is pretty great.

    You will get there.  Hang in there and get good nutrition and plenty of water.  Spring is on its way.

    Shirley

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    I'm 2 1/2 years out now...

    Still have a pretty dry mouth, and my tastebuds are still lacking....nothing like they were after treatment where nothing had a taste....but still, taste has been dulled.  I ate an italian dish today at lunch, and it burned....but I've eating Mexican food, medium salsa, and that was fine....different spices seem to be the culprit...guess Mexican spices aren't as hot on my individual mouth, huh? :)  Fatigue....that was a slow one to improve.....I mean, I went back to work 6 weeks after treatment and was able to do that as long as I managed to get 10 hours of sleep....but by weekends I needed a 12 hour sleep to start coming back.  By a year out, I was still needing 9 or 10 hours a night.  In the last 8 or 10 months I'm back to 7 hours being plenty. 

    Patience is the key....it is a long process.

    p

  • wmc
    wmc Member Posts: 1,804
    #8
    It all depends...........

    For what you went through, you're doing good. Mine was only surgery and took my larynx and 86 lumph glands, but no chemo or radiation. It takes so much longer with radaition and chemo. I just had to learn to swallow and talk again. Yes I went back to work in 10 weeks, but I an still getting adjusted to it. My neck will never be like it was. The left side is numb and I have feeling in the right side which I wish was numb as well. I have to shoot 3 ml of water down my stoma to keep in clean and cough so hard I see stars. That is every day. I'm in pain 24/7 and take pain pills for that to keep it under control. Then my emphysema got worse and i'm on dissability from now on. There has been a lot of changes that I can't explain. A year ago I was better now my cholesterol jumped from 175 to 210 and Triglycerides went from 73 to 238 and I have not changed anything in my diet, only more meds.  I am one of the lucky ones. I stayed on top of my problem and the doctors found it and removed the tumor. At that time I left work, no one thought they would ever see me again. Only five people belived in me. Myself, doctor that did the surgery, my wife, and two good friends from work. My son and brother, father-in-law, and nieces thought I was done. They were wrong...... I'm getting stronger every day and working on my lungs to get better. Might have to have 30% removed from each, but i'm still debating that, it is worse than having a heart surgery and can have more complacations. But the good news is..........I wake up every day and enjoy it to the fullest. I have gotten pasted, one day at a time. To me it's all about tomorrow. As soon as the weather permits I'm going to the Mountains where I love to be. Just have to take oxygen with me, but I can still go.

    So much of the recovery is up to you, and what the doctors had ot fix. You just get the attitude I can do anything I want and I will show them. I worked every day for two months to learn to whistle again. [they say laryngectomee can't whistle any more] But I can. I also figured out how to blow up a balloon and have stage 3 emphysema and no larynx. But I can.  You can see it if you go to my Expressions. 

    It is a slow process but YOU CAN TOO.

    Bill

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #9
    talked to the med Onc, he

    talked to the med Onc, he said mouth and tongue pain is a common complication of chemo / rad. At six months, he said I still need time to heal and its a slow process. He also said that even though sores from mucosis cannot be seen the soreness may not yet be healed. I didn't know this. He also said the tongue develops scar tissue from the treatment and that can cause pain.

    I'm not feeling that great, my mouth hurts a lot and I just generally feel pretty rotten. I hope things start to improve.

  • wmc
    wmc Member Posts: 1,804
    #10
    Bunnymom said:

    talked to the med Onc, he

    talked to the med Onc, he said mouth and tongue pain is a common complication of chemo / rad. At six months, he said I still need time to heal and its a slow process. He also said that even though sores from mucosis cannot be seen the soreness may not yet be healed. I didn't know this. He also said the tongue develops scar tissue from the treatment and that can cause pain.

    I'm not feeling that great, my mouth hurts a lot and I just generally feel pretty rotten. I hope things start to improve.

    So do we...........

    If he gave you something for the pain, please do use it. If not you should ask for something. Until then you can take 800mg of motron three times a day. That is what I took for years for my bone spurs  in my nech that were pinching nurves. Dr said he could give me a Rx but it was cheaper to just buy over the counter and take three at a time. I think four times was the MAX at 3200mg in a 24 hours that was safe and not hurt your kindeys. I did that for over five years.
    We'll keep you in our thoughts and prayers.

    Bill

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #11
    wmc said:

    So do we...........

    If he gave you something for the pain, please do use it. If not you should ask for something. Until then you can take 800mg of motron three times a day. That is what I took for years for my bone spurs  in my nech that were pinching nurves. Dr said he could give me a Rx but it was cheaper to just buy over the counter and take three at a time. I think four times was the MAX at 3200mg in a 24 hours that was safe and not hurt your kindeys. I did that for over five years.
    We'll keep you in our thoughts and prayers.

    Bill

    Bill,
    i was taking Advil but

    Bill,

    i was taking Advil but I could try Motrin. I was worried that daily use at that mg would affect your liver. 

  • wmc
    wmc Member Posts: 1,804
    #12
    Bunnymom said:

    Bill,
    i was taking Advil but

    Bill,

    i was taking Advil but I could try Motrin. I was worried that daily use at that mg would affect your liver. 

    Side effect of Meds

    Tylenol, [Acetaminophen ] effectives your liver if you go over 3000mg in 24 hrs. 

    Motron [ibuprofen] has a max of 3200mg and it effects your kidneys.

    Bill

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #13
    wmc said:

    Side effect of Meds

    Tylenol, [Acetaminophen ] effectives your liver if you go over 3000mg in 24 hrs. 

    Motron [ibuprofen] has a max of 3200mg and it effects your kidneys.

    Bill

    I didn't know this!!!!

    I didn't know this!!!! Thanks. I'm going to dose up and see if it helps. The pain is hard to handle. I just want it to go away. I am trying to figure out how long it will take before there is some relief!! I really thought by 6 months I would be doing better. It's very frustrating.

    Also, is Motrin considered an anti-inflammatory?

     

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #14
    It takes a long time...

    At least for me anyway.....

    First big hurdle was after a year. Almost two years out now and still improving. 

    Positive thoughts and prayers

    "T"

     

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #15
    fishmanpa said:

    It takes a long time...

    At least for me anyway.....

    First big hurdle was after a year. Almost two years out now and still improving. 

    Positive thoughts and prayers

    "T"

     

    a Thanks "T" for the positive

    a Thanks "T" for the positive thoughts and prayers. This helps. 

  • wmc
    wmc Member Posts: 1,804
    #16
    Bunnymom said:

    I didn't know this!!!!

    I didn't know this!!!! Thanks. I'm going to dose up and see if it helps. The pain is hard to handle. I just want it to go away. I am trying to figure out how long it will take before there is some relief!! I really thought by 6 months I would be doing better. It's very frustrating.

    Also, is Motrin considered an anti-inflammatory?

     

     

    Motrin

    Ibuprofen (Motrin)

    All the same: 



    1. Brand names: Advil, Midol, Motrin, NeoProfen, Caldolor, Ibu

       Nonsteroidal anti-inflammatory drug


    800mg at one time and 3200 max in 24hrs. Yes it does take some time to build up in your system, so don't play cachup.If this does not get rid of the pain or make it tollerable ask your Dr for Norco 5/325, do not taks Vicoden as it has much more Acetaminophen and you can get to the max in a day. I had my Dr change to norco, it's better.

    Bill

     

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    Hi Bunnymom

     

     

    You will get there just sometimes it takes longer with some people then others. My second treatment took almost a year and a little more before things got better, I was just glad for anything at that point. I hope that things will start getting better for you very soon.

     

    Tim Hondo

  • Hondo
    Hondo Member Posts: 6,636 Member
    #18
    wmc said:

    Motrin

    Ibuprofen (Motrin)

    All the same: 



    1. Brand names: Advil, Midol, Motrin, NeoProfen, Caldolor, Ibu

       Nonsteroidal anti-inflammatory drug


    800mg at one time and 3200 max in 24hrs. Yes it does take some time to build up in your system, so don't play cachup.If this does not get rid of the pain or make it tollerable ask your Dr for Norco 5/325, do not taks Vicoden as it has much more Acetaminophen and you can get to the max in a day. I had my Dr change to norco, it's better.

    Bill

     

     

    Hi Bill

     

    I use the Nucynta and Tramadol for pain, somedays when I am hurting and feel like crap it is the only thing that can help me back to my normal. It sucks to be hooked on this stuff but it is a better then hurting and depression.

     

    Tim

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