So Tired

mixleader
mixleader Member Posts: 267 Member
in Head and Neck Cancer #1
Well, it's week four of my chemo by pill. This is the second week at maximum dosage and it is kicking my butt. I am extremely fatigued and I get winded easily. And, my tongue is so sensitive that I had to change to a kid's toothpaste and I can't eat anything hot or spicy. And, the worst part is that diet Coke hurts to drink. How the heck could I possibly survive without diet Coke? :-) So, if I let them sit open and de-fizz, it helps. I see my cancer Doc this Wednesday and we will see if I stay on this dosage or reduce it somewhat. I am using the salt/baking soda mouthwash and the 'magic mouthwash' and that makes the tongue pain bearable, just very annoying. The fatigue is the worst part of this right now. I am hoping and praying that the fatigue/breathlessness is due to the medication and not to the beast continuing to grow. I will know more about that in about three weeks when I get scanned again. In the meanwhile, it seems like friends and other people I know are dropping like flies here locally. That sure makes me anxious as well. But, through it all, I am at least coping with all of this crap and I look at every day as being special. Okay, I'm done rambling now...I'm just really, really, worried about the future. But, most of you know about that, don't you?

Roger

Comments

  • osmotar
    osmotar Member Posts: 1,006
    #2
    Brushing Teeth
    I've found the biotene toothpaste works well for me, I switch out between a childs toothbrush and a soft adult toothbrush, then the biotene mouthwash. After each chemo infusion, using the biotene and then swishing with the salt/baking soda solution seems to keep my mouth pretty healthy.

    Linda
  • mrapp
    mrapp Member Posts: 30
    #3
    Tired
    Hey Roger

    All I can really say is hang in there. I would like to tell you that it is going to get better and yes it will get better, but its probably going to get a little worse before it gets better. These discussion boards is a great place to hang out and get a lot of answers. I spent many hours on here and praying. I will pray for you tonight. I hope you give updates to your condition and how things are.

    Mitch
  • Pumakitty
    Pumakitty Member Posts: 652
    #4
    Hugs
    Hang in there. Just remember every pill is a strike against this horrible beast. Hope you start feeling better soon.

    Kathy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Yoooo Brooo
    It's tough but you know how to handle it and get through.

    I know it doesn't help, but you know worrying about it doesn't do you any good. Nothing will change from worry other than stress you out.

    You are sticking to the plan and doing all that you can...you just have to have faith that this treatment will throw the fatal blow to the cancer.

    Stay strong, get rest, be positive and kick azz....oh, and stay hydrated, LOL...

    Best,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
    Questions
    Roger most everyone questions the treatment plan at some point, this is very normal

    I agree with earlier post, Biotene toothpaste is best now and continue on with it forever.

    Try Mug Root Beer, seems to be the only soda that works for me. Even the other root beers do not work.

    Attitude, Attitude, Attitude..... keep it up, it is second most important thing you can do, only second to Praying.

    Prayers for wisdom and strength.

    John
  • Greend
    Greend Member Posts: 678
    #7
    Don't let it win
    All have been there and you know you can't let the SOB win. A day, and hour or a minute at a time just keep plugging. By the way, when you get tired then REST. :>)

    Denny
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Hi Roger

    I am just glad to hear that you are doing so well on the pill. You knew it would be hard going into it but you are a champ so keep up the hard work. You will get over the fatigue and tiredness that is all part of the treatment, it lets you know the treatment is working overtime.

    Keeping you in prayer
    :+)
    Hondo
  • robinleigh
    robinleigh Member Posts: 297
    #9
    We relate
    First of all, my husband and I are sitting here speechless with fear of hearing scan results tomorrow for metastatic scc. If I'm correct, you are treating a recurrence, as well? Becomes a whole new level of war so our hearts truly go out to you. Mindset...never give up...give it all you've got!

    Secondly, the fatigue is so hard and I just asked Andy if he wanted to go for a stroll because, you know they say exercise is the best wat to counter the tiredness. Anyway, he said no because he's just too down tonight...understandably.

    Third...we have all of the mouth remedies you mentioned but now have one that md Anderson uses called Ulcer Ease. Andy likes it better than the others. Of course, only some temporary relief. It is an over-the-counter product but not so easy to find. We had to get a pharmacist to order it.

    Do not know anything about the pill you are on. Maybe you could tell me about it sometime when you're feeling well enough. Thank you!

    Hope you are feeling better soon,
    Robinleigh
  • nwasen
    nwasen Member Posts: 235 Member
    #10
    so tired
    Roger,
    It is a tired like you have never felt before I am guessing. I know when it washed over me I had better lie down now. Like the best description I can think of is bone weary. I learned to just get comfy and sleep or rest till the feeling was gone.
    I was a huge Coke or ginger ale drinker. Now I have maybe a can a week. The fizziness bothers me still and I am out of treatment since before Xmas. It really isn't good for you anyways, at least that it is what I tell myself! I am a huge water drinker and also drink quite a bit of milk.
    My mom used to say "this too shall pass" and it is true. It is a brutal thing to do thru. Someone said it is like they tear the house down and then rebuild, one room at a time.
    Hang tough and know many of us are here to cheer you on and help if we can.
    Peace
    nancy aka toughcookie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    robinleigh said:

    We relate
    First of all, my husband and I are sitting here speechless with fear of hearing scan results tomorrow for metastatic scc. If I'm correct, you are treating a recurrence, as well? Becomes a whole new level of war so our hearts truly go out to you. Mindset...never give up...give it all you've got!

    Secondly, the fatigue is so hard and I just asked Andy if he wanted to go for a stroll because, you know they say exercise is the best wat to counter the tiredness. Anyway, he said no because he's just too down tonight...understandably.

    Third...we have all of the mouth remedies you mentioned but now have one that md Anderson uses called Ulcer Ease. Andy likes it better than the others. Of course, only some temporary relief. It is an over-the-counter product but not so easy to find. We had to get a pharmacist to order it.

    Do not know anything about the pill you are on. Maybe you could tell me about it sometime when you're feeling well enough. Thank you!

    Hope you are feeling better soon,
    Robinleigh

    Hi Robinleigh

    Just hoping and praying that your scan results today are good, but even if they are not just remember never give up hope. Keep fighting keep positive and keep moving forward.

    Hondo
  • mixleader
    mixleader Member Posts: 267 Member
    #12
    robinleigh said:

    We relate
    First of all, my husband and I are sitting here speechless with fear of hearing scan results tomorrow for metastatic scc. If I'm correct, you are treating a recurrence, as well? Becomes a whole new level of war so our hearts truly go out to you. Mindset...never give up...give it all you've got!

    Secondly, the fatigue is so hard and I just asked Andy if he wanted to go for a stroll because, you know they say exercise is the best wat to counter the tiredness. Anyway, he said no because he's just too down tonight...understandably.

    Third...we have all of the mouth remedies you mentioned but now have one that md Anderson uses called Ulcer Ease. Andy likes it better than the others. Of course, only some temporary relief. It is an over-the-counter product but not so easy to find. We had to get a pharmacist to order it.

    Do not know anything about the pill you are on. Maybe you could tell me about it sometime when you're feeling well enough. Thank you!

    Hope you are feeling better soon,
    Robinleigh

    Good Luck
    Hi, Robinleigh. I wish you the best of luck on the results of the scan. I know how scary this is as I am treating a recurrence. My parotid cancer has spread to my lung and lower back. The pill I am on is normally used for kidney cancer and it is called Sutent. A genetic workup of my tumor showed that it should attack my tumors. Well, the results are not known yet and I am in high hopes that this works. Hang tough and I'm sure a lot of people are praying for good results for you.

    Roger
  • mixleader
    mixleader Member Posts: 267 Member
    #13
    So Tired
    As always, thanks for all the comments and support as it means a lot. Yes, this fatigue is beyond anything I have ever experienced. A few times, I had to crawl to/from the bathroom and kitchen. I was at a local supermarket and for a while during my shopping, I got so tired that I wasn't sure I could make it back to my car. I did, thankfully, and decided not to do that again unless my wife was with me. I see my cancer doc tomorrow to discuss these side effects.

    Roger
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    mixleader said:

    So Tired
    As always, thanks for all the comments and support as it means a lot. Yes, this fatigue is beyond anything I have ever experienced. A few times, I had to crawl to/from the bathroom and kitchen. I was at a local supermarket and for a while during my shopping, I got so tired that I wasn't sure I could make it back to my car. I did, thankfully, and decided not to do that again unless my wife was with me. I see my cancer doc tomorrow to discuss these side effects.

    Roger

    Crawl....
    Crawl to the bathroom, I can relate to that...but of course that was way back when I thought I was a drinker fresh out of high school and into the Marine Corps, LOL....

    Hopefully they might reduce you back a little on the meds, or find something that works.

    It sounds like you found your max tolerance level on the dosage they are giving you now.

    Best,
    John
  • Greend
    Greend Member Posts: 678
    #15
    mixleader said:

    So Tired
    As always, thanks for all the comments and support as it means a lot. Yes, this fatigue is beyond anything I have ever experienced. A few times, I had to crawl to/from the bathroom and kitchen. I was at a local supermarket and for a while during my shopping, I got so tired that I wasn't sure I could make it back to my car. I did, thankfully, and decided not to do that again unless my wife was with me. I see my cancer doc tomorrow to discuss these side effects.

    Roger

    OJT
    Roger,

    Had to smile, I told everyone that my 20 years in the military and the "few" times I had a bit too much to drink was OJT (on the job training) for being able to crawl to the toilet, worship the porcelain goddess, and not make a mess on the floor even from two feet away. :>)
  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    mixleader said:

    So Tired
    As always, thanks for all the comments and support as it means a lot. Yes, this fatigue is beyond anything I have ever experienced. A few times, I had to crawl to/from the bathroom and kitchen. I was at a local supermarket and for a while during my shopping, I got so tired that I wasn't sure I could make it back to my car. I did, thankfully, and decided not to do that again unless my wife was with me. I see my cancer doc tomorrow to discuss these side effects.

    Roger

    Crawl to the bathroom

    Yep ben there done that one before and a few times afterwards as well. Roger don’t let it get you down as you see my friend it happened to a lot of us, wishing you well tomorrow seeing the doctor. Have him check your Thyroids

    Keeping you in pray
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #17
    Hondo said:

    Crawl to the bathroom

    Yep ben there done that one before and a few times afterwards as well. Roger don’t let it get you down as you see my friend it happened to a lot of us, wishing you well tomorrow seeing the doctor. Have him check your Thyroids

    Keeping you in pray
    Hondo

    Crawling to the bathroom.
    Yep. Been there done that. There was a point during treatment and recovery, that I could hardly get out of bed to use the restroom or feed myself. Taking a shower was like running a marathon. :(

    Praying for you everyday, Roger.

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