nothing new really

micktissue
micktissue Member Posts: 430
edited March 2014 in Head and Neck Cancer #1
Hi all. I am still waiting for positive change to happen now +11 days post treatment. Mucus is still public enemy #1 and mouth sores still keep me awake at night (along with the mucus).

I'm telling the Dr next week that I want my mouth issues to be reevaluated because I'm not happy with where I am. If I need to be doing something different I want them to tell me what that is. So far I've been told "you're doing great" and to expect end of April to see the "turning of a corner".

Best,

Mick

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
    Mouth issues
    Are you still doing Magic Mouthwash? My Onco had me on a "Nystatin" swish and spit liquid, also. By my 2nd-week, after the last rad, Mick, I was able to drink Ensure. Pancakes were still aways away. A call for patience, maybe. Does take time. Would NOT discourage you to make an issue about it with your Docs, though.

    My "turning the corner" happened in the hospital during week #6 (of 8), and still on morph, and running a fever. For me, Mick, it was just something inside that convinced me the worst was over, and my body was now dealing in only the positive. I still had two weeks of full H&N rads to go, having been incapable of any in #5&6. I mean, I was still having to deal with the rad effects, but those paled in comparison to where I been, you know. Saying this, Mick, I also tell you that my post-treatment happened fast, and I did return to work a month after the last rad. By then, I had used my PEG for the last time, and was on the Ensure diet, with a multi-vitamin, and nibbling on what I could tolerate. The sores in my mouth were gone- except for the sides of my tongue caused by contact with skeletal exposure as a result of gum tissue loss by my lower-back teeth (canker sores). For me, the mouth sores were pretty-much healed shortly after the last rad. Consider that, and how bad it got for me- the sores extending from my mouth to blisters on my lips, and "scalding" of the tongue, when my Chemo regime was doing it's thing with the rads. You should be healing soon, Mick. That is my opinion. And if you aren't- would let your Drs. know you are "aware," and it is an issue.


    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Mick
    The mucus and mouth sores may take a while longer as you might still be slightly cooking some on the inside. My turning point took almost 6 weeks after my last treatment before things started to really get better and some taste came back and when it did all I wanted to do was to eat.

    Wishing you the best
  • GRAVEY
    GRAVEY Member Posts: 83
    #4
    Yeah, the worst of my sores
    Yeah, the worst of my sores were on the sides of my tongue. I was working 2 months after my last rad. We all have it different, but know that there is an end to the crap. Check and make sure some of the mouth issues arent thrush, I got it three times at the end, and twice after my last treatment. I took diflucan 2 pills the first day, 1 a day for ten days after.
    God speed.

    GRAVEY
  • staceya
    staceya Member Posts: 720
    #5
    GRAVEY said:

    Yeah, the worst of my sores
    Yeah, the worst of my sores were on the sides of my tongue. I was working 2 months after my last rad. We all have it different, but know that there is an end to the crap. Check and make sure some of the mouth issues arent thrush, I got it three times at the end, and twice after my last treatment. I took diflucan 2 pills the first day, 1 a day for ten days after.
    God speed.

    GRAVEY

    I am about 3 weeks ahead of
    I am about 3 weeks ahead of you, and it has been slow going. Lots of things either still burn, or scratch or clog etc. The mucus did get better approx 3 weeks post rad.
    I am sticking with boost mixed 1/2 with milk (makes it less sticky) jello (even though it is of no real value, but very soothing) I am eating some rice crispies which are not painful. I know it is hard to be patient (I am not) At this point, the pain and mucous are much better, but the eating is still not good.
    Good luck!
    Stacey
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Keep Hanging in the Mick
    Unfortunately it just takes time....

    I always told everyone at the time I was diagnosed "other than having cancer, I'm in perfect health". That being said, I am just usually not sick. So to deal with this so long was rough on me as well. It took a good 4 - 6 weeks probably for me to at least start feeling somewhat better. I'm now almost 10 months out and just starting to feel like my old self. I'm not getting as tired in the evening, although I still do have a little more fatigue than I used too. But everything else for the most part is doing great.

    You'll get there, it just takes time. When I first finished, I must have seen my ENT every few weeks complaining of something or a strange feeling. I guess a lot of that was paranoia, but he was very good with me, reassuring me that it was just residual and would be there for awhile. But also that it was good to be aware of changes and stay up on knowing your body.

    It's hard when I've had 50+ years of knowing my body and now that things have changed, I'm having to start learning the new "normal" me.... Not quite there yet, I'm a work in progress at this point, LOL....

    Keep on hangin Mick, it'll come.
    John
  • Fire34
    Fire34 Member Posts: 365
    #7
    Skiffin16 said:

    Keep Hanging in the Mick
    Unfortunately it just takes time....

    I always told everyone at the time I was diagnosed "other than having cancer, I'm in perfect health". That being said, I am just usually not sick. So to deal with this so long was rough on me as well. It took a good 4 - 6 weeks probably for me to at least start feeling somewhat better. I'm now almost 10 months out and just starting to feel like my old self. I'm not getting as tired in the evening, although I still do have a little more fatigue than I used too. But everything else for the most part is doing great.

    You'll get there, it just takes time. When I first finished, I must have seen my ENT every few weeks complaining of something or a strange feeling. I guess a lot of that was paranoia, but he was very good with me, reassuring me that it was just residual and would be there for awhile. But also that it was good to be aware of changes and stay up on knowing your body.

    It's hard when I've had 50+ years of knowing my body and now that things have changed, I'm having to start learning the new "normal" me.... Not quite there yet, I'm a work in progress at this point, LOL....

    Keep on hangin Mick, it'll come.
    John

    Was Wondering
    Mick
    Was wondering how you were doing had heard from you in a while. My mouth took about a month and a half to get back to the new normal. I was told on discharge that baking soda and salt water would help the mucous and it did a little. Just hang in there at least you are finished with treatments Best Wishes
    Dave
  • Pam M
    Pam M Member Posts: 2,196
    #8
    Little Ahead of You
    Mick,

    I'm at 27 days post-chemorads. At my 2 week follow-up, I let my dr. know I was frustrated by my inability to eat (if you can't eat, you can't get the PEG removed). Throughout treatment, I've been told by my drs that my body was withstanding treatment in a spectacular fashion - I've fared better than the vast majority. I feel that way, as well, when I read everyone else's stories. So, since I've been "lucky" in treatment, I assumed I should recover more quickly. I gave up for several days, then last week tried some cereal (Frosted Flakes)in milk. It hurt, but mostly went down (yeah, it got hung - everything does - argh). It gave me momentum. The next day, I did scrambled eggs and 1/2 a piece of raisin toast (no crust) and a few bites of waffle. That was my greatest success - I still can't eat enough to consider ditching the PEG - maybe I'll try to switch from PEG to liquid nutrition to supplement my food-nibbling. But, the great move forward happened after I'd become despondant over my lack of success. Hope it happens the same way for you.

    When I was hospitalized in Dec (neutropenic fevers), I had a few bad mouth sores. One of the docs told me we'd just have to wait them out, and they'd go away when they went away. I already am having a hard time remembering (yay), but I think I had them about 3 weeks - doc said it could've been a couple months - hope that's not your story. When my mouth sores started clearing, they healed up pretty quickly.

    Keep plugging along (I KNOW you will, but had to say it, anyway). I really can't give you advice on how to recover from your chemo-rads - since I had induction chemo, I only had one chemo drug(carboplatin) during my rads, so it was easier for me. For me, though, it did come, even though it wasnt' on my timetable. I'm already looking forward to/dreading the day (coming soon) when I can start cooking the foods I should eat, as opposed to the ones I think I can chew and swallow.
  • Pam M
    Pam M Member Posts: 2,196
    #9
    Little Ahead of You
    Mick,

    Oops, not only did I ramble endlessly in my post - I double-posted!
  • stevenl
    stevenl Member Posts: 587
    #10
    corner
    Hey Mick,

    Sorry you are not seeing improvement faster. I just don't know what to say man. I finished my treatment Friday, and the mucous is bad for me as well, but nothing like what you are going through.
    I mean I could give you all the crap you are tired of hearing the hopes and wishes and all that B.S.

    The only way I can control the mucous is with Caphasol And unfortunately, a dose of hydro codone. I also wake up at night once or twice with the damn hacking hysteria, and oh what a joy that is. Hell the dogs even begin to wail at times. Don't know if they feel bad for me or if I am hurting their ears. :)

    So far "You're doing great" would be really angering me by now too. There has to be some single or combo deal they can give you to get enemy #1 under control and at least bearable, if not gone. So go give 'em a little of the Irish boot in the butt and see how that works.

    Best always man,
    Steve
  • delnative
    delnative Member Posts: 450 Member
    #11
    stevenl said:

    corner
    Hey Mick,

    Sorry you are not seeing improvement faster. I just don't know what to say man. I finished my treatment Friday, and the mucous is bad for me as well, but nothing like what you are going through.
    I mean I could give you all the crap you are tired of hearing the hopes and wishes and all that B.S.

    The only way I can control the mucous is with Caphasol And unfortunately, a dose of hydro codone. I also wake up at night once or twice with the damn hacking hysteria, and oh what a joy that is. Hell the dogs even begin to wail at times. Don't know if they feel bad for me or if I am hurting their ears. :)

    So far "You're doing great" would be really angering me by now too. There has to be some single or combo deal they can give you to get enemy #1 under control and at least bearable, if not gone. So go give 'em a little of the Irish boot in the butt and see how that works.

    Best always man,
    Steve

    Like others said
    You've got to give it some time, Mick. You're in the worst stage right now. If your experience is like mine, it might get a little worse for a few more days, maybe a week -- two weeks tops -- but then you'll turn the corner. Things will slowly get better.
    Keep the faith, bro'. I know it sucks, but this too shall pass.

    --Jim in Delaware
  • fsdman
    fsdman Member Posts: 51
    #12
    Mick,
    My docs told me
    Mick,
    My docs told me that the damage would continue to happen for about 2 weeks after treatments were over. So improvement couldnt begin for at least 2 weeks. I found I felt worse the first few weeks. Then I woke one day and I actually noticed some improvement in some areas.Time is the true healer. 12 months post now. I almost cant remember how bad things were- almost !
    Good luck
  • Scambuster
    Scambuster Member Posts: 973
    #13
    fsdman said:

    Mick,
    My docs told me
    Mick,
    My docs told me that the damage would continue to happen for about 2 weeks after treatments were over. So improvement couldnt begin for at least 2 weeks. I found I felt worse the first few weeks. Then I woke one day and I actually noticed some improvement in some areas.Time is the true healer. 12 months post now. I almost cant remember how bad things were- almost !
    Good luck

    Mick + Glutamine
    Hi Mick,

    Apologies for repeating this again but you may find the Glutamine Powder will help with your injured mouth and tongue. I have pasted below a couple of paragraphs from the Wikipedia page. While its' anti-burn effects are immediate and helpful to relief pain and burning offers some soothing for the mouth, the healing effects are harder to feel any effects. As you have been through the wringer, you are damaged at the moment - but this stuff is shown to help your body heal.

    2-3 Teaspoons a day.

    Remember the alternatives to Dairy will also aid reducing the mucus ie SOY, RICE and ALMOND (NUT) Milks are all good. Also the Fluimucil mentioned worked great for me reducing mucus.

    Hang in there matey. it's possibly the worst time of all right now. You're going to get better though.

    Cheers
    Scam.

    - Extract from Wikipedia -

    Examples for the usage of glutamine

    In catabolic states of injury and illness, glutamine becomes conditionally-essential (requiring intake from food or supplements). Glutamine has been studied extensively over the past 10–15 years and has been shown to be useful in treatment of serious illnesses, injury, trauma, burns, and treatment-related side-effects of cancer as well as in wound healing for postoperative patients.[8] Glutamine is also marketed as a supplement used for muscle growth in weightlifting, bodybuilding, endurance, and other sports, yet there is still no scientific evidence of its "muscle-growing" properties. [9]. In biological research, L-glutamine is commonly added [10]to the media in cell culture.

    Aiding recovery after surgery

    It is also known that glutamine has various effects in reducing healing time after operations. Hospital-stay times after abdominal surgery can be reduced by providing parenteral nutrition regimes containing high amounts of glutamine to patients. Clinical trials have revealed that patients on supplementation regimes containing glutamine have improved nitrogen balances, generation of cysteinyl-leukotrienes from polymorphonuclear neutrophil granulocytes, and improved lymphocyte recovery and intestinal permeability (in postoperative patients), in comparison to those that had no glutamine within their dietary regime, all without any side-effects.[11]

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