when do things get better?

Options
15 days post radiation for stage 1v tonsil CA. Had radical tonsillectomy April 2011. Thought I would be getting a little better by now. since 15 days out from radiation. When did you people start to feel a little better? I have sores on tongue and throat. Can't swallow anything due to pain and secretions. Using suction. Have PEG. Was in ER last pm for vomiting and dehydration. I felt better while getting radiaition than I do now. I just am tired of being sick. Wpuld just like to be able to drink a glass of water or sips of water. Just wondering everone's experiences post radiation. I had no chemo.
Jim

Comments

  • arndog64
    arndog64 Member Posts: 537
    Options
    My husband is over 2 months
    My husband is over 2 months out and he is just starting to feel better. Still has a hard time eating. Uses his PEG tube daily.
  • BrianKrashpad
    BrianKrashpad Member Posts: 188
    Options
    worse before better
    From my own experience and what docs told me it does actually get worse right after treatment, before it gets better.

    You are having a rougher go of it than I did, as I was lucky enough to avoid a PEG. But even 6 months out I still have sore spots in my mouth, though I hardly ever have to use magic mouthwash any more (milk is a pretty good substitute for a quick cool-down).

    A BIG thing for me was weaning myself off pain meds and not feeling doped up all the time. This is not an option everyone can pursue, but it was a great step for me.

    Good luck.

    Be well.
  • daveinwoodland
    daveinwoodland Member Posts: 16
    Options
    For mouth sores
    Hi CAjim,

    There is an awesome product out there that while not specifically designed for mouth sores worked wonders for me on a burn I had from dental work and scatter radiation causing the burn. It's called Penzim gel and is a naturally occuring product made from fish. I had a persistent burn that prevented me from eating well and my Dentist had mention this to me as something he had heard of from a colleague.

    I can attest that after 4 or 5 days this product completely healed my burn which up to that point had sat the same for over a month. I had a PEG for many months after treatment as well. I totally can understand just being tired of being sick as I had both radition and chemo at the same time for my Squamous Cell Tonsil CA.

    I still find I have quite a bit of trouble eating without volumes of liquid to help since everything is still so dry. My radiation and chemo ended in December 2010 and while I have made great strides since then it unfortunately is a slow road to getting back. Give yourself the time and don't be too hard of your recovery if you feel it's slow. All the best,

    Dave
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options
    Welcome
    Welcome to the forum....

    Usually you are still cooking for about 3 - 4 weeks post rads, so you probably have a little while longer.

    I feel you with drinking and feeling better. It shouldn't be much longer bud, hang in there.

    I didn't have the PEG, but did have the chemo and rads, it's tough. Pain meds just to numb up the throat long enough to drink water, Ensure and slide a few sliced peaches down.

    Seemed weird to some that you have to numb your throat just to kill the pain enough to drink water...that frankly tasted more like sweat than water.

    It was great to finally drink water again,and it actually quinch your thirst.

    You'll get there....

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options
    Jim
    You should be about peaking now. I was definitely at my worst after radiation ended. Because it's cumulative, you continue to cook and get the side effects keep getting worse. (usually). You should be starting to slowly shift the other way now.

    Also, as far as mouth sores go, you may want to try l-gluatmine powder. Put a heaping tsp in an 8 oz glass of water and swish and swallow. You can usually find the powder in a vitamin store, whole foods place, or a GNC or Vitamin World... Places like that. You can look on the HNC Superthread for links that have info on glutamine.
  • CAjim2011
    CAjim2011 Member Posts: 15
    Options

    Jim
    You should be about peaking now. I was definitely at my worst after radiation ended. Because it's cumulative, you continue to cook and get the side effects keep getting worse. (usually). You should be starting to slowly shift the other way now.

    Also, as far as mouth sores go, you may want to try l-gluatmine powder. Put a heaping tsp in an 8 oz glass of water and swish and swallow. You can usually find the powder in a vitamin store, whole foods place, or a GNC or Vitamin World... Places like that. You can look on the HNC Superthread for links that have info on glutamine.

    Thanks to all who replied. I
    Thanks to all who replied. I am going to try some of the oral remedies you all advised. Did any of you have problem with thick, copious secretions in back of throat? I have to wake up every hour at night to suctin and suction 3-4 times per hour while awake. Just wondering and if so, how long did it last? It's hard to travel anywhere because always feeling like I have to spit up the yellow secretions. Thank you all. You are all in my prayers.

    Jim
  • CAjim2011
    CAjim2011 Member Posts: 15
    Options

    worse before better
    From my own experience and what docs told me it does actually get worse right after treatment, before it gets better.

    You are having a rougher go of it than I did, as I was lucky enough to avoid a PEG. But even 6 months out I still have sore spots in my mouth, though I hardly ever have to use magic mouthwash any more (milk is a pretty good substitute for a quick cool-down).

    A BIG thing for me was weaning myself off pain meds and not feeling doped up all the time. This is not an option everyone can pursue, but it was a great step for me.

    Good luck.

    Be well.

    Hi Brian,
    I'm seeing Pain

    Hi Brian,
    I'm seeing Pain Management for follw up tomorrow and gonna ask them to start weaning me off. think pain meds may have alot to do with my gerneral feeling of sickness.

    Jim
  • CAjim2011
    CAjim2011 Member Posts: 15
    Options

    For mouth sores
    Hi CAjim,

    There is an awesome product out there that while not specifically designed for mouth sores worked wonders for me on a burn I had from dental work and scatter radiation causing the burn. It's called Penzim gel and is a naturally occuring product made from fish. I had a persistent burn that prevented me from eating well and my Dentist had mention this to me as something he had heard of from a colleague.

    I can attest that after 4 or 5 days this product completely healed my burn which up to that point had sat the same for over a month. I had a PEG for many months after treatment as well. I totally can understand just being tired of being sick as I had both radition and chemo at the same time for my Squamous Cell Tonsil CA.

    I still find I have quite a bit of trouble eating without volumes of liquid to help since everything is still so dry. My radiation and chemo ended in December 2010 and while I have made great strides since then it unfortunately is a slow road to getting back. Give yourself the time and don't be too hard of your recovery if you feel it's slow. All the best,

    Dave

    Hi Daviein woodland,
    thanks

    Hi Daviein woodland,
    thanks for your reply. Where do I get Penzim? Is it prescription? Thanks in advance,
    Jim
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options
    CAjim2011 said:

    Thanks to all who replied. I
    Thanks to all who replied. I am going to try some of the oral remedies you all advised. Did any of you have problem with thick, copious secretions in back of throat? I have to wake up every hour at night to suctin and suction 3-4 times per hour while awake. Just wondering and if so, how long did it last? It's hard to travel anywhere because always feeling like I have to spit up the yellow secretions. Thank you all. You are all in my prayers.

    Jim

    Yes, mucus from hell is
    Yes, mucus from hell is normal. It's so lovely trying to be lady like hacking up yellow stuff and spitting into a napkin and carrying around a spit cup. :-/ I also kept towels over my pillow cases at night because that yellow crud stains. At my peak I was going through a package of 100 Vanity fair napkins a day. My step mom got me the jumbo industrial package from Sam's Club.

    Mine lasted quite a while. Way too long, but it took me forever to heal. Most people just a couple to three maybe four months. It took me six.
  • CAjim2011
    CAjim2011 Member Posts: 15
    Options

    Yes, mucus from hell is
    Yes, mucus from hell is normal. It's so lovely trying to be lady like hacking up yellow stuff and spitting into a napkin and carrying around a spit cup. :-/ I also kept towels over my pillow cases at night because that yellow crud stains. At my peak I was going through a package of 100 Vanity fair napkins a day. My step mom got me the jumbo industrial package from Sam's Club.

    Mine lasted quite a while. Way too long, but it took me forever to heal. Most people just a couple to three maybe four months. It took me six.

    Thank you for your reply
    Thank you for your reply Sweetblood. It sucks, but sometimes just knowing it's an expected thing helps me. I didn't know if it was just me with this severe of thick copious mucus, but it sounds like you have or had the same severity as me and everything you described is what I am experiencing. God Bless.
    Jim
  • gibkoch
    gibkoch Member Posts: 19
    Options
    CAjim2011 said:

    Thank you for your reply
    Thank you for your reply Sweetblood. It sucks, but sometimes just knowing it's an expected thing helps me. I didn't know if it was just me with this severe of thick copious mucus, but it sounds like you have or had the same severity as me and everything you described is what I am experiencing. God Bless.
    Jim

    Post radiation experience ...
    Jim,

    I just completed treatment May 7, 2011. My goal was to drink 1 bottle of water after the first week post rad. That didn't happen until week 3. I was hoping to get rid of the PEG tube by week 3. Didn't happen until week 6 and even that was probably early. The mucus sucked beyond belief. Could not believe how much of that stuff I could produce. The mouth sores were the worst of it all. For me, it was hard to comprehend how long it was taking to start feeling better even though I was no longer receiving any treatment. So know that what your feeling and describing appears to be aligned w/the same thing I went through.

    My input is to hang in there and know that it *will* get better. For the mouth sores, I will tell you what worked for me but it was kind of over the top. I saw, either on this board or somewhere else to do a 50/50 mixture of hydrogen peroxide and water. I'm telling you that my sores were so bad that I had to give it a whirl. It was a God send for me. I put the mixture in a small cup, dipped a q-tip into it and then applied to my sores and of course spit it out after application. In a couple days the relief was beyond anything else tried. I told my oncologist assistant about it and she was quite freaked but said as long as it was diluted then it was probably ok. I didn't care. It worked for me.

    I wish you the best and will pray for your *total* healing. Take care and God Bless.

    Gib
  • Hondo
    Hondo Member Posts: 6,636 Member
    Options
    Hi Jim
    It will take a little more time before you start to see things change but don’t let that get you down. You have the hard part behind you now and so you body is now starting the healing part inside. For most of us it is between 2 to 4 months but everyone is different and some get taste back sooner than others. Mouth sores can come back up to a year or two sometimes but for most just a few months. Everyday your body is getting better and better and soon you will look back at it as just a bad memory.

    Wishing you the best
    Hondo
  • CAjim2011
    CAjim2011 Member Posts: 15
    Options
    Hondo said:

    Hi Jim
    It will take a little more time before you start to see things change but don’t let that get you down. You have the hard part behind you now and so you body is now starting the healing part inside. For most of us it is between 2 to 4 months but everyone is different and some get taste back sooner than others. Mouth sores can come back up to a year or two sometimes but for most just a few months. Everyday your body is getting better and better and soon you will look back at it as just a bad memory.

    Wishing you the best
    Hondo

    Thank you for the input
    Thank you for the input Hondo. Your input and input of others gives me a general timeline I can follow and expect. Thanks to everyone and good luck.

    Jim