My radiation journey - Week 4

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  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #22
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    Steve, you mentioned food

    Steve, you mentioned food texture being off.  What did you mean?  feels gritty? 

  • stevenpepe
    stevenpepe Member Posts: 234
    edited June 2016 #23
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    LiseA said:

    Steve, you mentioned food

    Steve, you mentioned food texture being off.  What did you mean?  feels gritty? 

    My tongue being burned makes

    My tongue being burned makes food feel unappealing. Hard to describe but it just feels off.

    I can still eat pasta fine, just without the sauce. I eat it with lentils or olive oil with basil and oregano.

  • LiseA
    LiseA Member Posts: 266
    #24
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    I'm surprised that with the

    I'm surprised that with the amount of water I drink, and fhe rinses, both glutamine and soda, which i alternate during the day, I'm getting sores in upper and lower lips!  I assume they are sores Because they are white and painful. My tongue is doing a number on me also. There is nothing to heal these during treatment???  

     

  • stevenpepe
    stevenpepe Member Posts: 234
    #25
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    LiseA said:

    I'm surprised that with the

    I'm surprised that with the amount of water I drink, and fhe rinses, both glutamine and soda, which i alternate during the day, I'm getting sores in upper and lower lips!  I assume they are sores Because they are white and painful. My tongue is doing a number on me also. There is nothing to heal these during treatment???  

     

    No. You won't stop them. But

    No. You won't stop them. But the rinses will help them heal a little faster and keep your mouth clean. More will come and it will become more challenging to eat. That is when you will see which foods work for you. They become softer as you move along.

  • LiseA
    LiseA Member Posts: 266
    #26
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    Steve, if it's any

    Steve, if it's any consolation at all, your presence here is helping to keep me from saying I CANNOT DO THIS.  Thank you!  

  • stevenpepe
    stevenpepe Member Posts: 234
    #27
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    LiseA said:

    Steve, if it's any

    Steve, if it's any consolation at all, your presence here is helping to keep me from saying I CANNOT DO THIS.  Thank you!  

    I am happy to help you

    I am happy to help you through this process. There are lots of helpful folks here, many of whom, I owe sincere thanks, as well.

  • donfoo
    donfoo Member Posts: 1,771 Member
    edited June 2016 #28
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    when solids become too much

    Rather than going to all liquid and blended diet when swallowing solids becomes too much, get one of the cheap baby food grinders and it makes the food much easier to swallow. By the time your throat is so sore, it is not like it becomes no problem. More like it allows you to continue on solids for a bit longer, should you desire.  Good luck and hang in there.

  • MrsBD
    MrsBD Member Posts: 615 Member
    #29
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    Eating

    It will take time, but most of us are able to eat normally eventually. I was able to have most anything around 8 months after treatment. Tomato sauces are no problem, but fresh pineapple and papaya are still too acidic at 20 months out. Surprisingly, ice cream was the only food that had lost flavor, but it started to taste good again about three months ago. It may be due to having had acupuncture specifically designed to preserve salivary gland function that I don't have major issues with dry mouth or loss of taste. It definitely did not help with mucositis which is why I switched to mostly liquids around the sixth week of treatment. Hang in there!

  • Fritz
    Fritz Member Posts: 106
    #30
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    Steven:

    Steven:

    I am new here and have been following you since your first post. Your weekly updates have been very helpful to me in planning my own treatment plan. Quick question. Do you know how many zones are targeted with your IMRTs?  I have Stage IVA Tonsil cancer whereby both tonsils, slice of tongue base and slice of soft palate were removed in surgery. I have 7 different zones being targeted during my session. Now I am 13 of 33 rads complete with 3 of 6 Cisplatin chemo infusions complete. I just wanted to compare your radiation to mine so as to tweak my side effects plan if any.

    Thanks in advance and thanks again for sharing your experiences.

    Freddie

  • LiseA
    LiseA Member Posts: 266
    #31
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    Fritz, I didn't even know

    Fritz, I didn't even know about asking how many zones they were targeting. All I know is that there are 32 sessions, and they added 14 to the front of my neck. It's all been super confusing for me as my radiation oncologist  very silent but supposed to be good. He barely answers questions. Thanks for bringing that up. I've done 14 so far.  How are you feeling? Any mouth issues yet?

  • RottiesMom
    RottiesMom Member Posts: 167
    #32
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    I have Stage IV A tonsil cancer too

    I start Chemo Tuesday and radiation June 27.  I just had my feeding tube put in this afternoon.  The Dr wanted to keep me overnight for observation.  Fritz how are you doing with the cisplatin?   That will be my chemo drug too.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited June 2016 #33
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    Fritz, that's a good question

    Fritz, that's a good question. I honestly don't know. I do know they are targeting my tongue, where the tumor was, and both sides of the front of my neck. It's amazing how targeted the machine is. I have a perfectly white stripe going down my throat, splitting the red radiation burns on both sides of my neck. My throat is not being radiated. Cool stuff. Even though I'd rather not have it. 

  • LiseA
    LiseA Member Posts: 266
    #34
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    It is indeed cool stuff, this

    It is indeed cool stuff, this targeting.

    They let my husband go back with me to see the setup until they were ready to cook me. He had no idea what all I was having to do. The mask isn't scary, but it's damn uncomfortable.  And the mouth piece sticks to the sores in my mouth when time to take it out. 

  • Fritz
    Fritz Member Posts: 106
    #35
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    Yeah, one of my radiation

    Yeah, one of my radiation techs actually showed me the computer programming of my treatment zones.  Interesting stuff.  Mine practically wraps around my entire neck with each angle zapping more or less radiation at me.  It basically uses the CT scan done prior to treatments to map out the tissues they want to direct and those they want to try and save (salivary, etc).  Then all of this is programmed into the machine and it does its thing.

    As far as the chemo Cisplatin,  I wish I could say it was not so bad, but I would be lying.  I usually feel like crap for the 2 - 3 days following infusion days.  It seems to intensify the mucous development in the throat.   It is a very toxic drug and I am sorry to say you will feel the effects from it.  It does pass, but life can be miserable during the immediate days following.  It is a struggle to drink what you should drink to help flush this from your kidneys, but the more you do the better you will recover from it.

    Thanks to all for your useful information.

    Freddie

  • LiseA
    LiseA Member Posts: 266
    #36
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    Rottiesmom, tomorrow is the

    Rottiesmom, tomorrow is the big day? I'll be thinking of you.  Best of luck. Let us know what's going on with you.

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