Nasopharyngeal Carcinoma

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  • johnlax38
    johnlax38 Member Posts: 136
    #22
    timreichhart said:

    I am all done with my cancer treatments
    John your still doing your cancer treatments? because I am all done with chemo and radiation already. because I started chemo first then radiation last. Also are you still working or not during this whole process? because right now I am not working but on FMLA right now which is about ready to run out so soon as that runs out I am going to see if I can get short-term disability insurance. Due to I cant really talk due the radiation burns to the throat area. If any wanted to know what I do for work I do tech support for a local area ISP.

    Also John what kind of meds are you taking? because the chemo doc and radiation doc give me these meds:
    Salagen 5MG tablets post to help with mucus?
    Xanax 5MG post to help with sleeping problems at night
    Tessalon 100MG to help with cough
    Ativan 1MG to help for nausea
    Fentanyl Patches 25mcg/h help with pain
    Compazine 10MG help with nausea

    I probably spent over 300 dollars for meds its unreal how much money you spend for these meds.

    I have one more chemo
    I have one more chemo treatment go go still, Aug 30 is my last one with a 5day 5FU bag. I took about two months off with FMLA. I have been working from home. I manage a help desk, so we are in a similar field. I too need to talk a lot and I'm just now able to speak with out pain. I've been working from home now for over a month and I go back to the real grind on or about September 13th.

    The only drugs I am on now are:

    Compazine 10MG, for nausea
    Ativan 1MG, sleeping at night and nausea
    Nystatin, for thrush
    Zofran, for nausea

    How is the Salagen working, never heard of it. I have read several people using the Fentanyl patches, what does it help with?

    Thanks!
  • johnlax38
    johnlax38 Member Posts: 136
    #23
    Michelle H said:

    Good post
    Hi John, thank you for starting this post. I just finished my radiation and chemo treatments last week so I'm just starting the healing process. Your post here and everyone's responses have really helped me in what to expect during the healing process.

    I've had the yucky mucus too which made me throw up this morning (sorry if that was too much information), and have the ringing in my ears/hearing loss which is driving me crazy at this time from the cisplatin. I'm hoping this goes away over time.

    I'm obviously still on the g-tube right now but luckily don't have a whole lot of pain and don't take much pain meds at all. I have some scratchiness in my throat but that's the extent of it except for when I swallow. I do have some minimal pain when swallowing.

    I'm so happy from all of your eating ideas with the soups, etc. That's going to help alot.

    John, it's so good to hear that you are doing well 8 weeks out from treatment. That really gives me something to look forward to!

    Michelle
    37 years old, Throat cancer on base of tongue (HPV+), 36 rad treatments, 3 cisplatin treatments

    I'm glad my post was able to
    I'm glad my post was able to shed some light on what to expect. That was my biggest fear is knowing what is coming down the road. The people that are here are great and have lots to share, don't be afraid to ask questions or post. Heck I threw up the other day coughing up a lung and gaging on the good ol' mucus. It's quite all right to mention it :)

    So far I have been able to eat spaghetti, noodle soups, yogurt, apple sauce, canned fruit, beef-a-roni, ravioli. I'm trying to get off of the feeding tube still. Out of my three meals for the day I use two to three feeding tube feedings. I typically try to eat dinner. The only that is holding me back now is the burning on my tongue and throat, internal. Its not muscle pain but it feels like a paper cut and salt, to give you an idea. So eating all the time is not an option. I think its partially thrush which I just started Nystatin again today to help with it. I try to drink a lot of V8 Fusion juice, has a mixture of fruits and veggies. But it feels like I'm drinking fire, but water afterwards helps.
  • RoundTwo
    RoundTwo Member Posts: 1
    #24
    kimmygarland said:

    Hi John
    So sorry to hear you are having to endure this torture. My husband has hypopharyngeal cancer and was treated with rads/chemo also. Had most of the side effects you listed, and they've all eventually gotten much better. Now he has a reocurrence, but that is a different story....

    He is 8 months out from his original treatment and able to eat most things, has most saliva, mand most taste back.

    Hang in there!

    I would like to talk with you about reocurrence
    Hi Kim - my husband was originally diagnosed with squamous cell nasopharnx cancer in Nov 05 - June 06' was told it was gone. Oct 28th 2009 began passing out - Jan 9th 2010 told the cancer was back. He did 1 gamma knife and 5 chemo therapy treatements - June 2010 told it was smaller - Just last week we had taken him to ER ended up being cellulitis when led to hospitalization, then CT scan and then PET scan with news that it is now larger - man this is a bit much!!!
  • timreichhart
    timreichhart Member Posts: 194
    #25
    johnlax38 said:

    I'm glad my post was able to
    I'm glad my post was able to shed some light on what to expect. That was my biggest fear is knowing what is coming down the road. The people that are here are great and have lots to share, don't be afraid to ask questions or post. Heck I threw up the other day coughing up a lung and gaging on the good ol' mucus. It's quite all right to mention it :)

    So far I have been able to eat spaghetti, noodle soups, yogurt, apple sauce, canned fruit, beef-a-roni, ravioli. I'm trying to get off of the feeding tube still. Out of my three meals for the day I use two to three feeding tube feedings. I typically try to eat dinner. The only that is holding me back now is the burning on my tongue and throat, internal. Its not muscle pain but it feels like a paper cut and salt, to give you an idea. So eating all the time is not an option. I think its partially thrush which I just started Nystatin again today to help with it. I try to drink a lot of V8 Fusion juice, has a mixture of fruits and veggies. But it feels like I'm drinking fire, but water afterwards helps.

    About your post john
    I know how you feel about throwing up I did that yesterday after I got done taking a shower and I don't know why I am keep throwing up for I don't know if its the mucus or what. But I can tell you that my mucus is not bright yellow its more like clear now. I started to have mucus when I had my 4 week into radiation so I don't if its clearing up now or what. But my biggest fear is trying to eat spaghettio's due to throwing it back up or have a flaming mouth/throat. I know I cant drink anything got sugar in it because feels like crap or hurts my mouth since I am still battling with mouth sores under my tongue. As your radiation doctor tell you to take zinc 3 times a day for 3months to regain tease back? I think I am going to start taking 25mg of zinc so I can get some tease back.

    are you guys taking vitiams or not while trying to recover from chemo/radiation?
  • johnlax38
    johnlax38 Member Posts: 136
    #26
    timreichhart said:

    About your post john
    I know how you feel about throwing up I did that yesterday after I got done taking a shower and I don't know why I am keep throwing up for I don't know if its the mucus or what. But I can tell you that my mucus is not bright yellow its more like clear now. I started to have mucus when I had my 4 week into radiation so I don't if its clearing up now or what. But my biggest fear is trying to eat spaghettio's due to throwing it back up or have a flaming mouth/throat. I know I cant drink anything got sugar in it because feels like crap or hurts my mouth since I am still battling with mouth sores under my tongue. As your radiation doctor tell you to take zinc 3 times a day for 3months to regain tease back? I think I am going to start taking 25mg of zinc so I can get some tease back.

    are you guys taking vitiams or not while trying to recover from chemo/radiation?

    Thats the hard part to deal
    Thats the hard part to deal with eating and knowing you may throw it up dealing with the burn. I know what you mean, you don't know why you throw up it just kind of happens. It gets better, the only time I feel sick is after my chemo and I only have one left. On my two off weeks I don't puke unless I'm totally gagging on something nasty. That is good news that your mucus is not yellow or colored, its a good sign you are healing. Sometimes mine has color sometimes not, I wonder what causes the color change? I know in the mornings its kinda of pinkish but thats expected because I keep sleeping with my mouth open and the membranes are probably dry and cracked. I have a similar problem with my tongue that you do still, but its the sides of my tongue and it runs the entire length of it, imagine a soar that covers the length of your tongue? As your mucus begins to get better you will throw up less, I have noticed this. I only spit up maybe once or twice an hour were I use to every 5 minutes. In the past it use to be like handfuls of spit and mucus now its maybe a quarter size or a coin dollar size. I puke a lot less now that I'm not gagging. I can clear my throat and swallow down the mucus most of the time now.

    As far as vitamins are concerned, I still use the tube feeding formula which is packed with vitamins so I don't take any supplements. I was told not too during treatment because they may interact with other drugs. Once I'm done I plan to take Centrum Men's Health vitamins daily.

    You know what I had a craving for today, peanut butter and jelly sandwich and a side of chips with some italian soda. Man the things we miss when we can't eat what we want. In due time though :)
  • charles55
    charles55 Member Posts: 87
    #27
    johnlax38 said:

    Thats the hard part to deal
    Thats the hard part to deal with eating and knowing you may throw it up dealing with the burn. I know what you mean, you don't know why you throw up it just kind of happens. It gets better, the only time I feel sick is after my chemo and I only have one left. On my two off weeks I don't puke unless I'm totally gagging on something nasty. That is good news that your mucus is not yellow or colored, its a good sign you are healing. Sometimes mine has color sometimes not, I wonder what causes the color change? I know in the mornings its kinda of pinkish but thats expected because I keep sleeping with my mouth open and the membranes are probably dry and cracked. I have a similar problem with my tongue that you do still, but its the sides of my tongue and it runs the entire length of it, imagine a soar that covers the length of your tongue? As your mucus begins to get better you will throw up less, I have noticed this. I only spit up maybe once or twice an hour were I use to every 5 minutes. In the past it use to be like handfuls of spit and mucus now its maybe a quarter size or a coin dollar size. I puke a lot less now that I'm not gagging. I can clear my throat and swallow down the mucus most of the time now.

    As far as vitamins are concerned, I still use the tube feeding formula which is packed with vitamins so I don't take any supplements. I was told not too during treatment because they may interact with other drugs. Once I'm done I plan to take Centrum Men's Health vitamins daily.

    You know what I had a craving for today, peanut butter and jelly sandwich and a side of chips with some italian soda. Man the things we miss when we can't eat what we want. In due time though :)

    getting back to eating
    One of the first things I could get down that I could actually swallow without choking was oddly enough, peanut butter mixed with honey (heavy on the honey) and a glass of cold milk. It was heaven, and still is. I never ate that before in my life but I was looking for something with a lot of protein and calories. Even though I am eating well now, I still go back to it when I want to treat myself. It is my way of saying "@$*# on you, cancer; I win."
  • atuck
    atuck Member Posts: 5
    #28
    John,

    John,

    I was diagnosed @ 19yo in 1992. I used to keep a list of foods I wanted to eat when I was through with treatment. As much as I hated the g-tube, it probably saved my life. I threw up everything that went down for my entire 14 months of treatment.

    I spit into a cup during radiation, too. These days, I can;t eat anything without a bottle of water nearby. My mouth is constantly dry. I'm very sensitive to anything spicy! (Here in Minnesota we consider ketchup spicy, so take that with a grain of salt!)

    Everything took time. It really disrupted my life, it was a bad age-like I imagine it is for you, too. God, like there's ever a good age. But, things will get better, some will return to baseline, some just get better then they are now.
  • johnlax38
    johnlax38 Member Posts: 136
    #29
    atuck said:

    John,

    John,

    I was diagnosed @ 19yo in 1992. I used to keep a list of foods I wanted to eat when I was through with treatment. As much as I hated the g-tube, it probably saved my life. I threw up everything that went down for my entire 14 months of treatment.

    I spit into a cup during radiation, too. These days, I can;t eat anything without a bottle of water nearby. My mouth is constantly dry. I'm very sensitive to anything spicy! (Here in Minnesota we consider ketchup spicy, so take that with a grain of salt!)

    Everything took time. It really disrupted my life, it was a bad age-like I imagine it is for you, too. God, like there's ever a good age. But, things will get better, some will return to baseline, some just get better then they are now.

    Thanks for your insight
    Thanks for your insight atcuk I appreciate it!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #30
    johnlax38 said:

    Thanks for your insight
    Thanks for your insight atcuk I appreciate it!

    Tim
    A belated welcome to you, from another NPC. From what you write, you seem to be doing pretty good. My Chemo delivery was a bit different, and only needed 31 full rads, along with the last 3 partials; and, as for the eating- took me about 6 months to get to the point that I could tolerate almost anything. Taste will be different, of course, than before, but it's a learning part of the experience, so to speak. Glad you are with us, and hope you will stay active- success stories, and support and helping others from what we have learned, is what we are all about.

    kcass

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