I am so meesed up. need help

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mehrdad357
mehrdad357 Member Posts: 66
in Head and Neck Cancer #1

I have H&N cancer stage 4b, primary BOT. my treatment is Erbitux & Radiation. Things were going OK, that is I only had some side effects of Erbitux all of which were contolled by a Onco-Derm, giving me 2 types of cream. I got thae rash & itching no other symptom from erbitux. However strarting with my 7th radaion I started gettin Sore throat (bearable), a blister on the side of the tongue and some redness of tongue & mouth. The 8th to 11th radiation did not made mouth symptoms worse, also by this time I had had 3 chemos, which once a week. The 12th radiation made the mouth worse, my tongue got read like the color, on that day I also had my 4th chemo. Finally the 13th radiation this past Friday made my soar throat as bad or worse than strep throat. Even drinking water hurts, I called my Rad Onco's NP friday late PM and asked her if there is anything that help the pain. She called for Oxycodone 10 mg. rapid release. Since my stomach is very suseptible to narcotics and Anti Nausea meds., I called my pharmacist and asked him what I should do. He told me this is a very strong and addictive drug and that, so break the pill in half  and if you get upset stomach you have no choice but taking one Zofran 4 mg. I was lucky that I did not get upset stomach & did not have to take the zofram. I take 1 oxycone before bedtime and it take care of throat ache almost fully for 4 to 5 hrs. After that the pain comes back, not as stong for about 2 hurs and after this It is back to the full fledge pain. So for the past 2 nights I have been sleeping about 6 hrs per night. with a cool mist humifier. My mouth and thoat are so dry that they are all stuck together & have to drink water every 15 mins. This AM when I woke up I felt very miserable and was thinking I still have 20 sessions of radiation to go. The NP of my rad onco tells me it maybe the combind effect of radiation & Erbitux, but how come that after my 3rd Erbitux the only symptoms that I had, were skin problems & itching, which were fully under control by creams.  If anyone can shed some light on where I will end up, it will be greatly appreciated.

BTW: ingredients of magic mouth wash, which I do not have yet according to Mayo clinic website are:

Magic mouthwash usually contains at least three of these basic ingredients:

  • An antibiotic to kill bacteria around the sore
  • An antihistamine or local anesthetic to reduce pain and discomfort
  • An antifungal to reduce fungal growth
  • A corticosteroid to treat inflammation
  • An antacid that helps ensure the other ingredients adequately coat the inside of your mouth

  Thanks again,

 

   Mehrdad

Comments

  • MrsBD
    MrsBD Member Posts: 615 Member
    #2
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    Sore Throat

    Before the doctor gave me narcotics, every bite was like chewing and swallowing broken glass and sand. I had Stage 4a BOT with Erbitux and radiation for 8 weeks. The effects of radiation are cumulative, so the soreness gets worse the further into treatment you go. Before cancer, it was rare for me to take even a Tylenol, but I ended up on Hydrocodone liquid and Fentanyl patches. My doctors said when they are used properly for pain, the likelihood of addiction is very low. I had no problem stopping either one. Magic mouthwash did little to help, but there are people on here who get relief from it or another product called L glutamine. Each person's reaction to treatment is different, so just keep trying products until you find what works for you. It's extremely important to get enough fluid each day. It helps with the dry and sore throat. When I look back, it was a miserable treatment and recovery was slow. It has been two years now, I'm cancer free and feeling blessed. Hang in there! 

  • Kari2007
    Kari2007 Member Posts: 108
    #3
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    Hang in there

    I also had no problem weaning off the oxycodone, so don't let a fear of addiction deter you. If your body needs the relief, thankfully there is help available, and what you really need is to get proper fluid and nutrition intake so you can heal. A feeding tube was a lifesaver for me, but I know not everyone wants to go that route. You will get through this hell and in a few months you'll be amazed at how far you've come along. Best to you and keep fighting!

    Kari

  • lornal
    lornal Member Posts: 428
    edited October 2016 #4
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    meds

     

    Take what you need to keep ahead of the pain.  It will sometimes feel like the pain meds aren't making a dent - and you might need to go stronger.  I had quite a collection of meds when I wads done w/ chemo and rads - different types and different strengths.  Its when you start weaning yourself off the meds you find out just how well they worked.  I had to get off them before I could drive again - and go to work...

    Beware of the liquid meds.  Sometimes, they use alcohol to keep them in liquid form.  Those hurt.  Finally I got one med - wish I could remember what it was - that was liquid, but i mixed it with my own liquid when I took it.  I remember necatrine nectar and apple juice worked well - and I could get them done.

    As far as sleeping - I eventually got to the point I took sleeping pills.  Had never had them before - so I was nervous about taking them.  BUt I did, even during the time where I was sleeping all day - because I started to be awake all night.

    And, don't discount the need for anti-depressants.  This is a hard hard treatment.  I didn't start recovering until I started those meds.  Again, never had them before and was reluctant.  Finally, I started them, and they made a tremendous difference.

    Finally, if the pain in the mouth and throat is so bad - don't be afraid to ask for a week off from treatment.  When I had treatment for my 2007 tonsil cancer, I had two weeks on, one week off, two weeks on and one week off (Thanksgiving), and then two more weeks on.  Finished just before Christmas - but got through.  I don't think I could have done it without the breaks.  - For my 2nd cancer - surgery only (laryngectomy) - no chemo or radiation.

     

    Lorna 2007 & 2014

     

  • HelenBack
    HelenBack Member Posts: 87 Member
    edited October 2016 #5
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    Magic mouthwash-what about lidocaine?

    My husband's formula just had 3 ingredients: viscous lidocaine, milk of magnesia and some kind of antihistamine. He used it about 10 minutes before eating and it lasted long enough to eat, not sure how much longer. Other things that helped were papaya enzyme tablets to help thin the mucus, one mg Ativan to sleep through the night and a humidifier.

    Many people here had good luck with Xylimelts at bedtime, though my husband never tried it. Also look into Biotene products. I have also heard of people swishing coconut oil in the mouth for lubrication. 

    Since I'm listing things that helped, I'd like to say that if you are using opioid pain products please stay ahead of constipation, dealing with that on top of everything else is awful. Stay hydrated! Even though my husband was lucky to be able to swallow through treatment, he wasn't getting enough water so we scheduled hydration infusions at the clinic a couple times a week for the last two weeks of rads. I think it's more typical to get infusions just with chemo or in an emergency, but we did it to get ahead of any problems and I think it made a difference.

    Hang in there!

    Helen

  • Kenny-
    Kenny- Member Posts: 99 Member
    edited October 2016 #6
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    Options

    Merhad, 

    I had the same experience. The tongue maybe a bit worse, but mine was at the nasophranx and the entire throat was gone. You have a few options I can think of:

    1. Do you have a PEG? This may solve it. Although be aware this decision comes with a longer recovery period. 

    2. Plan to bear the pain

    Option #2 was what I went through. to be honest, everything happened so quick that Id idn't consider option #1. Similar to you, the worst times was it took me 30 minutes just to drink a glass of water. The most important is this: the pain is cumulative. It will get worse until the treatment is ended. I was aware of this and did everything I can to prevent it from getting worse. That includes shifting to a liquid diet early on (even though I can tolerate trying to eat solid food if I wanted to bear it). I have a high Vitamix type blender at home which made it easier. Also, a lot of Ensure to go with it. My typical meals were blended spinach, cucumbers, beans, canteloupe, added with carrot juice (with no residue) just to ensure I get a health dose of vegs. My protein was purely ensure and "pasteurized" eggs which were soft boil. Pasteurized was very important since the body can't tolerate any infection, and soft boil was the only way I could gulp down those eggs. I also had licodine, every 4 hours dose. It was a long and difficult journey to me. 

    When it came to the adjuvant chemo, I gave up becuse I didn't believe it would help (and I was in a lot of pain). I did two cycles. Looking back now, I'm glad the doctors talked me into doing it. The pain at the moment is horrible, but once it's all over - I always ask if I did everyhting I could to eliminate it all? I still suffer some of the side effects from over chemo (neuropathy, tinnitus) but it's bearable.   

    Hang in there! Don't give up, but also ask your doctor if they've options. they always do, but they want to try and keep you to the main plan until you're really desperate. 

    Good luck!

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