Update from Marc in Washington DC 4 1/2 weeks after last radiation treatment for Stage 4 SCC in Tons

Marc in Washington DC
Marc in Washington DC Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
Greetings and Happy Thanksgiving to all. I had my 34th and last radiation treatment on October 22, and today is November 22. My treatment began June-August with four treatments of Cisplatin, Taxitir and (for 72 hours via infusion pump) 5FU, 3 weeks apart, over 12 weeks, followed by 34 radiation treatments between early September and October 22. For the first 4 weeks of radiation I had Erbitux once a week by infusion, but the doctor stopped after 4 treatments of Erbitux instead of the planned 7. The tumor in my tonsil disappeared completely very early in the chemo phase, but of course I had all the rest of the treatments regardless. I had a very hard time with the radiation. The radiation oncologist - Dr. Daniel Clarke of Silver Spring, MD - who was wonderful, had to stop for a week in the middle because I had such a severe reaction in my mouth and throat. Nothing helped the pain, not Oxycontin, Morphine or Fentanyl patches. In fact, a few days ago, still in considerable pain in the mouth and throat, I stopped the narcotics because they are so addictive and they weren't helping. I am having the predicted mucus problem. It covers my mouth and throat. My top and bottom teeth stick together and I find brushing doesn't clean it unless I add baking soda to the toothpaste, and that helps, but the mucus is constant. I avoided the feeding tube altogether and have managed to stay alive and hydrated with Ensure, which even after a month I still cannot taste, and ice tea. Even plain water burns my mouth. My newest problem since about 4 days ago is dizziness. When I stand up from a sitting position I get dizzy and almost black out. Could it be one of the meds I'm still taking? I'm taking Mucinex, an antibiotic, an antiviral, an antifungal (I've had thrush twice in the past month), and Ibuprofin. When will I feel better? Does anyone care to share any helpful advice? Warm wishes to all and many thanks. Marc in Washington DC

Comments

  • JUDYV5
    JUDYV5 Member Posts: 392
    Dehydration
    I would find out if you are deyhdrated. That could cause you to be dizzy.
  • Greend
    Greend Member Posts: 678
    Mouth rinse
    I found a mixture of hydroge peroxide and water is the only thing that ever gets the mucus and crap out of my mouth. Now they sell "pre rinse (brushing)" already mixed so I use that. Dizzy - agree it is probably dehydration however you may want to get your sugar levels checked as well.
  • JUDYV5 said:

    Dehydration
    I would find out if you are deyhdrated. That could cause you to be dizzy.

    Thanks for the reply
    Thanks for the reply
  • Greend said:

    Mouth rinse
    I found a mixture of hydroge peroxide and water is the only thing that ever gets the mucus and crap out of my mouth. Now they sell "pre rinse (brushing)" already mixed so I use that. Dizzy - agree it is probably dehydration however you may want to get your sugar levels checked as well.

    Thanks for the reply
    Thanks!
  • Greend
    Greend Member Posts: 678

    Thanks for the reply
    Thanks!

    Feel better
    I smiled when I read "when will I feel better". It will be a while after treatments because they are still messing with your body however! it will happen so just be patient. As stated before, you are about to meet a new "Normal". Sipping water all night, mouth sticking shut, coughing up mucus and having a hard time eating...but it does get better and you learn to adapt to the new normal. Give yourself time.

    Side note: I see the cruise line in your picture, about to take our 5th New Years Cruise out of New Orleans...you can look forward to doing that again.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Marc
    I have a lot of dizziness and pain all the time, was on oxycontin for many months but stopped it cold turkey 15 days ago, wrong thing to do with such a hard drug but I am doing OK now. Most of the dizziness and pain is all due from the radiation treatment I had to the head and neck 5 years ago. I blacked out and fell about two weeks ago so be carful and try getting up slowly. I am finding out that a lot of the problems is from a condition called Hypopituitarism look it up on the internet and see if it fits you.

    Take care and welcome to our family here on CSN
  • Scambuster
    Scambuster Member Posts: 973
    L-Glutamine
    Marc, Sorry to hear you are going througth the rough patch but it will pass but it is a nasty period. You will have to deal with the mucus issue and it will pass. As for the mouth pain (even when drinking waterr) you should get some L-Glutamine powder and start taking 10-20g a day. Buy a big tub of it (2lb).

    Just mix a heaped teaspoon in a large glass water and sip all day. Actually swish n swallow. It will neutralize the burning you are getting and will get as you try new foods, so it works as a topical pain releiver. If it's in the water it won't burn so it also allows you to drink more water = better hydration. It will assist the mucoso to heal (your mouth & throat tissue). All around a good thing to get.

    On your dizzy spells, if you feel it coming on, get down low and quickly i.e. sit, crouch or get onto your knees as this will reduce any injury from falls as the fall cause more damage than the dizzy spells. It it usually low blood pressure and other issues messed up in yr body from radiation. It should pass but keep yr Doctors aware of what is going on. Check Hondos reference.

    On the pain, I went cold turkey off Morphine and Vicodin and was given Lyrica which worked a treat and helped me sleep but it doesn't work for everyone. Ask yr Doctor.

    Keep on fighting Marc, you have done very well considering no PEG. Get the good food in, and maybe a broader nutritional shake(s), vital greens and other essential elements will speed up the recovery. I started on rice gruel at your stage, and built up slowly from there. You will look back on these darker days before too long.

    As we say, measure improvements by the week, not the day. You will be fine.

    Scam