Head and neck radiation side effects

Hi my name is Justin and I am 30 years old. I was diagnosed with stage 1 nasopharyngeal carcinoma in August 2015. I completed 35 treatments of radiation therapy and 3 cisplatum chemotherapy treatments. My last day of these treatments was October 22nd. 

 

I am looking for relief and information and I hope that somebody can help me. I am truly desperate for some support with my side effects. I have read so much information on the Internet and talked to my team of doctors, but I really can't find any real relief from my symptoms. I don't have the best doctors, and they say that there is nothing j can do about my side effects. 

 

I won't bore you with the pain I've already gone through, but if you want to know more, I'll be more than happy to tell you my story. 

 

My major problems my salivary glands and my sore throat. My salivary grands aren't producing enough saliva and my throat and mouth are covered in thick mucus all of the time. Due to my side effects, I wake up every hour and choke, which is extremely painful due to my sore throat. 

 

I'm taking hydromorphone and saligen and omaperazal as far as medications. I've had a peg tube since my fourth week of treatment. I've read and practiced many of the remedies, tried magic mouthwash and carafate solution. Nothing seems to work successfully, which is why I say that I am desperate for relief and information. 

 

Here's are a list of questions I would like to ask somebody who has done my treatment in the past:

How long did it take until the sore throat started to subside after treatment was over?

How long until the salivary glands started to get better after ending treatment?

How long until eating was starting to get better?

Is there anything you would truly recommend to relieve the pain until side effects start to get better?

 

Please help me with any information. Even if you don't feel like it is important enough, I don't mind any extra information. I'm at the point where my quality of life has been diminished. I've had to quit my job, I'm in pain every single day and I really hate living right now. The mornings and night are the worse because that's when the side effects are at the pinnacle. I wake up, gag and choke, try to feed myself through the tube and throw up. That has been my life since week 5 of treatment. It's extremely depressing to think that there is nothing I can do to help myself. I have been taking care of myself since I've been 18 years old and always figures things out for myself. To try so many things and do so much research with no help is so very hard on me. Thanks for your time. 

 

 

Justin

Comments

  • socalgal63
    socalgal63 Member Posts: 5
    Hi Justin
    We appear to be at

    Hi Justin

    We appear to be at similar places right now with the same questions. I have gotten some relief from the choking on excess mucous. I had to be admitted to the hospital as the mucous was interferring with breathing. I was suctioned which helped right away but also I was put on steriods to reduce swelling in salivary glands. I also take Mucinex to thin the secretions. Ask your Dr. about the steroids. I would say the improvement is about 60% which is a great releif while dealing with the pain and other symptoms. I would have probably not gotten the steriods if not for ER doc. It really seems you must ask and research for your help as I too felt my cancer doctors were not offering much help. Also it sounds like you are bolus feeding through your tube. I have a pump that puts in the nutrition over a 18 hour period, ask your doctor if they can give you that if you do not have. It is a pain to be attached to bag but the slow feed is tolerable and I do not vomit often.

  • MrsBD
    MrsBD Member Posts: 615
    Side Effects

    Oh, Justin, I just want to give you a hug because most of us know exactly what you are going through, and it is probably the worst phase of the whole treatment. The mucus is produced when your tissues are healing. My doctors suggested Mucinex, which really helped. I also used a vaporizer in the room at night. Drinking the recommended amount of water does help ease the sore throat, too. Once the Mucinex kicks in, you won't have to cough so hard to get rid of the mucus which will also help your throat. My sore throat was at it's worst for about a month after treatment,  but others have had it clear up sooner. You could ask for a stronger narcotic like Fentanyl patches.  As far as the salivary glands,  I had acupuncture to preserve the function, which has seemed to have worked pretty well. Others on this site will have suggestions to relieve dry mouth symptoms. Very, very slowly is how healing progresses. It may take a month or more before you feel like eating a normal diet again. Some items might not appeal to you and others will give you trouble swallowing. It's slow, but it does get better. It's been a year since my treatment ended,  and I'm just about back to my old self. I was a teacher, had to quit, and am just doing one class now, but my energy level is improving. Be patient. It will get better. You'll be in my prayers. 

  • yensid683
    yensid683 Member Posts: 349
    Time

    is what it is really about.

    It will take time to heal from the very real ordeal that is cancer treatments. 

    I was diagnosed in March of 2012 with base of tongue cancer, it was staged at IV-a due to the size of the original tumor and the involvment of lymph  nodes. 

    Treatment was in three phases

      Phase one was induction chemo - and it lived up to all of its stereotypes.

      Phase two was concurrent chemo and radiation, 33 rads with weekly Erbitux - fortunately the Erbitux did not have the side effects that induction had.

      Phase three was surgery to remove any remaining issues.

    I had my last radiation treatement on July 5,2012 and was told by my radiation oncologist that I would continue to 'cook' for two weeks and then I would gradually start to feel better.  He was almost spot on with the 'two week' part, I woke up one morning and found that my throat was not quite so sore, and that the mucus had started to diminish.  Things gradually improved over the next several months.

    I was on liquid hydrocodone for most of it and also had the 'magic mouthwash' though I found its feel to be somewhat disgusting so used it only when I absolutely had to.  When it comes to pain relief, contact your doctor and get his/her recommendation, as other meds are available to help.  I was able to tolerate the discomfort and was able to discontinue prescription meds in late August.  It was not the most pleasant of times but I got through it just fine - the bonus was that I was able to drive myself once again. 

    My throat was quite sore for some three months after radiation treatments ended, though I was able to switch to over the counter meds by September and discontinue them just a few weeks later.  Pain limited what I was able to eat and swallow, very soft and wet foods, salty worked better than anything else at this point, and due to swelling in the throat, I couldn't swallow too much at any one time.

    I was quite suprised to find that just a couple of weeks after I returned to work (Sept 4) that I was able to swallow somewhat larger bolus of food without real issues so I decided to try to eat a $1 fast food burger.  It took some time but I was able to do it, the bigger issue was saliva and achieving a balance of water and food.  too little and it was too hard to swallow, too much and the food was disgusting!

    Eating slowing got better and I also found that as I ate more 'real' food rather than depend on my PEG tube, I felt better and better.  I was back to 'normal' in about 9 months.  I say 'normal' as it is a new normal.  I'm different when it comes to saliva and such than I was, I have to have sips of water available when I eat most foods save things like fresh fruits and vegetables and pasta with sauce.  I can do dry foods like popcorn but it is only when I have some water available.  It takes some time to perfect the delicate balance of food/water sips.

    Still, the point I'm trying to make is that it takes time.  This is not like healing from stitches or even the 6-8 weeks of a broken bone.  This will be some months.  Some people progress quickly, others not so much, I was somewhere in the middle.

    I'm now some 3 years and 3 months out of treatment, my check ups continue to be clear, I have no issues with any activities, I can eat just about anything except sour candies which is directly related to the lower saliva issue but I'm doing just fine and I feel you will too, you just have to let the healing happen.

     

    Hang in there, things will get better but accept that they process is sllooooowwwwwwwwwwww.....

     

    Peter

     

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome and sorry you need to be here. Your treatment is really not over. You are wat is called still cooking and will be for up to 8 more weeks. You are on just about the strongest pain meds there is. You were thankfully only stage I which is the best other than not having it at all.  Your recovery will take time, lots of time. It is not measured in days and weeks, but in months. Everyone is different, and you can see that in the painkillers you are taking would knock most on there butt and not feel anything, even being hit with a hammer. You seem to have a very low threshold for pain. This will also transfer to the other problems as well. If, the slave does come back it can be many months, you might some back sooner.

    As for the thick mucus you have to drink water to thin it. Mucinex or just Guaifenesin which is the generic name will not get rid of mucus. It is to help you cough it up and will thin it to a point. Lets say you weigh 180 lbs that means you need to take in 90 oz of liguid, meaning water. Soda and coffee as well as all dary will increase you mucus. The average person makes 1 1/2 liters of mucus daily. If you have to fight foren particals you will make more. 

    You have to remind yourself you are fighting cancer to stay alive, and it will take time. For now just be thankful you made it and take one day at a time. It could have been so much worse. I never had to have chemo or radiation, just surgery. They did a double neck dissection and took 86 lymph glands and my larynx as well. I was cut from ear to ear and will always be numb on the left sid of my lower face. But I beat cancer. I will be on muscle relaxers and pain killer the rest of my life, but I am alive and only five thought I would be, and the five counts me, my doctor, wife and 2 out of 250 at work. You need to count your blessings as well. You beat this and will get much better.

    Bill

    You will sowley get more slava and the pain will subside and will in time get back to very much normal.

  • rcaulder
    rcaulder Member Posts: 70
    Living

    But you're living Justin. This is good, it will get better.  I'm 3.5 months out of treatment and I still have a mild sore throat. Salivary recovery is different for everyone .  Expect it to be awhile. My Dr perscribed Pilocarpine for it but I'm not sure it helps. I use biotene products and hang onto HOPE this will just be a memory someday. Eating is still tough . Takes a lot of water for 1 chicken nugget. You may want to talk with your Dr about a short course of steriods for the mucus. Medro dose pack. You may want to try Ginger ale or Root Beer. As fast as mucus came on for me it also went away fast. You may want to ask your dentist for a prescription strengh flouride toothpaste. Ask for a surgical soft tooth brush. Brush the top of your tongue.  Check the recipe for baking soda and salt mouthwash on the super thread on this site. Maintaing the proper mouth PH at this point is important. I can say this, yes its hard, but it will get better.

  • Barbaraek
    Barbaraek Member Posts: 626
    Hi Justin!

    I'm sorry we didn't "meet" on the discussion board earlier so we could cheer you on as you did your treatment..but hey, congrats! You finished and that is something to celebrate!

    You will hear from others that even when you are done, you continue to "cook" a while. The docs told my husband 4 weeks at least. In truth, it was closer to 8 weeks - but some of that had to do with his reaction to adjuvant chemo and something they call "radiation recall".

    It does take time, and that's so disappointing to hear right after you finish treatment. As far as soreness goes, my husband's throat is still sore and he still takes pain meds, though we are beginning to titrate off of them. If your pain meds aren't helping...talk to your doctor about changing them...there are lots of options, one may work better for you than what you are currently taking now. At one point in time my husband was up to a 150 mcg fentanyl patch and it wasn't working! They switched to a different med and it helped reduce the pain enough to start swallowing again.

    As far as saliva goes...that also seems to take a long time to come back. As yet...nothing is working for my husband, but it's still early. I have read that it can take up to a year to come back. In the meantime maybe some of the over the counter dry mouth remedies will help Biotene, Therabreath. For mouth sores we used something called GelClair. We also found L-Glutamine powder dissolved in water helpful. Now he uses 1-2 tablespoons of flavored aloe juice (not gel) mixed in with 10-12 oz. of water to be soothing. Your dentist might have some suggestions too.

    We had a super hard time with nausea from the mucus that drained down into the esophagus during sleeping and naps. He would start to gag and that would just set the tone for the whole day. Zofran helped with the nausea before tube feeds. Also, try putting a humidifier in the room, sleep more upright in a recliner, use Mucinex to thin the secretions and swish and spit that saltwater baking soda solution as often as you can.

    I hope things trend better for you soon Justin. Keep us posted.

    Barbara

  • Kent Cass
    Kent Cass Member Posts: 1,898