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Looking for info on radiation side effects to head and neck and ways to mitigate

Forums General Melanoma Community Looking for info on radiation side effects to head and neck and ways to mitigate

  • Post
    sing123
    Participant

      Sorry to post so much! Promise to pay it forward!  OK, am adjusting to idea of permanent hair loss and moving on to other side effects. Radiation will be photon beam, delivered through 30 sessions at a rate of 30 gy from top of head and down sides to lymph nodes on both sides of neck. 

      Have been reading about potential:

      Stiffness in neck/reduced range of motion

      Significant tooth decay

      Thyroid issues

      Loss of salivary function and dry mouth

      Scarring? 

      Change to neck anatomy? 

      I know there are some that are expected to be short term, such as fatigue, difficulty swallowing and resulting weight loss, and loss of taste, but what about longer term or permanent effects? 

      Thanks for feedback.

       

       

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    • Replies
        Linny
        Participant

          I know somone who's going through radiation as we speak for oral cancer in the jaw. He just passed the halfway point in his treatment.

          Right now one side of his face appears as if it's sunburned. The skin on that side of his cheeks and neck is very delicate and sensitive at this point in his treatment. He did mention he needs to be careful to not touch it or even allow a shirt collar to brush up against it, as that can cause injury to the skin.

          One of his side effects is the loss of salivary function. His saliva is thicker than usual right now and it causes some minor issues for him but he's coping with that well. He directs the choir for the church that I attend and is managing well at that job and is even singing along with them as he conducts like he's always done. 

          What he's doing to manage any discomfort inside his mouth is drinking a concoction of baking soda and water every 30 minutes when his discomfort is at its worst. This was at the recommendation of his doctor for pain control. As for how it tastes? He says whatever taste there is doesn't bother him because he has no sense of taste at the moment.

          The only permanent effect I've heard him mention is the potential loss of some of this taste sensation. So, it's up in the air as to how much of it he'll regain. But any little bit will be good.

          Wish I had more info to share with you on any permanent side effects but I hope what little I was able to offer was of some help to you.

           

            lmhl
            Participant

              My husband had radiation on his neck following a CLND for Melanoma Stage III. He had side effects of sunburned appearance as well. The worse symptoms however were dry mouth, difficulty swallowing and altered taste. It was so bad that he ended up losing 40lbs in 2-3 months, which led to him getting a G-tube for feeding.   In hindsight, we really wish that he didn't have radiation therapy.  Not sure if he was just unlucky and non responsive to radiation, but I haven't seen much benefit of radiation therapy in the scientific evidence either. If we were in the position again of having to decide on radiation or not-we would say no.  But that is just our experience. Ask lots of questions.  I wish you all the best. 

              marta010
              Participant

                Wow…your husband's ecperience sounds so mucn like my husband that it's spooky.  He also had radiation to a lymph node in his neck and developed an open lesion in his mouth/jaw.  This led to trismus which was so bad that he could barely open his mouth to eat or drink and needed a G tube.  Thankfully, he was able to resume eating by mouth and the G tube was removed after about 8 months – still has exposed bone in his jaw which will never heal.  He also has a completely blocked carotid artery on that side. I really doubt that the radiation provided much benefit and we have so many regrets about doing it.  It led to so many complications.  

                Ann

              kst
              Participant

                I had 5 sessions of HD IMRT radiation for a total of 30 gy to the left side of my jaw, ear and neck area.  Precautions were taken with wedges and masks to avoid damaging my tongue and taste.  I have some dry mouth but always keep a solution of baking soda and salt available to rinse my mouth.  Teeth care after requires flouride trays daily and regular dentist every 3 months.  Meet with dentist at hospital every 6 months also.  All dental work must be performed by specialist now.

                I chose to do radiation to avoid a recurrence around my face area.  Any physical changes have been much less than my previous 2 surgeries.  All hair loss returned within six months.  Between radiation and nivolumab I am over 1 year NED.   

                swalters1038
                Participant

                  I had 5 doses over 10 days to my left neck/head area after a parotidectomy and modified left neck dissection.  I lost all taste for about 2 months afterword, worst sore throat imaginable for about 10-14 days, and lost the vast majority of my facial hair.  LIke another poster I lost about 35 lbs afterwords do to the sore throat and the loss of taste.  My taste has come back and some of my facial hair has as well.  I todl the radiaiton oncologist at my follow up that he really undersold how bad the sore throat was going to be.  I'm kind of surprised that they are doing that many doses, as the two options I was given were either 5 over 10 days or 7 over 14 days.  Might be beneficial to get a second opinion?

                  Cheers

                  Steven

                  lkb
                  Participant

                    Cindy, I've had one MD and one NP (both in melanoma department) tell me they don't often recommend radiation for melanoma, though there are some exceptions. I would definitely get a second opinion.

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