Quite desperate, seeking advice

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Hello everyone,

I hope you are all doing great!

My name is Mihaela, I am almost 33 years old and I am actually writing you from Romania. My dad was diagnosed with nasopharyngeal carcinoma with several lymph nodes affected.

He is having concurrent chemoradiation - 2 Cycles of Cisplatin + 35 sessions of IMRT. We are currently in week 5 of radiotherapy, however, his condition changed quite a lot after last Thursday when he had the second Cisplatin cycle.

He can still swallow, the biggest issue is with the bad/bitter taste in his mouth and with the "secretions" coming back to his mouth (he is spitting some sort of mucus). I have been reading a lot and I saw that actually acid reflux is one of the common side effects when having radiotherapy for head and neck.

Did anyone had similar symptoms/issues? How did you cope with these challenges?

Thank you in advance for all your help!

Mihaela

  • Hello Mihaela and welcome to this group.  I can't actually help with answering your question as I only had surgery, but I just wanted you to know that people do pop in during the day, most have had radiotherapy and many will have had chemo as well.  They should be able to give you some answers and advice.

    Peter
    See my profile for more details of my convoluted journey
  • Hi mihaela and welcome. 
    We do get reflux. Can you ask for omeprazole? 
    The thick mucous is down to the radiotherapy though and will eventually go in a few weeks. Sipping lots of water helps. A nebuliser might move it too or failing that steaming over hot water can be tried. That’s what I did. Keeping a humidifier by the bed as night can ease symptoms. He’ll probably just have to live with it for a while and spit it out. It does go. 
    Best wishes 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Mihaela - Like your dad, I got the nasty taste and the mucous end of wk5 and it does continue for a while.

    I'm currently half way through wk2 recovery and the mucous is the most annoying side effect for me as it makes me gag and feel nauseous even thinking about swallowing. I use a nebuliser (quite useful) and have sips of water. The main thing unfortunately is I am now a champion at spitting - it's disgusting, but the only way I can clear it, as trying to swallow the mucous would make me feel sick. I use lots of tissues and am just hoping it will get better soon.

    So, what your dad is experiencing now does sound normal. I hated way the cisplatin (x2) made me feel/ taste and the nausea & mucous have been the worst side effects of treatment.

    Hope this helps and ask any questions here, someone will have an answer!

    Helen x

  • Hi Michaela what your dads feeling is normal our treatment is brutal and where it is is a sensitive place at the best of times. I did her acid reflux after treatment I had never had is previously. I was prescribed omaprozole pots classes as a protein pump inhibitor maybe ask you doctor. The taste is also a side effect along  with the thick  mucus it does go as quickly as it arrives. Yet to her him to drink 2-3 litres is water a day ri help thin the mucus down. 
    hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Mihaela, and welcome . I had radiotherapy and chemotherapy with cisplatin earlier this year for T4 tonsil carcinoma and developed very thick mucous quite early in treatment. I would always carry loads of tissues around with me, and at night put a towel on my pillow as sometimes it would just pour out of my mouth. I also ( and still do) take a medicine called carbocisteine which is supposed to thin the mucous,and help control it.  I also found a nebuliser helpful and at one point used a suction tube.
    This cleared up several weeks after treatment finished. It is slightly different for every individual though,and I didn’t have much reflux at all. If your father does suffer with reflux, there is a pill called omeprazole which helps to protect the stomach lining.  
    it will clear up eventually, your father will just need a few ways to help him get through the discomfort.

    With very best wishes,

    bennym

  • Thank you so much for taking the time to reply to my message, Peter!

  • Hi! Thank you so much for your reply! It is comforting to hear that there is some light at the end of the tunnel. Wish you all the best! Mihaela

  • Hi, Hazel! Thank you very much for taking the time to reply to my message! I have also checked your blog and I have definitely appreciated all the positive vibes, even though you were going through some difficult times. Wish you all the best! Mihaela

  • Hi, Helen! Thank you so much for taking the time to reply to my message! I wish you a speedy recovery and I hope everything will be back to normal asap. Wish you all the best!

    Mihaela

  • Hi, Dani! Thank you for taking the time to reply to my message and for all your advices! We did ask for Omeprazole and it started making a difference. We have also purchased a humidifier and using it during the night. I hope everything is ok with you and that you enjoying life to the fullest. Wish you all the best!

    Mihaela