6 weeks post treatment

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  1. Just dropping wee note here to let you know how things are going. This is week 6 post treatment for my husband who has hpv positive tumour at base of his tongue. He is doing well and managing really well with eating and drinking. Pain is minimal and tiredness much improved. He had 30 fractions of radiotherapy and 2 rounds of cisplatin. He has had hearingbloss on his right side and we wonder if anyone else has had this problem. He does have a dry mouth which he has been coping with but last few days he has developed a troublesome dry cough. He does use his nebuliser but wonder if this cough is something others have experienced. Obviously we are still in early stages of recovery but wanted people to know there is light at end of tunnel. We are still in limbo waiting  gor ct scan to see how effective treatment has been and still probably overthinking every niggle and putting 2 and 2 together and making 5. Would just like we bit reassurance from fellow forum users that sll this is normal. Thanks agsin for ongoing support.
  • Well done to your husband on getting this far Slight smile

    I had exactly the same rounds of treatment for HPV tumour (tonsil and neck) and experienced some hearing loss after both sessions of the chemo. Took 2-3 weeks each time for it to return to normal so hopefully won't be any longer and your husband will be the same.

    Great news he's eating well after just 6 weeks too. I'm into week 14 post-treatment now - scan results due a week today - and still have problems eating dry stuff like bread, crisps etc and things like curry are still very much a no-no. However, things improving by the week.

    Dry mouth still a problem, although fortunately those cursed secretions are a thing of the past.

    The overthinking every niggle is a perfectly natural response, and probably something we will all have to live with for the rest of our lives. I'm trying some Mindfulness techniques just now to minimize the impact of these thoughts and it's proving really useful, so maybe something worth trying.

    Best wishes to you and your husband throughout his recovery.

  • Thank you for your reply,helpful knowing others in same position. Reassuring that given time things should improve. He is very lucky managing to eat as well as he is at this early stage. He has peg tube which has been a godsend in the early weeks despite fact he wasn't keen to have it. Good luck for next week and scan results. Nov for us which seems long way off but we ll get there x

  • Hi, congratulations.. your husband is over the worst of it.. but it's still a rocky road as the healing will take a long time.. cisplatin can and often does wreak havoc with your hearing.. for me, tinnitus is a problem.. dry mouth and dry throat is going to be a problem for a long while, and I have to keep clearing my throat.. overthinking every niggle is natural, but it's early days, he is still healing and it's going to take a while... but, if you are overly concerned about something or if something just doesn't feel right, contact your CNS, and get some peace of mind.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Thank you  for reply x

  • Sounds like he is doing really well with recovery.  Dry mouth is now my biggest problem.  I use Bioitne gel at night and normally have a warm tea or milky coffee at hand whilst eating as that helps replace the missing saliva.

    Fatigue can continue for many months post treatment.  Listen to the body and if a rest is in order mid day then have a nap.  Better to keep topping up the battery rather than letting it become totally exhausted and spending a long while recharging.

    Hope the scans show all is good.

    Peter
    See my profile for more details of my convoluted journey
    • Thank you. Things certainly better than few weeks ago so hoping in right direction. Roll on Nov for hopefully some peace of mind. 
  • Hiwell fine in completing  treatment. What your hubby did going through is all par for the course. Over time your brain  adjusts to our new normal. The very mouth is the one that tends to stay with us. I never thought I would be able to go out without the water bottle but six years on I can do never thought I would get to that stage but your husband at six weeks it’s still very very early days. Dry mouth at night I use 1/2 a xyimelts and get a full nights sleep. Maybe up the  nebuliser I was using 5-6 times a night at his stage. 
    a small sip of something warm can help food go down then following by another sip used to help

    hugs 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

  • Thanks Hazel your advice is always invaluable. We fo appreciate he is doing do well for this stage,far better than I ever expected. The road is a long one but staying positive is going to be the key. Thanks again for the support

  • Hi,

    Great to hear your husband is doing well in his recovery. 

    I'm in week 5 post treatment and identify with everything you've written here. I'm doing pretty well too, but, like you, I don't think I'll be able to stop worrying until the post treatment scan is done and I know where I stand. I have a constant dry mouth and blocked nose (sinonasal tumour), but can keep on top of it mostly without issues. I don't have pain when I eat, but I have no appetite, in fact the thought of food often makes me gag, which does worry me a bit. Does your husband have an appetite? I'm still relying on Ensure drinks to keep up my calorie intake. Anyway, your post has reassured me that my recovery is on track, so thank you, and all my best wishes to you both.

  • So lovely to hear how well your husband is doing. I also suffered from hearing loss on my left ear after my radiotherapy treatment. It was as if I was under water all the time . My ENT offered me hearing aid or a grommet , I chose the grommet as it would hopefully treat it as opposed to just deal with the symptoms. It did help a lot. Really happy to have made that decision. Might need to have another one as it is on its way out. I still have a dry mouth but as time goes by your husband will learn to deal with it in various ways that works for him,  and it will get better. Personally I use coconut oil before going to bed at night, it keeps my mouth moisturised during the night. I also have a spray of water and glycerin during the day if I am out. 

    Sending you both loads of love and positive vibes. 

    Fab1