Continuing Nausea after Radiotherapy

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Continuing Nausea after Radiotherapy

No. of entries: 15 | Posted on 15 Feb 2013 01:42

Continuing Nausea after Radiotherapy

  • I am 2.5 months post radiation treatment for naso-pharynx cancer (behind nose, top of throat). I have recovered pretty well from some of the side effects, however, I still have the nausea especially early evening and night. Because I cannot afford to lose weight I am battling to eat as every mouthful makes me feel sick.

    I have been on & off the prescribed sickness medication as I don't believe it does any good.

    Has anyone any ideas on how to control nausea and also how to build an appetite? NB I have tried peppermint tea.

    Jayne

  • Hello Jayne.   I am glad that you have got through your treatment for nasopharangeal cancer, although the radiotherapy can cause some very distressing side effects. I found that even two and a half months after the RT it was still early days as although the treatment had finished, the radiation carried on having an effect on me. However, I didn't suffer from continuing sickness - it was the pain that hit the hardest so afraid that I can't really help with that one other than suggest you try different anti-sickness meds ?

    I lost too much weight due to the RT and had to have a nasogastric tube for a while afterwards, but what I found beneficial was the Ensure Plus drinks .... they are high in both calories and nutrition. So maybe they would work for you if food is difficult ? I would have a word with your dietitian and see what she has to say .... there are other supplements available to help add those calories too. Take care and I hope you find some relief from the sickness very soon.

    Joycee x

  • Joycee - Many thanks for this - all I could sustain through the RT was Strawberry Fresubin drinks and the thought of having another one of these makes me nauseous. I have a consultant meeting on 27th Feb and am terrified she will want to intervene with a tube, peg etc as I have lost half a stone since 6th Jan - making total weight loss 1.5 stones.

    Will have to bump the calories up I think.

    Jayne

  • Hi Jayne,Im delighted u are recovering well. I imagine its the chemo and radio still in your system. I am no pro and I am sure you will have tried eating little and often but I know ginger helped my hubby who is 4 months post treatment for naso-pharynx (no longer feeling nausea). I think building appetite takes time (frustrating, I know). I know we were both eager for Hubby to put on weight but realised that time allows all that to happen. He lost 4 and half stone so we have some way to go. I wld go down homeopathic route - my hubby wld rubbish the idea completely. Try carbs for nausea. Will be trial and error I think unless a Doc' can give u something more difinitive. Good luck and again I am delighted you are on the other side of the treatment.

     

    Best wishes, Mel

  • Hi Jayne,

    My partner had the same cancer as  you, and you're the first in this community whom I have come across with precisely the same condition.  We were told it is quite rare, and I'd be interested to hear of your experiences and progress.  My partner is a head-in-sand kind of a person but I find it reassuring to read the experiences of other people who have had similar treatments.   First (or second), the appetite.  He is 8 months post-radiotherapy and is only now beginning to feel hungry now and again, or have an appetite if you wish.  So, don't worry about that.  The thing to remember is to try to eat, even though you may not feel like it.  We were told calories help in the healing process.  It has been a gradual progression from ensure/fortisip, to custard, to soup, to macaroni cheese and every form of pasta with lots of sauce, but now he can eat most things, apart from meat/fish/chicken (unless finely cut and covered in something wet), or spices, and he can't take any form of booze - it burns - apart from a rare sip of Baileys.  So, eat.  Appetite will come eventually.  

    He suffered with extreme nausea and fatigue in the post-radiation phase.  We found that we had been inadvertently overdosing on the painkillers, taking them by the clock rather than as required.  Also - and the only time we felt let down by the hosptal - after doing some internet research on more reputable sites - I learned that the anti-emetics could conflict with the painkillers.  Once the dose was regulated and the anti-emetic changed (to Ondemet), the sickness subsided.  However, part of the nausea was also attributed to withdrawal (coming down) from the painkillers (fentanyl and oromorph as morphine wasn't strong enough), so keep that in mind.  The thing - that you never believe - is that it will eventually subside.  That is no comfort when you are living through it however. Other side-effects - apart from weight and hair loss (from the radio) were becoming withdrawn (as a hermit), and suicidal thoughts, quite totally out of character.  Severe, severe constipation.  If you have had any of this, but never admitted to it, don't worry.  You were not alone.  

    So, in sum, the nausea could be a combination of your meds, the doseage of your meds, the radiotherapy side effects, the drugs leaving your system, total onslaught your body endured.  It will pass, but see if your clinic can look at the meds for "contraindications" and maybe change them. The appetite, it will come, but don't stress about that - just eat, even if you don't feel like it.  Partner has had mouth ulcers (still flare up), still has mucosities (green slime from the nose), sore mouth, sore throat, fatigue, but is slowly getting stronger.   I am happy to "chat" anytime.    

  • Hi - It is reassuring to know of others' struggles and perhaps I am expecting too much after only 2.5 month post RT.

    I believe "lucky " is not the correct word but I have not had any pain during or after treatment. Early on my Oncologist inundated me with painkillers, co-codomol, solpadene, oromorph etc I took as advised and all they did was make me feel even more sick - so I stopped taking them unless needed.

    After treatment I was given a low dose fentanyl patch and some anti sickness tablets. At my consultants appointment in January she told me to come off Fentanyl (never had any pain) and continue with the sickness tablets.

    I get up in a morning and have porridge, I manage to have some soup at lunchtime then tea-time the sickness starts - I think I am causing it myself by leaving too big a gap between lunch and tea but I am so tired then I cannot be bothered to make anything substantial.

    My mouth has a life and mind of its own - it is always sore early evening.

    I am so glad your partner is on the road to recovery - be it a long one I expect.

    I too am available to chat most afternoons.

    Jayne

  • Hello again Jayne.   Some excellent replies for you there ! Just a tip about eating, I found that if ever I felt like having porridge for my tea then so be it .... it doesn't really matter what you have so long as it goes down reasonably well. If you feel the time gap between lunch and tea causes the problem then either ' graze ' throughout the day or bring your teatime forward.

    I found that eating a really good breakfast was best and then it wasn't too crucial if my appetite waned throughout the day when you start to feel tired ( back to the Ensures sometimes ! )

    Yes, my mouth can still be sore .... or rather my tongue where it got hit badly by the RT, but I find that a warm, mild salt / bicarbonate of soda rinse can help soothe it. Anything is worth a try !

    Joycee x

  • Hi Jayne, I had nasopharyngeal carcinoma too and had the 35 x RT plus 2 x cisplatin. Finished 14 months ago. I had terrible problems with sickness and nausea, especially when I got the mucus towards the end if treatment and a bit afterwards - that made me gag! I was always trying not to be sick. I lost 2 1/2 stone. In the end it got so bad I was hospitalised (twice actually - once during treatment - I knew it was the right thing to do when I drank a cappuccino Fresubin then hurled all over the hospital floor!) then again a couple if months afterwards (when it got to the point that everything I ate or drank came back up). For me the drugs did the trick. They switched them (as there are several anti-emetics) and hit on a combination that worked. So I took them for a couple of weeks then weaned myself off them. Different things work for different people though - you have to find what will work for you. I have to say though I don't think some of the things we eat and drink help! I know exactly what you mean with the Fresubin - it's totally nauseating. I would force it down and try and keep it there! Just don't go anywhere near the neutral one. That's the worst of the lot! Tastes of plastic. I used to eat a lot of cream if mushroom soup (it had to be the Batchelors one) - but after a month or so I went off it as that made me feel sick. Eggs made me feel sick at first but now they're ok - eventually the aversion wore off. So I guess my advice would be to try and vary your diet so you're not going to go off something. If you can bear the cost whole milk (or better still jersey milk) might be a less nauseating alternative to Fresubin. I too was too tired to do tea, especially after I'd put my (then one year old) daughter to bed so for a couple if months I survived on ready meals - not ideal I know but it did the trick with getting the calories in. Tesco do a macaroni cheese that has 700 odd calories I seem to remember - the cheese sauce based ones went down really well. I also found weetabix (drenched in whole milk and left to become mushy) a successful and low-hassle breakfast. In fact I still have that now, easy to shovel down before work! I also found super noodles good (and easy) though not v calorie laiden sadly. I put a stone and a half on after about 4 months I think but sadly have not yet managed to regain the rest - think ill have to put my old clothes in the loft! But I'm not underweight and it could be worse. Tbh I don't force it now - yes it would be lovely to regain the last stone but I was miserable forcing myself to eat all the time and actually I haven't lost any weight (well maybe a kilo) and enjoy food a lot more. I know you have to force it towards the start of recovery but after a while it comes easier - then in the not too distant future will come the day when you actually fancy something!! :) I had a craving for a jam doughnut the other day so I bought one - the jam was a bit sickly but the doughnut bit was lovely! Sorry for rambling and hope some element of this has been of some use. And sorry for lack of spacing - I'm on my phone and this is how it does it. Good luck on the rest of your recovery journey. Emma
  • Emma - Many thanks for this and I am pleased that you are doing well. I was actually 1.5 stone over my normal weight when I started the RT. I have weighed 8.5 stone for 30+ years but last year due to stopping smoking and menopause I was 10st. I lost 9lbs during treatment but now have lost a further 9lbs since I saw my consultant on 6 Jan - she keeps talking about a PEG which I will not have.

    Anyway I have stocked up on cakes & biscuits and I can drink milky coffee (only once per day) I just have no appetite for savory food at all. (could not even eat Macaroni Cheese if I was fighting fit.)

    It appears from all the replies that things do get better but it takes alot more time than I am allowing for.

    Can I ask where you had your treatment Emma?

    Jayne

  • Wow, it's funny how different we all are! I can do savoury but struggle with sweet - it tastes too sickly! My favourite biscuits are malted milk dunked in coffee! :) How times change! Was going to suggest coffee, especially lattes - that's my little treat now that wine and chocolate taste horrendous. Maybe you'd enjoy custard? Have you tried that? Good that your weight isn't a worry. I was berating myself for having lost a stone in baby weight before I was diagnosed! Doh. Hindsight is a wonderful thing. My treatment was at St James's in Leeds, though after my 4-month PET I was discharged back to the head and neck team at Pinderfields in Wakefield. I can't believe they're trying to give you a PEG when you can eat and drink! As soon as I could drink the right amount of Fresubin and eat a bit of soup they took my NG tube out. Yes it does get better with time. I know it seems to be taking ages but when you look back in a few months it'll seem like a miracle. This Christmas I was a bit misty eyed as I ate Christmas dinner, remembering how I couldn't eat anything the year before! :)
  • Oh and forgot to say - congrats on stopping smoking! :)
  • Thanks Emma - it was after stopping smoking in April 2012 that my troubles started - I too had my treatment at St James and all concerned were wonderful. Anyway I am going to listen to my "Ruth Kaye" tape - you must know who I am talking about (which I have on every night) that along with 1/2 a lorazapam tablet send me to sleep and prevent my mind from going places I do not want to go.

    Quite late for me is 9.15 pm but sat withmy lap top in bed is quite relaxing and is keeping my nausea from the forefront of my mind.

    Jayne

     

     

     

     

     

     

     

     

     

     

     

  • Hi Jayne, Sounds amazing, 9.15pm, can only dream of getting to bed at that time - once I've got in from work, done tea, put my daughter to bed, done the housework and done all my stretches and neck and jaw exercises it's always later than that. This is something I need to work on though as the lack of sleep is making my (only slightly residual) fatigue worse. Anyway yes I've heard of Ruth Kaye - what a small world! :) I went to see her once at the start of my treatment as the first lot of chemo (or possibly the steroids) gave me very bad dreams (kept having a recurring nightmare that my little girl kept being in the radiotherapy room with me) and made me very anxious and I had a session with her - it was v relaxing. Unfortunately I wasn't able to get to her again as my treatment was usually late and she went home before dark. She's good though isn't she? Very relaxing. After my treatment finished a had a few sessions of various things (reiki, massage, aromatherapy, manicure) up at the Robert Ogden Macmillan Centre (round the bank of the medical library, past Gledhow wing and right). They will also give you tea and coffee and a biscuit or two (does the weight gain no harm!). Have you been there? It's a lovely place. Good to go to just for a cuppa and a chat. They also hold the 'look good feel better' programme there, don't know if you've heard of that? I went along and it was great. A real boost. There's usually a bit of a wait bit it's well worth it.
  • Hi Ted - Just wondering how things are going for you and your partner? I changed my meds to Ondamet anti nausea tablets and I have been slightly better - but the nausea still comes early evening and I really struggle with savoury food.

    I was also wondering how many scans your partner had before being told anything by consultant. I have had an MRI last Tuesday and have an appointment with Consultant on Wed 3 April.

    NB I did find some naso......... postings going back a year or so but nobody seems to have updated their status.

    Would be nice to hear from you

     

  • Hi Jayne, sorry for the delay in replying.  I have been trying to get an accurate measure of my partner's progress so you can compare with your own.  This Easter weekend will be the one year anniversary of the end of treatment, i.e. the last of the daily radiotherapy.  I think he had 30 sessions. So that's April 2012.   Things went down hill for at least two months.  The Jubilee weekend, June 2012, was probably the lowest, so two months after treatment ended - nausea, pain, toxicity from drugs/radiotherapy, inabiltility to stay away (due meds), malnutrition, suicidal thoughts, despair.  It took a further two months (so, four after treatment ended) for a gradual return to normality as the painkillers were reduced, intake of calories slowly increased.   Now, a year later, most things are edible, except "dry food" - meat/chicken/fish/bread - and last couple of weeks a triumph in that he had a mild curry which he says really cleared his sinuses.  Still no alcohol, but that's not a bad thing.  Still suffering from mucuositis (?sp), still blows out "muck" now and again, is very thin (but no longer a skeleton), feels the cold very very much - so the recent weather has not been good.  Even with thermals and the fire on full, he can still be cold.  I have read this is a common sideeffect of chemotherapy.  Appetite has returned.   Funnily enough, however, he said the other day he felt "sick" for no apparent reason, so it seems the waves of nausea persist.  I commend you trying acupuncture or any other complimentary therapy.  He suffers from severe claustrophobia and had to have a course of hypnotherapy before facing the mask.  It worked, though he still popped a pill before going under.  As for scans, I think - but can't be sure - much of the last year is a haze - he had an MRI about 10 weeks after treatment, but has had nothing since.  He goes back for regular checks with an inspection tube up the nose.

     I don't know if this helps you.  Sometimes it is reassuring however to hear/read of other's experiences.  Take care.  Let me know if I can help you in any way at all.