Sore eyes

Former Member
Former Member
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hello......haven't been on here for a while....am now on 5 1/2 weeks radiotherapy with capecitabine tablets .....not to bad to start with....except sore mouth...which has got worse...sore dry tongue and inside of mouth...sore throat....and my gums were bleeding...and painful teeth....I got a soft toothbrush...which helps stop gums bleeding...but still painful on gums...also my eyes are very sore...and a bit painful when I squeeze them shut!...and inside of nostrils very sore....face sore.....just wondering if all this is normal?....I'm having this treatment before surgery for mid/rectal cancer...but have just been reading that all, this can cause problems with healing after surgery....and nearly always causes infections....

i already had to stop the oxaliplatin after 2 infusions ..instead of 4 because of throats restrictions neuropathy and heart trouble....I find it so very hard to take all this stuff which seems to be so damaging...that it becomes hard to believe that it will do any good.....and if it doesn't work...then what was the point?  I also have painful sores in vagina area...which is too embarrassing to talk about really......never had anything like that before....I think it must be the pelvic radiotherapy ? I keep bathing and using Vaseline....but to no avail.....has anyone else had these problems ? Would be grateful for any advice. I can't talk to the radiotherapists...as they are all young men...in fact ....they all look like teenagers!  They are all very nice and seem experienced...but it is hard having all these young men manipulating your bottom around ...let alone discussing vaginal issues  Disappointed

  • Hi 

    So sorry to hear you are having a rough time ! I think my mum had every side effect yet she sailed through surgery in clinical terms of infection and healing ! I am not sure where you read that but anything like that you can chat through with your surgeon and they have the breadth of experience to reassure you with . Your oncologist could do the same . A point I also learnt to do was look at the size of any research article to see how many people were involved in the study ! Some clinicians may feel it draws a conclusion whilst others may feel there is too many variables to make a direct link or the size of the study was too small to make a general statement on ! Sometimes you need to read another angle to see where the line is . If there is an issue regarding healing and infection you could ask in advance how to reduce the risks or how do they manage this post op! That might give you a handle on it !

    I have enclosed a leaflet below on sore eyes as you might want to chat with your team about that to see if they can help you .

    I can totally understand your concern regarding the vaginal area . Our helpline staff might have some access to the Macmillan nurses to see if they can assist you . 0808 808 0000. 
    Or speak with your specialist nurse/ oncologist if they are female and explain your situation .

    If you are concerned you could email your radiotherapy unit and explain and ask them for guidance through email rather than face to face !

    I totally understand your hesitation but you need to know the best way to treat it . 

    You are nearly over this hurdle and you have had a tough time . 
    Sending you loads of strength and comfort .

    Court 

    Helpline Number 0808 808 0000

  • Former Member
    Former Member in reply to court

    Thankyou Court...good advice as always :) I managed to have a chat with a female radiotherapist..and she gave me good advice and some gel...which has helped.....hopefully I can find out more about forthcoming operation with surgical team? When I finish this course....I have to wait for 6 weeks before I can have a scan to see if it has worked to reduce the tumour...is this normal ? Seems a long time to wait....also.is 3 cm considered large to be reduced?  I couldn't see the link for the leaflet about sore eyes...that is a problem...I have theoloz duo eye drops ...but they are still so sore..I can hardly keep them open...I'm worried they won't get better...

  • Hi 

    I don’t think it’s you that has a problem seeing the link , I think it’s me that has forgotten to actually link it in . Let me find it for you . 

    People here seem to refer to six weeks after radiotherapy too as I think it keeps on working for a bit after treatment finishes . I think 3 cm is not too big ! I will link in  I seem to remember her talking about sizes before !

    So glad you got to speak to someone. When I was younger that would not have bothered me but not now ! I would be in the same boat ! But so pleased you got some help ! https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/capecitabine


    https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/radiotherapy-for-rectal-cancer

    The radiotherapy leaflet also states it continues to work after treatment finishes so they wait for a bit .

    The eye aspect in the leaflet suggests you watch out for conjunctivitis. So you might like to give your team or your GP a phone just to be on the safe side . 
    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi . Yes 6 weeks is totally normal - in fact I think I was told 8-10 at my planning meeting - because the radiotherapy carries on working for several after the actual zapping has stopped.

    My original tumour was 4cm but shrank to 1cm after chemoradiotherapy which allowed the surgeon to get it away with clear margins. 

    I know I was checked over by a nurse part way through my treatment and she checked the skin around my bottom etc. so they do keep a close eye on you but I’m glad you’ve managed to have a chat with a female radiologist and hopefully some of the side effects will start to improve

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Former Member
    Former Member in reply to Kareno62

    Thankyou Court and Karen.....very reassuring to know these things....Irene x

  • Former Member
    Former Member in reply to Former Member

    Another thing to worry about ....I've got a sore patch on my forearm that GP calls actinic keratosis ...and has prescribed fluorouracil cream...which he says will crust up and be painful for several weeks.....but I'm worried that being onchemoradiotherapy capecitabine tablets if this will be not a good idea ? I have been getting sore and tender skin...and red sore feet and hands.....could the treatment be affecting this keratosis on my arm ? It has got redder and more sore lately....any advice would be appreciated....my doctor wasn't a lot of help..and seemed to be too busy ....I was hoping to be recommended to see a dermatologist  .. also.....is there something kinder  I could treat it with rather than drastic chemo cream ? Irene