Head and neck radiotherapy for Lymphoma

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Has anyone in the group had low dose radiotherapy on their head and neck area. My first treatment appointment is on Monday and although I’m not worried about the actual treatment, I’m finding the possible side effects are causing me a lot of anxiety as I don’t really know what to expect. I have read blogs from people inthe head and neck group but not sure how severe any side effects may be with a low dose treatment.

Any feedback would be much appreciated.

Best wishes to all

Teresa x

  • Hi Teresa ..... I do understand your anxiety especially if you have been looking at the Head and Neck Group.

    The treatment of Follicular Lymphoma and the types of cancer in the Head and Neck Group can be rather different as these Head and Neck cancers can be very aggressive and solid lumps so the radiotherapy can very intense

    I had 5 radiotherapy zaps to the tennis ball tumour above my right eye. So had a full face lead mask made. I was also told that the tumour was falling over my eye there could be damage to my eye but in the end it was all ok.

    I then had 10 sessions of Total Lymphoid Irradiation (TLI)  where ever Lymph node in my body was zapped for a few minutes and this included my neck. This time I had a body mould to stop me moving about.

    I also had a few zaps on my nose again with a face mask and lead covering my eyes.

    Everything was fine, the setting up was all hard work especially as I have back problems so laying flat and being still was very challenge. There was some fatigue and dry skin but that was it.

    The TLI did stop my Lymphatic system working for a few years so was very open to infection but as this was part of my first Stem Cell Transplant it was all about going with the flow.

    Where exactly will the radiotherapy be focused and how many zaps? ((Hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike. Thanks for reply.

    The radiation will be directed at my nasopharyngeal & oropharnx. I know that it will be across my nose for nasopharyngeal area but not sure if it will be through my neck to the oropharynx at the back of throat. I’ve been told that I’ll get a sore throat and possibly mouth ulcers, thrush,dry mouth and could have patchy hair loss. They have assured me that I won’t need a feeding tube. Apparently attached  to my appointment on Monday is an appointment to discuss my mouth and tooth care post treatment. Not that I have a lot of teeth left because they’ve removed all of my bottom molars before treatment Disappointed 

    I will have a low dose zap weekdays for two and a half weeks. I know that they’ll look after me but find the thoughts of the possible side effects a little scary.

    Teresa x

  • Teresa  I will always say that consultants will highlight the worst case scenario. I was also told to expect sore throat and ulcers but it was very mild so did not think to mention this.

    I was given good mouth care products so used them to the letter..... setting regular alarms on my phon so I would not miss one care cycle.

    The accuracy of the radiotherapy is amazing pinpointing to the mm reducing collateral damage Thumbsup

    For my Stem Cell Transplant I had to get a dental checkup and like yourself I have no back teeth so did not have any issues.

    I was also warned that I most likely will need a feeding tube due to the chemo they were giving me but having seen Head and Neck patients on the Oncology Ward when I was having my main treatments I was determined not to be put down that road and achieved it.

    Have all your questions ready for next week ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike 

    I wasn’t too happy about losing my teeth before treatment but I know it’s for my protection against jaw problems later down the line. I’m keeping my fingers crossed that like you, my side effects will be mild. Did you get any problems with your salivary glands?

    I have been told that I will be given products to ease any side effects that may occur. I suppose it’s like everything during this ‘journey’, everyone reacts differently. 

    It’s encouraging to know that you only experienced mild mouth side effects. I’ll try my best to think of this when my anxiety levels are peaking Blush

    Thank you

    Teresa x

  • From time to time even 7 years on from this part of the treatment I get a very dry mouth during the nIght so can drink a pint glass of water over the night and I always start the day before any food with another pint glass of water.

    I had a short time with gland problems and was given so sort of artificial saliva to try and help this

    Anxiety can at time be all encompassing but the more you get anxious the more fatigued you will get - do your best not stress stuff that has not happened as it makes dealing with challenges later that bit easier ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you for the information Relaxed