Immunotherapy treatment following radiotherapy

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Hi,

My mother has cancer of the larynx on her voice box. She initially was diagnosed with stage 3 cancer and had 30 sessions of radiotherapy to treat it.

The treatment failed and my mother was told her only other options were removal of the voice box as a currative treatment or immunotherapy to possibly slow the growth.

As my mother is 83 and has severe arthritis in her hands she did not  want the laryngectomy. This was very hard for myself and my brother but we are eventually trying to accept her decision.

She has now had 6 sessions of immunotherapy and the last scan showed the tumour had grown in size but not spread.

They are still giving her immunotherapy and the consultant said he would like to give her more radiotherapy.

He did not explain what this would hope to achieve and we were busy that day, trying to get her another ng tube fitted after she was failing to drink and eat orally without choking.

We have not been able to discuss this situation with the consultant yet but I would like to know why another course of radiotherapy is being considered. Are the chances of it shrinking the tumour likely?

Also she suffered a lot from the after affects of radiation with continued thick mucus and feelings of choking especially at night. She is quite weak now in general and has lost several kilos in weight.

Any advice on this would be very much appreciated.

  • Hi Kizzi1

     My name is Joanne and  I’m one of the Cancer Information Nurses here at the Macmillan Cancer Support line.

    Welcome to the online community. I can see that you have joined our Head and neck cancer forum which I hope you are finding useful. You may also find our Family and friends forum another source of support.

    I’m sorry to hear that your mum has been diagnosed with Laryngeal cancer and that you are facing some ongoing uncertainty about what the next stages of her treatment will involve.

    As nurses on the support line, as we don’t have access to individual healthcare records, we would encourage you to contact your mum’s team again to ask for further information about the treatment plan that they are proposing and what the aim of the treatment is.

    It is likely that after your mum’s most recent scans, a Multidisciplinary team meeting will have considered the response to her treatment so far and then looked at options for further management of the cancer and any potential symptoms it will cause if untreated.

    The team will often consider treatments where it is expected that the potential benefits will outweigh the side effects of that treatment.

    Whilst the immunotherapy has not reduced the size of the cancer, it may be that the team are anticipating that by continuing this treatment, the risk of the cancer spreading to other areas of the body is reduced.

    Radiotherapy for head and neck cancer works by destroying the cancer cells with the aim of shrinking the tumour itself, either completely or partially. As your mum has already experienced Side effects of radiotherapy it is natural to be concerned about the impact of further treatment and it is important that you are able to talk through these concerns with the team.

    The decision to offer further radiotherapy to the same area of the body is made with careful consideration of the potential benefits which may include shrinking a tumour to reduce some of the issues with swallowing or breathing or to reduce the risk of pain or bleeding.

    The team will look at her previous radiotherapy treatment, including the dose of radiotherapy she was given and how long ago the treatment was done. These factors would be used to decide on the safety and potential benefit of further treatment at this time. They will also consider her overall fitness and ability to manage the treatment and any further side effects.

    Before speaking to the consultant, it may be helpful for you and your mum to have a look at our information on Making treatment decisions . This can help you to prepare for the consultation and allow you to ask the questions that are important to you. It can be helpful to write those questions down before your appointment.

    You’ve also mentioned that your mum has had an NG or Nasogastric Tube inserted to help with her nutrition. You may find this information on eating well when eating becomes difficult useful for some general information but please do continue to liaise with your mum’s team for their specialist advice and input.

    I hope this information has been helpful. Please do let us know if there is anything else that we can support you with and do consider giving us a call on the support line as it can often be helpful to talk things through in more detail.

    Kind Regards

    Joanne

    Ref JH/HM

    Joanne H - Cancer Information Nurse Specialist

    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 00 00 (7 days a week, 8am-8pm) or by email.

      

  • Dear Joanne,

    Thank you for your advice, it is very helpful.  My mother has recently experienced a blocked nose with mucus and dry throat now that she is not swallowing liquids. She becomes very distressed feeling that she can't breathe and has now had bleeding from her nose which she thinks may also be from her throat. She was picking it a bit due to the dried mucus blocking it. She is now  finding it hard to sleep at night. 

    She uses a nebuliser and has used a humidifier. I suggested washing her nose with warm water but she thinks this will make it bleed again.

    Any suggestions would be helpful. 

    Kind regards,

    Kizzi

  • Hi Kizzi1 

    Thanks for getting back in touch.  

    My name is Paula and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line. 

    I am pleased to read you found my colleague Joanne’s advice helpful, but understand you still have a few concerns around mum’s current symptoms. 

    Sounds like your mum has been through a lot and is still potentially struggling with some of the late effects of treatment. Therefore, I can understand your concerns. 

    Here at Macmillan, we can give general advice and support. We are independent from the NHS and don’t have access to medical records so cannot give personalised information. 

    Unfortunately, the symptoms mum is experiencing are common side effects of head and neck cancer treatment. This is possibly due to the Radiotherapy that can damage salivary glands resulting in a dry mouth, excessive salvia and mucous changes.   

    They can be difficult symptoms to manage on your own, but getting the right support for mum can help to minimise the symptoms and hopefully make her a bit more comfortable.  

    It’s important to continue with the nebuliser and humidifier as prescribed.  We would also suggest as mum has new symptoms, to report these concerns to mum’s team as soon as possible. They are in an ideal position to offer further advice and support to manage mum’s current symptoms. The Speech and Language Team (SALT) can also help. 

    You may find this link helpful to look at for advice and further support. They also offer 24/7 patient and carer support.  

    I know this a worrying time for you, so it’s important that you don’t feel alone. Here at Macmillan, we offer a range of support and services you can access. You may find this link helpful to look at.  

    I hope you find this information helpful. Please don’t hesitate to get back in touch. 

    You can always give us a call. You can talk to one of our nurses on the support line. It’s a free phone number on 0808 808 0000 and we are here 7 days a week, 8am-8pm or email us.  

    Best Wishes

    Ref: PW/ AC 

    Paula-Cancer Information Nurse Specialist