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Voice deteriorating while on treatment for Stage 4 Lunger cancer with Bone mets

Zafar
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I was diagnosed with stage 4 non-small cell lung cancer (ALK-Positive) with bone mets August 2024. The first line therapy worked well for the initial 5 months and was later switched to the second line immunotherapy (Lorlatinib). 

I had recently fainted and was admitted to hospital for five days. All relevant investigations were reported normal, and my blackout was thought to be the side effect of Lorlatinib. The dose was decreased and I am clinically doing relatively better.

However, my MAIN CONCERN is the change in my voice which started deteriorating both in terms of quality and volume. The Onco team has well re-assured me and also referred to ENT for further evaluation.

Is there anyone who experienced the change of voice in such condition and later got benefit from surgical/implant or medical management.

Please share and advise. I am worried with my very poor quality "new' voice.

  • Hi Zafar,

    Thanks for getting in touch. My name is Sarah and I’m one of the cancer information nurse specialists.

    It’s reassuring to hear that all your investigations were normal following the blackout and hope you are recovering well. However it’s understandable to feel concerned about the change in your voice and are happy to hear you have been referred to ENT for further investigation.

    It’s difficult for us to know what might be causing these symptoms as we don’t have any access to your hospital records.

    Lorlatinib has many common side effects including hoarseness. I wonder if this is something that has been mentioned by your respiratory team.

    It would be worth posting your question on our lung cancer forum as other people may have experienced similar symptoms.

    Facebook also has a private group Immunotherapy Support UK that might also be worth looking at.

    I really hope this information was helpful and you hear from ENT soon.  Please know, you can always give us a call to talk things through further.

    Take care and best wishes,

    Sarah (Cancer Information Nurse Specialist)

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email or use webchat.

    Ref:  SMc/AC

     

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