Recurrent HxN.

FormerMember
FormerMember
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Hello all

 Venice here, back for support as all is not well with husband on Pembro since April 2020,(after Radio, mandibulotomy). 
Tumour (behind left jaw) has grown a little again, 2mm, causing loss of hearing and making speech more difficult.
No pain yet but he s adamant he isn’t  going back on all the morphine and paracetamol he managed to wean himslef off completely last Summer with great difficulty. 


it s seriously depressing, especially since we have not seen the children and grandchildren for yonks (April?). 

What is proposed now if another MRI shows growth early Jan is either regular chemo or a trial drug Lenvatinib. Has anyone had that?

i know you all have your own issues so I shouldn’t make a fuss, but it s tough going  

Venice

  • Hi Venice So sorry you’ve found  your self back on here again. Thought I would answer you sorry can’t help with choices you’ve been given hope your team can help you reach a decision that you are both comfortable with. 
    There are a few on immunotherapy drugs thinking of hopefully she will pop on 

    covid-19 has split more families up and having a cancer return can't be easy for any of you.

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hello Venice. So sorry you are both in such a fix. I hope something can be sorted for your husband. Is there any counselling available? It might help with the way he’s feeling though I suspect seeing your family would lift spirits much more. I can’t recall anybody here on Lenvatinib. There are two people on Cemiplimab but that acts on the same target as Pembro whereas Lenvatinib has a different mode of action which is probably why they are trying it. 
    There are trials showing promising results in combination with Pembrolizumab
    Do let us know how things go. 
    Thinking of you and sending you both a hug. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Venice.

    So sorry to read about your husband.

    Please.dont think you're making a fuss posting on the forum.  Everyone's here to help and support as best we can no matter what the issue as we understand how tough it is.

    Fingers crossed that a successful treatment is forthcoming.

    Linda x

  • Hi Venice,

    So sorry to hear of hubby’s continuing battle. I don’t know anything about the drug you mentioned so I just looked it up briefly and the side effects look pretty harsh. The plus side is he doesn’t need to go into hospital for the treatment as I’m guessing he would for chemo?


    I can understand your dilemma in choosing the way to go forward to make life as comfortable & pain free as possible for him.
    I’m sure his team will be giving him/you lots more info on both so you can make the right decision. 

    I wish you both all the very best and hope you get to spend some time with your family. 
    Please let us know how you get on.

    little-fi xx