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Infusion plus a tablet each day causing stress

lulu_1949
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My husband was diagnosed with kidney cancer 5 years ago and had the kidney taken out straight away successfully.

THEN it metastasised to each lung , 5 on the thorax  and on his head. So he has Kidney cancer on Lung and kidney cancer if the thorax . 

the seven lesions on his head were removed successfully,

he felt fine… no drugs regular ct scans

THEN he had the pet scan it showed it had spread to the spine and bones.. was still feeling fine. Life and soul of the party everyone loved to be in his company.

THEN the fortnightly infusions and daily tablets started and it’s been down hill since. His infusions are one hour long.

he now is so tired he sleeps all day, is feeling sick EVERYDAY and doesn’t want to go out, doesn’t want to see anyone. He is on sickness tablets and anxiety tablets but it feels like he is fading away from me. I am so distressed.

PLEASE PLEASE if anyone is on Nivolab infusion plus cabozantinib 20mg daily tablets please tell me it gets better. I don’t know what to do.

He has his next CT on Monday then we see the oncologist the following Monday .

kind regards,

Ursula

  • Offline in reply to lulu_1949

    Hi Ursula

    I am really sorry to hear this. Don't apologise for offloading - we all need to sometimes.

    The side effects I've been having from the treatments I've been lucky and tolerated well so far.

    I do know how frustrating it is to not be able to help him and not knowing what to do for the best. I lost my partner Colin in 2021. The doctors weren't taking his condition seriously enough (due to covid - which he didn't have - and them only treating him via telephone appointments) he had bilateral heart failure and finally a major stroke. Also I am currently looking after my father (Colin) and he's 86. His health is failing and no matter what he or I do nothing seems to work. It is very frustrating. 

    I hope the doctors manage to stabilise him and maybe change the dosages or the treatment to regulate or change the side effects.

    Claire x

  • Offline in reply to Freddie123

    Aww Claire I am so sorry about Your hubby and your father. I have been having trouble getting an appointment with our doctor who we have been with for over 40 years. You have a lot to deal with , bet your father is so proud.

    the hospital have just rung and said they can’t give him any more treatment while he is feeling like this and they think he has gone into a deep depression. My appointment with our local doctor I have finally got for tomorrow after did a sit in last Wednesday. Yes a sit In .Refusing to leave till I got an appointment. … 

    so I can have a chat to see the way forward. The hospital we're currently at have said would it be easier if you found somewhere more local.

    will keep you updated. Where do you live Claire if you don’t mind me asking? Xx sending all my love. Ursula xx

  • Offline in reply to lulu_1949

    Hi Ursula

    I'm sorry to hear about the problems getting an appointment. I live in West Yorkshire and I have my treatments in Leeds at a teaching Hospital. Where are you based? How far away is the hospital? 

    Claire x

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