Hope is fading

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Just a scream into the void to people who might understand. 

My partner has had a large tumour and kidney removed ( 18 months ago) but it had already spread before the op. Early scans showed spread into the lymph system; ipi and nevo were ineffective and it's spread further to lungs and liver. He's tried chemo tablets which also haven't worked and at the weekend was admitted to hospital for stomach pain which turns out to be his liver- it's saturated and does recent hasn't worked. The final treatment he's being offered is cabozantanib which may slow the spread but it sounds like he has months or weeks left depending on how well he tolerates it and whether it works where nothing else has. 

Mainly I'm writing as I feel so hopeless and don't know where else to turn. I don't know how to adult like this and it's so tough. Any advice on what we do now? How do we manage with this kind of prognosis? Do we research bonkers clinics in Mexico to give hope where all else has failed? Pray for a miracle? I just want to scream.

It's so unfair.

  • Hi, I can see why you feel like screaming! I don't have the experience that others will on here but the speed at which this has all happened to you both must be truly painful. I wouldn't presume to offer advice but I hope someone replies who has been in the place you are. All the best - I'm sure you will cope with all this, however tough.

  • Hi - I hear your scream.  It's rubbish/unfair/sh1t and everything else besides.  What a monster to have to get your head around.  

    Can you try and take a short term approach.  Forget the Big picture and weeks or months from now and try and live day-to-day. 

    Immunotherapy drugs are all different and there's absolutely  no reason why cabo would not work despite the ipi/nivo outcome.   

    There's also lots of people on this forum who have been advised there's not long left   but they're here, still posting years later in this group:  Living with incurable cancer forum - patients only .  There's also this group:  Supporting someone with incurable cancer forum  

    Have you phoned the Macmillan helpline for a chat?  I phoned them before and they're really friendly and supportive.  I am sure they would have some helpful advice or ideas.     

  • Hi, you are not shouting into the void...you are not alone. Sounds like you and your partner have been going through exactly the same as I have the last few weeks. My 14 weeks of ipi-nivo did not work at all and I have had significant spread in my body and it has got to my brain also. I was told to get my affairs in order as had short months to live (I don't feel like it. I'm only 44 otherwise healthy and have 2 young boys so cannot die). I was put onto dexamethasone and cabozantinib immediately and had high intesnity radiosurgery in Friday. The 2 MRIs i had a week apart on my head showed the cabo already starting to work. That went well but I started to have adverse reaction to the cabozantinib this weekend and have had to come off it already after the initial success. Hoping I can go back on at a lower dose. It has been a tough week. I'm covered in rash, glistening in steroid creams.

    I aim to try the cabo again, at a lower dose. There are other options too, everolimus and levatinib I believe would be 3rd line if cabo does not work or cannot be tolerated. 

    I would take the cabozantinib option before going fringe - there are still options.

    Very happy to chat if you need to. It is unfair but you are not alone. I'm so sad to know that someone else has been living the same hell we have the last few weeks. 

    Kind Regards,

    Sally (07743570000)

  • Thankyou for your support. Somehow I hadn't spotted any replies but just discovered them now. X

  • Thankyou so much. I'll check out some of those other groups and yes try to stay positive x

  • Dear Rose-Meteor,

     I really feel for you I know it is not the news you want to hear, I myself am on the fourth lot of treatment as my cancer was in both kidneys had left one removed and waiting for my bottom right kidney to be done, when as like you it had spread to my lungs and liver, I was on immunotherapy infusion of Nivolumab for six months it shrunk the lungs tumours and than I went on the Cabozantinib which worked for 18 months, than I was on Lenvatinib and Everolimus but after 18 months that stopped working and was affecting my right kidney, so I am on Axitnib went for my three monthly scan last Tuesday I have my fingers and toes crossed that this is working, I am seeing my oncologist next Thursday to get results, all we can do is pray and hope it is working and keeps as going as long as possible, I have been nearly four years after, when I was told I had months to live and to get my life in order, I am praying for you and your husband try to stay positive and know you are not alone sending hugs and best wishes Sandy 

    Sandra 55
  • Thanks for your reply Sandy. All the best for your next scan, I hope you get good news. X

  • Rose_Meteor,

    I’m in the exact same boat as you.. We (more accurately my husband) has been on Cabo for the last year (he keeps the pill boxes as trophies for still being alive). The last scan showed no change which is a victory in itself but we have the next results on Tuesday this week and i am absolutely petrified. Stay strong for him is all i can say… at least that is what I am saying to myself.