Husband kidney cancer

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Hi, my husband had full nephrectomy in January,  large tumour was also removed.  He has been suffering chronic pain.   Had ct scan and cancer was seen in spinal muscle lungs and adrenal gland of remaining kidney.

Immunotherapy starts on 22nd ipilmumab and nivolumab.

Can anyone advise on what to expect from treatment eg side effects, results etc

Thank you

  • Hi Best1

    Generally speaking, immunotherapy is 'kinder' than chemotherapy, and many people don't get side effects. However, you will be given a long list of possible side effects, some of which can be serious, and permanent. It is a big decision to take, but the benefits outweigh the risks, in my opinion.

    I had treatment with the two drugs that your husband has been offered. They shrank my tumours by more than 50%, and the smaller tumours have disappeared completely. I was not able to have surgery, as my cancer was too advanced, but the immunotherapy has got the cancer under control, and I am currently stable. These drugs really do make a difference!

    As to what to expect, every treatment clinic will have its own routines, but at my clinic, I was given the drugs via a cannula, and it takes a long time! You can expect to be at the clinic for several hours each time. I had to get blood tests done at my GP surgery a couple of days beforehand, and one of the nurses from the treatment clinic would phone me before the treatment day, to check I was well enough for treatment. I did not feel tired or unwell after treatment sessions.

    After 4 sessions with both drugs, I had a scan to check on progress. As the treatment had worked, I then went on to monthly treatments just with the Novilumab. This made the treatment sessions quicker! As my cancer is stable, I am now having a break from the immunotherapy, but I do have regular scans to monitor everything.

    I have had a couple of side effects from the treatment, one of which has required that I take steroids. It is unfortunate, but I feel it is a small price to pay compared with no treatment at all! 

    I hope your husband has been given a named support nurse, so he can get in contact if he needs to ask any questions. I phoned the Macmillan helpline before my treatment started, to get more information and advice. It was really useful!

    I hope all goes well for you both!

    Candysmum

  • Hi I'm just winding-up with a 2.5 year stint on ipi/nivo.  I concur with everything Candysmum has said.  Everyone's experience on the same drug can be quite different.  The drug info can be quite daunting when you read the side effects; nausea, itching, diarrhoea, fatigue and many other things besides.  But no-one gets them all.  I experienced side effects of dry mouth, itching, dry eyes, and immune system imbalances.  For me, the drug did what it was supposed to do.  Generally, I feel normal again now where as before I started the treatment the cancer had caused me to lose weight and feel fatigued (no pain).  

    The nursing specialist at my day unit remarked soon after I started the treatment "people generally get on well with this combination, it's not as harsh as chemo".  

    The time before starting treatment is the worst.  The uncertainty, the waiting, the thoughts of "what will it be like?", the what ifs, etc.  It's a common theme on here.  A week is not too long to wait.  I wish your husband all the best and please do come back and let us know how you get on.  xXx 

    Edit:  my treatment was after metastatic spread, so no nephrectomy.

  • So glad to hear you are still going strong !