Treatment of Metastatic RCC

Sorry to hear your scan got cancelled, especially after you had already travelled there and had the injection.  Just one of those unfortunate things but there are definitely nicer things you could have been doing in Cheltenham.  I've only passed through on the way to the Cotswolds and it did look lovely. 

Mine is very similar size tumour to yours. You had a long wait too then.  It is distressing to be waiting so long, especially when I read on here about people who wait around 6 weeks, some even less than that.  That was brave to make a fuss ... I'm a bit concerned to do that when someone will soon be taking a scalpel to my abdomen!  Will have to see if there is anything that can be done to speed things up though.  I know I am on the list so not been forgotten about.  Hoping it will be this side of Christmas. 

Interesting about weight loss.  That was a lot to lose in a month.  I have been losing weight so will hang on to my clothes then.  Didn't realise it would go back on ... I'd like the weight loss to stop but don't want to regain the weight!  Strange your taste has changed ... wonder if that's down the meds?

Let us know how your scan goes if you feel happy to do so ... when they get the machine fixed, of course!

Hi MaryH

Hope it went OK today.  Don't worry if you're not up to replying ... I imagine you have a lot to process.  These things can be surprisingly tiring.

Hi Mary H. 

My experience is very similar to yours as I had the right kidney removed as I had a 20/14/10 cm tumour attached to it.  Everything was good for a year or so but then they found mets in both lungs, my liver and pancreas. 

I went through immunotherapy but that didn’t work at all. So at the minute I’m on a drug called Tivozanib which has stalled the growth for about 12 months so far. Tivozanib has an average effectiveness period of 10 months so I feel like I’m on borrowed time but no bad side effects so far. 

Good luck with the appointment and hope you get effective treatments that works well for you. X

Well things have now moved on very quickly.  My oncologist confirmed liver lesion growing faster than expected so will start combined cabozantinib and nivulomab treatments. But there are suspected lesions now on thoracic spine so I had an MRI on Monday.as they don’t have enough detail yet.  I am to see the oncologist again  on Thursday and hopefully will get the MRI results then.  I will also be given the tablets and the immunotherapy infusion will start middle of December.  The MRI will not necessarily confirm cancer  on the spine and I may be offered a scan at the Nuclear Medicine Facility and/or a spinal biopsy. Radiotherapy is also another option for the spine if cancer confirmed. 
I’m pleased - and worried - that things are happening fast.  Still symptomless apart from lower back pain, which I had put down to “old age” but as it may be referred pain from my spine I have been prescribed steroids until my other treatments kick in. Unfortunately they seem to be giving me insomnia.  Lucky white heather!

All good, PET scan showed still dormant or contained, so just continue on immunotherapy. Thyroid hormones reacting a bit so keeping an eye on those- maybe why I’m very tired sometimes. Anyhow all good so can look forward to another year of the same maybe, just wish I could run around or have a holiday somewhere hot

DO let me know how you get on, the web site is better now as it shows activity as I used to be rather lax about getting on it. You will be fine. I ended up having a chevron incision but I think I saed through it well. Just take your time and do not rush- it’s your time to look after yourself, with a lot of help from others. Plus don’t discard clothes, I went down to size eight but back in old cothes now. I’ve cheered myself up by buying a load of new ones this winter to cheer myself up. Indulge in using a few savings if you have them.this time two years ago I was in the exact situation as you, all will be sorted soon. The waiting was worse than absolutely anything, being admitted was almost joy!! I had embolisation day before surgery- has this been mentioned?

Sorry you are having a difficult time. You can see from my missives that I’ve had a lot of treatment. I was put on immunotherapy after surgery as my growth was huge, I had an almost immediate unfortunate serious reaction and was taken off for 6 months and meanwhile many mets grew in my abdomen so they fill me with Levatanib and Pemrolizamub. Drugs used depend on many things and seem to work wonders for  people. They have certainly shrunk all my very big secondaries, they’ve disappeared. I know I’m not cured but it’s wonderful to know something is stopping it in its tracts.

we are all very different and my most distressing thing is my osteoarthritis. I have awful hips, and was going to have them replaced until this cancer got in the way. I also get reactionary arthritis to the drugs but I can cope with steroids and pain killers. Never thought I’d have a mobility scooter at 75, but it is a purple one. There are things mentioned ( side effects) when you take these drugs and you need to read and take note so you won’t be worried about any side effects. Most are trivial, I’m going through a can’t taste very well phase and don’t like meat again, as an example. Just wait until you know what’s what and have some questioners ready. I have found my help lines have been excellent- any worries and someone is at the end of the phone. You will feel well supported I hope

Hi Mistoff

Excellent news on your PET scan results.  I will let you know how I get on.  Still waiting at the moment ... yes I think I will be almost ecstatic to have surgery - and that's not a statement I ever thought I'd make!

Embolization has not been mentioned to me?  

Hi MaryH

I think they have targets to meet when there is a recurrence so it is for the best that it is all happening so quickly but I can see how it would also be alarming.  These things are always concerning times. Sounds like it has all been a bit of a whirlwind.  Reminds me of how it was when I was first referred.  There was a succession of appointments with barely time to catch breath.  Good luck with the meds and scans.  As always, I am interested to hear how you get on.  Hope you get a good night's sleep soon! 

1. I had radical nephrectomy june 2023 just before my 60th birthday. All good until they told me recent scan showed nodule on the other adrenal gland 1.5cms. Also small one on thyroid but they dismissed that as not concerning after an ultrasound but im stimk worries about it.surgeon said he will probably remove my adrenal gland in March so i will need hormone steroids for life.No lesions showed anywhere else x