Hello All

Gigi1973.

Your not alone, I had the left kidney removed 27 months past, following a PET scan

Yes it was a bolt from hell when they said stage 4.

Read my profile for the story that followed. 

Still taking pills 720 days later. 

Cliff59

Glad to hear the meds are working for you. This gives me hope. 
At the moment they are not considering removing my husbands kidney or tumour as it is too big and complicated to do safely. The plan, I think, is to try to shrink the tumour and the re assess in a few months. The lung tumours are small but wide spread so hopefully any treatment will also slow down the growth and spread of those. We feel  so totally helpless and completely in the hands of the doctors.

Stay positive.

My cabozantinib started on 60mg, it's tough,  but you have to push through the boundaries, yea we did the tears, now it's the get on with it.

Stay strong an wait for the scans

1. There the tell tail

My husband was diagnosed 19 months ago , large inoperable kidney tumour which has spread to both lungs and pleura.  Even the metastasis in lungs measured over 5 cm and was widespread . He's been on immunotherapy for 18 months . He feels quite well but has only worked about 4 weeks in that time due to treatment initially but also covid and shielding.  Most pe6find they are very tired and different treatments have different side effects in different people . The immunotherapy if he can tolerate seems to be the kindest treatment but many people take a reaction to it and have to stop . The TKI's seem to cause sore hands and feet , frequent diahorrea also mouth problems.  Its different for everyone but once you have a plan of action from oncologist you'll get the info on his specific treatment.  

Good luck x

Hello Wcd

Thank you for your reply.  I think we will feel better once we have seen the Oncologist and we know what the plan is. We have had 2 weeks of just waiting for this next appointment which, after the previous 3 weeks of scans, biopsy’s, blood tests etc, has been a relief in one way but has dragged by so slowly. We just want to get started on the treatment now, fingers crossed, any side effects are mild. 
Hope your husband is doing ok. 
x