My mother in law has just been diagnosed with aggressive metastatic renal cell carcinoma.  They haven't said which stage or grade she is at, but the tumour is twice the size of her kidney and it has spread to her lung, the lymph nodes in her neck and her oesophagus.  From what I've read online, I think she is stage 4?  

She is an obese lady with a history of strokes, she has hypertension, a heart mumur, and an underactive thyroid.  She also suffers chronic pain in her spine from an injury she substained whilst a carer some years ago which requires regular morphine.  We suspect that this is the reason her cancer was undetected for as long as it was.  She presented no symptoms until she got a water infection, and the cultures highlighted a problem.  Suffice to say, this diagnosis has been a massive shock for us.

Ok, so the consultant is being very evasive with information and treatment options for her condition.  My husband and I have asked for a meeting with her this Friday to make a treatment plan.  She has said she doesn't want to remove the kidney and the largest tumour but hasn't given us a reason.  We assume it is because of the medical history mentioned above and her inability to move a great deal because of her spine pain.  She has said that she can go down the route of standard NHS drugs which I assume she means Sunitinib or Pazopanib, or she has offered her a place on a new drug trial where she could either be given Sunitinib or a combination of Axitinib and their new drug Avelumab.  Avelumab seems to me a similar drug to Nivolumab, in that it stimulates the immune system to fight the cancer rather than just stopping its growth like Sunitinib.  Obviously it's a 50/50 chance as to whether she will actually receive the trial combination.

I keep reading the side effects of Sunitinib are pretty awful, but I don't really want her to play guina pig on a trial however good the drug claims to be.  She had her biopsy a week ago and developed a huge blood clot on the tumour, which required a week's stay in hospital to recover as she was so poorly.  Don't think she'd cope well with all the additional tests required on a drugs trial.

What I'd like to know is has anyone actually tried the Axitinib/Avelumab combination drugs on this trial, and if so, how are you finding the side effects?  Has it helped halt the spread of your cancer?

How are those on Sunitinib or Pazopanib finding the side effects?

Without having had surgery, are your tumours shrinking with the first line response drugs?

Thank you all