RCC / Lungs / Immunotherapy

I haven't got any answers for you but wanted to follow your post. My husband has just recieved the news that he has secondaries in his lungs after a primary diagnosis of kidney cancer 12 months ago (it was 9cm). He's also been suggested that this dual treatment. 

Hi Mrs Oakley, nice to meet you! :-) I'll update you once treatment starts on how it goes.  How is your husband in himself?  Did he have any initial treatment for the cancer?  

Hi. Nice to meet you too. He had a nephrectomy a year ago to remove his kidney and 9cm tumor and adrenal gland. Then two monitoring ct scans 6monyhs post op and 12 months post op. We thought he was clear but there are now nodules.in his lungs. Hopefully starting immunotherapy soon. They said because of his age and health that there are lots of options. 

Can I ask how old your husband is?  Mine is mid 60s.  The care we've received over the last 8 weeks has been amazing from initial referral through diagnosis, biopsies, scans etc, so we have the assurance of a great team behind us to support us as we start this treatment.  So we are just starting our journey, whilst you and your husband have had this to deal with for 12 months.  My feeling is our story would have been the same had we had any symptoms and managed to get checked earlier, but no point in wondering about what could have been.  We are just positively looking forward and hoping we respond well to the immunotherapy as planned.

Looks like you’ve been  offered the best treatment option.

Good luck

I'm on ipi/nivo and it's going fine, everything moving in the right direction (bloods, energy levels).  First monitoring scan due end of the month.  Treatment takes 3.5 hours, if you get both drugs at the same visit.  Some places you get a single drug a visit and then have more visits.  You get a couple of meds to take home in case you experience the main two side effects (sickness &  Diarrhea).   

The haematology/oncology specialists at my local have the view that people generally tolerate this combo therapy well.  My oncology consultant's experience is that 60% of people experience some side effects.  

Think about how you are going to spend 3 hours hooked up to an infusion machine.  I take in a laptop & headphones and watch a film.  Others read, some snooze.  Some people chat - you might get to know people on the same x week cycle.       

Thanks.  You look like you've had quite a journey.  Be good to hear more about the diet plan you've followed.  It is so important.  

Thanks Mmum, really good to hear that you are doing fine  so far on Ipi/Nivo.  Sounds like we are just behind you on the journey.  He will be getting both drugs at the same time.  I've prepped for the hours we anticipate being there - ipad is loaded up with films, books, podcasts etc!  However, after all that, he will probably have a snooze!   

I'm new to all this so just starting out and haven't got a clue ..I have 9cm tumor on Kidney until recently no symptoms although stomach has been bloated for years GP put it down to menopause ..I have had nagging pain under rib cage since December which prompted me to go to Dr currently self isolating got MRI next week and biopsy on 15th March ..I now have what I can only describe as a burning acid sensation in lower stomach not sure if coffee may be aggravating it and not sure if to take any pain relief ..I do not take any medication at moment ..Any tips please ? 

He's only 44. He has quite a manual job and he must have aggravated the cancer lifting something and it caused a bleed. So he had quite a lot of pain and blood in his urine. By the following day it had all resolved. Had it not have been for that bleed we still wouldn't know about his cancer. The only reason these lung nodules have been picked up is due to the post op scans. He hasn't got any symptoms other than being a bit tired (but we've also got four kids). 

We're the same taking it as it comes and dealing with the treatment and scans as they happen.