Stage 4 adenocarcinoma

That’s great news Fsake. Southampton hospital is a great hospital, they will take good care of you there. 

Hi well been through my radiotherapy that was a breeze and now back on the immunotherapy. 

Hi Fsake I hope your treatment is continuing to go well? My mum was recently diagnosed with stage 4 nsclc adenocarcinoma. We’re still awaiting some test but it’s looking like she’ll have Chemo and Immunotherapy, and is having a meeting to decide if she’s like to be part of the Saron (trial) if she gets chosen. Not many people are talking about the Saron trial I wondered how you are finding it? Mums primary is very small in her lung, travel through blood to pelvis. It would be great to hear from you if you’re able to many thanks Lucy 

Hi lucy, yes the trial is working for me i had immunotherapy then radiotherapy and now back on immunotherapy just coming up to a year in. The only issues I've had is with my veins but i now have a portacath the treatment has so far stopped growth and spread that's good as its in my lung adrenal glands and lymph nodes,  hope this helps any other questions feel free to ask.

I am in the same boat, s

Sorry, somehow messed up previous post. Sounds like we have almost identical diagnosis. Tumour in right lung, spread to right lymph nodes and adrenal gland. Second round of Pembro last week and then CT and “lottery” for SARON. I have to admit to being quite scared of the radiation if it comes to that. Are you able to share a bit about your reactions/side effects from the radio therapy? 

Everyone is different when it comes tolerance to radiotherapy, i had 4 weeks targeted on my lung and adrenal gand the only issue i had was extra fatigue and towards the last week i had discomfort swallowing food but was given oral sedation to numb the throat and gullet that was only for a few days. Went to Churchill hospital in Oxford to have the aortic lymph node done in my abdomen that was a 4 week dose dropped in to three sessions over one week very high doses but no side affects at all not even the runs as expected, don't fear the treatment its there to help i understand you have some nerves but ride it out tell the team if you feel ill they can do things to help, the thing i find the oddest is even though i have been told I'm terminal i don't feel ill I'm no spring chicken but I'm back at work. Good luck keep us posted any other info message me back.

Thank you so much. Really puts my mind at ease. Like you, I don’t feel ill at all, so it’s all a bit surreal. I may well come back to you down the line. Till then, wishing you a continued positive journey!

Thanks for the update Fsake. I am 12 months into immunotherapy {Cemiplimab} and will start a two and a half week course of radiotherapy on the 8th to give it a jump start again as I've stopped responding and tumours have grown. 

Your positive post gives people hope! 

little-fi 

Hi RJN1,

Just wanted to wish you well on the Saron trial if you are successful in getting on to it.

little-fi x