Havent been online for a while. It has been NED for quite some time now but alas, not this time.
Wanted to provide an update on my Mum and also ask a question.
- The last time Mum has chemo was back in Nov-09 with post operative Alimta.
- She was NED for 6 months then a solitary nodule appeared in her superclav which was radiated. NED for another 6 month then it came back again in exactly the same spot.
- Surgically resected July 2011 and she has been NED for 21 months until today.
- April 2013 a single spot has appeared on her liver with an SUV update of 6.8.
- She has tested +ve for ALK rearrangement
- Onc has suggested removing the spot from liver but will discuss at next multi-diciplanary lung meeting to seek advise and will contact colleagues at MSK for advice
Is there anyone else who is ALK +ve and has has similar experience (ie surgically resected primary adeno but excellent response to aggressive treatment with long periods of NED in between recurrence) who is on crizotonib? Keen to hear from you to see how you are going in terms of results to date and general health.
Am over emotional and devastated. Was just really getting used to the smiles after leaving Dr Pavlakis' rooms. Oh Well - all of us on this forum deal with this amazingly broad spectrum of emotions every single day. We march on.