Just a quick update I have been on the LOGS trial since February 2017 I had my second CT scan last week and the results were very encouraging shrinkage in all the sites they are monitoring and either stability or shrinkage in the ones they are not. I still have pleural effusions but they remain small.
I am still having issues with my breathing and have been waking up in the night gasping for air. There is lots of mucous at the back of my throat and oncologist has suggested post nasal drip but has not suggested anything that would help. I have been to my GP a couple of times and they thought maybe acute bronchitis or asthma. I was prescribed an inhaler but not given much advice on how or when to use it.
I have to have regular echocardiograms whilst I am on the trial as damage to the heart is one of the potential side effects so I haven't been prescribed my next cycle until after my next echo which is on Monday. Then I have to go back next Wednesday to see the oncologist.
I did get a bit tearful in clinic because I felt like no one believed me but the nurse rang me yesterday just as I was coming through the door of my flat and I was really out of breath from walking up the stairs so I felt a little vindicated.