Hi all,
I can’t believe it’s taken this long to get to update you on my original CT scan in February that picked up a nodule on my lung.
I was referred to another lung specialist hospital who it turned out due to Covid were not seeing any new referrals but that was not made clear to me and I was left to try chase things up myself. It’s as if I was just forgotten about!
Eventually after being pushed from one hospital to the next I had a lung biopsy and PET scan & it was confirmed I had a 4.5cm tumour on right lung.
To cut a long story short,it is a matastasis from head & neck and not a new primary as was first suggested. Also have another hot spot on nasopharyngeal wall & lymph node in the centre of my chest.
I had my first face to face meeting with the oncologist yesterday to tell me my options.
Do nothing, not an option for me or get on to a clinical trial. I was given the paper work on 2 immunotherapy trials to mull over. The side effects look horrendous! I need to decide in the coming days. Has anybody had this combo of ICOS study drug with Pembrolizumab? The other combo is Cemiplimab with ISA101b which I think is very new.
Thanks for any advice or info
little-fi x
Sorry little-fi I have no knowledge of either of these drugs, and actially no info on immunotherapy at all. Hope someone will be along soon with a more helpful reply; dreadful the delay though, I fear many cancer patients are being put "on hold" due to covid and the consequence could be very nearly as serious as the virus itself has been (and continues to be).
Can only wish you well.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Hi little-fi
So sorry it's taken so long to get an answer, you must have been frustrated angry and frightened beyond belief.
I do know a little about immunotherapy though I haven't had these drugs.
Pembrolizumab is already used for metastatic lung disease but the combination you mention is new.
The second one I had to look up.
Good luck with any decision you come to. There are reports of some spectacular responses
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I think you need to find out more from your oncologist. As far as I can see the second trial is double blind so neither you nor your team running the trial know whether you are getting both drugs or one and a placebo. You’re selected randomly.
let us know more when you do.
remember though about side effects. Not everybody gets all of them? Would coming off one trial preclude you joining the other?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
