An update

Hi

The timings also provide a bit more clarity.

In 2017 the new Met was identified in early Oct, removed mid October but i didn't have clear margins so i had another surgery on the 22nd November.  This was my 12 week date to enter the Checkmate 915 trial (mistakenly said 095 trial earlier!!) which I started my first dose in early February 2018.  It was a blind trial but I later found out i was receiving Ipi & Nivo but only 6 weeks into the trial the new mets were identified.  The met in the scar tissue was assumed to be just scar tissue and the one on the chest was misdiagnosed as an ingrown hair as it was very unusual in appearance and looked very similar to a spot.

With only 6 weeks on the Ipi / Nivo it didn't have time to start dealing with the mets before they were identified and i was taken off the trial.  I was then moved to the increased dose (normal for Stage 4 patients) with only a 3 week break between treatements.  I believe under Checkmate 915 I was on 1mg/kg for both Ipi & Nivo and then moved to the normal (my Docs call it the metatastic dose) of 1mg/kg of Nivo and 3mg/kg of Ipi of which i had 2 doses before my side effects kicked in. 

The doctors were questioning whether to give me the 3rd dose of Ipi/Nivo as they were getting concerned over how much Ipi I was being given and the side effects confirmed I had had enough Ipi!!

Hope this clarifies but happy to provide more info if it helps anyone else

Hi Mark

The view seems to be that I am responding to the treatment and there is a view from my team that once you start to respond there is a good chance you no longer need the treatment.  They have evidently had a number of patients in my position that have gone on to either be a complete responder or maintain stable disease at a reduced level.  Apparently one patient only had one dose of Ipi/Nivo had severe reactions and became a complete responder.

In addition they would like to hold back the Nivo in case I progress later and then I still have it in reserve to use.  Essentially while my immune system is doing the work leave it be.  Only time will tell, but I will keep the boarded posted of progress for others information

Regards

Mark

Hi

Yes I was unblinded after coming off the trial that identified I was in the Ipi/Nivo arm. 

Unfortunately as I had active disease I was no longer eligible for the trial, but they moved me straight to the 'Stage IV' dosing to continue.  So as much as it was a bit of tough ride I was buoyed by the fact I would be getting a stronger dose.  In total I had 4 doses of Ipi / Nivo although two were at the lower dose of Ipi.

I think that because I hadn't been on Ipi/Nivo for very long (6 weeks) and as my arm was very warm they felt I might be starting to respond.  In fact I did have some pseudoprogression at my 3 month scan and I could feel the met in my arm was larger (very stressful) but then things changed and I felt it was getting smaller which has now been confirmed.  The really stressful bit is that I can feel the met (4cm at its biggest) in my arm every day and struggle not to become fixated, prodding it which it reacts to and gets bigger and then I get even more stressed!!

Its a tough battle, but we all have our challenges to get though!!

Thanks for your kind words Beth – in all honesty it wasn't too bad when I read others ordeals such as MelanomaMike who has really been throough it.

While my Liver numbers peaked at 440 (10times normal) I had no symptoms; although the pituitary gland issues were fairly unpleasant for about 2 weeks before i was admitted to hospital and it's now inactive.  I would go through it again in a heartbeat if I had to make the decision again.

Cheers

Mark