Happy Easter everyone!
So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL?
We started V at the end of Feb. 2017 (as I posted our experience back in Feb/March) the introduction was scary and our toughest challenge yet. 2 months later, my husband has certainly tolerated V and showing great signs of improvement everyday - however we know this is temporary. Mark's CLL Is very aggressive and we were 1st hand witnesses to its power. The biggest lesson that came out of our last relapse was how quick this disease can progress. We started failing on ibrutinib in Nov. 2016 and by Feb. 2017 the progression was like watching Usain Bolt running the 100m in Rio - moving at its own pace and leaving everything and everyone behind.
So what next?? Mark always states he views his CLL as a chess game and he likes to be 2 moves ahead of his opponent - but at this point there really is only 1 move left Stem Cell (which we find terrifying) or CART-T (which has really made huge strides since we 1st read about it in 2011). Our health professionals are all guiding us on the Stem Cell route where we are thinking we need to explore CAR-T but every time we mention CAR-T the response is very negative and I feel like it is a "dirty word". We live in Canada were there has not been a lot of research/progress on CAR-T.
My question is what would you do and can this great CLL family offer their insight and knowledge to assist us in our next chess move???