It is no fun to travel on Thanksgiving weekend across the country to OSU, spending hours in busy airports full of long lines of irritable flyers, but I am know that I am one lucky patient and I am grateful for my good care and my good drugs, even if it means crossing 3 time zones and leaving sunny beachy California for cold and wet Columbus, Ohio.
When I started on my ibrutinib trial two and half years ago there was a definite buzz about this new oral med that might change everything.
Well the game has changed, or more accurately is changing, and it is only going to get better with new non-chemo combos and second and third generation kinase inhibitors and monoclonal antibodies (mAbs) offering us more and more options.
We aren't there yet, but we are moving fast (but not fast enough for those of us who need answers now) in the direction of long term disease control. Cure is still elusive, but there it is now an active area of research.
I am an example of the early changes.
Before ibrutinib and idelalisib and ABT-199 and now the second generation kinase inhibitors and the new mAbs came along in trials, someone like me with a failed transplant and a clone of 17p deleted bad boys had fewer choices than a vegan at a Texas BBQ stand.
Now 30 months into my ibrutinib adventure, I have a boringly healthy blood chemistry, and a mundane CBC (complete blood count) with a normal numbers of my red blood cells, my neutrophils, my platelets, and an absolute lymphocyte count of only 1.04
If you dig deep enough with PCR or sensitive flow cytometry, I suspect my cancerous clone is still lurking in <1 ago="" are="" as="" b="" but="" cells="" it="" months="" my="" of="" p="" pretty="" results.="" spectacular="" these="" three="" was="">
As I said much to happy about it. And many reasons to give thanks.
Now with my personal good results locked in for another three months until I return for my next OSU clinic visit, I am off to ASH 2014 to bring the broader good news and to push the CLL researchers and pharmaceutical industry no to take their foot off the gas until we have a cure for us all.
Life is good.If you want a personal response, or just want to stay in touch, please email me at bkoffmanMD@gmail.com. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together.