Good News from OSU About my CLL ( Chronic Lymphocytic Leukemia)
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 is now an active area of research on curing CLL, sometime inconceivable a few years back.
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 the less that one percent of my B cells that still carried the signs of being part of the nasty cancerous clone gang when checked three months ago at OSU.
But 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.
Let me know if you have any burning questions for the researchers at ASH.
Life is good.
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 is now an active area of research on curing CLL, sometime inconceivable a few years back.
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 the less that one percent of my B cells that still carried the signs of being part of the nasty cancerous clone gang when checked three months ago at OSU.
But 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.
Let me know if you have any burning questions for the researchers at ASH.
Life is good.
Labels: ASH 2014, Chronic lymphocytic leukemia, Clinical Trial, Clinical Trial NCT01217749, CLL, Cure, good news, ibrutinib, lab results, OSU
posted by Brian Koffman at
11:47 PM
4 Comments:
Brian -
First, thank you for a great blog that is rich with information. I check for updates almost daily to get another pearl that gives me hope for the future.
As you have said repeatedly, let's not get stranded on third base. In this context, there are many of us who are treatment naive yet have CLL that is slowly progressing. At some point, we will need treatment and FCR/BR and all that entails seems only to set the stage for more problems down the line (ie: Richtor's syndrome, etc.).
When do you think Ibrutinib, Idelalisib, and ABT-199 will hit the front line for those of us that are not R/R?
Fantastic news! I appreciate all you do to keep us informed and look forward to more great news from ASH!
Life is good and it should be for such a great guy. Enjoy the moment and many more.
Jeff
News programmes have suddenly become hot property and are vying for attention with other popular programmes telecast in different channels.
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