Good News: Personal Update on my CLL (chronic lymphocytic leukemia)
Sorry for my rare posting here.
The CLL Society has kept me way too busy, but I am trying to reestablish a balance between my posts here and there. Watch for interviews from ASH 2014 and more personal material here very soon.
My lab results tends to come in bunches- at St. Jude's, OSU and UCSD all in about a week due to a quirk in scheduling.
And all the bunches have all been good.
I am now over 37 months on ibrutinib and most of us trial guinea pigs who have done well this long, continue to do well.
There are exceptions and late resistance can develop, but it is still quite rare.
So here's the good news.
My lymphocytes flute a bit but remain just a bit above 1. That is great.
My Hgb is hovering in the low rage of normal, so no anemia again. It's been months since I have had anemia, so maybe that diagnosis is part of my past and not my future.
My platelets are a bit high consistent with my prior splenectomy and my very dormant nearly forgotten ITP still being well behaved. I have grown blasé about happy healthy platelet numbers. No more fear and trembling waiting for my blood counts.
When we look more deeply at my blood, using the flow cytometry we find that exactly 1.0% of my lymphocytes are monoclonal B cells or CLL cells. This is up from 0.8% 6 months earlier and down form 1.4% three months before that.
What that suggests is that my disease is stable. Statistically identical over the last 9 months.
I wish it was continuing to trend down slowly, but it probably isn't. But is not rising either.
So what does that mean?
Could this be the long bottom of a big bowl shaped curve that will start up again at some time?
Possibly, but since I lacked the common mutations (at least when tested 3 months ago) that lead to ibrutinib resistance that is unlikely. To rest easy, I want see this month's test for mutations in BTK-PLCG2 , but I am anticipating no clouds on the horizon.
Will I be one of those who has a long long time with a low low level of disease? I can live with that is the long is several decades and the low stays where it is.
My LDH was a touch high on one sample, but OK in another, so that's the one I believe. No reason for a high LDH, so I dismiss the out of normal one.
The rest of my blood chemistries remain boring and healthy. Well, my total protein was a big low again, because I make so little antibody.
No surprise that my immunoglobulins remain low except for the artificial elevation of my IGG from my infusions of IVIG every six or seven weeks. Not much leads to those rising back to normal even when our disease is well controlled. That persistent immune deficiency remains one of the biggest unmet needs of the CLL community in general and me in particular.
Got a another great piece of lab news, actually a big relief.
My PSA was low and steady after some wild bouncing around last year and giving me a short scare that I might have prostrate cancer, not unheard of in a man in his 60s, especially one with CLL. I am no longer worried with two low levels almost a year apart.
Both Drs. Kipps and Byrd found some small nodes (1 x1cm or less) in my neck and armpits, but no big change up or down for a long time now. My liver is staying small and my spleen has not grown back after being removed in a vain attempt to control my ITP years ago.
Before my next visit to OSU in 3 months, I must get imaging of my abdomen with an MRI (I have sworn off CT scans).
Right now, it is steady as she goes.
As I said before I do wish my levels were dropping, but there is so little experience this far out with ibrutinib, it is hard to get too worked up, and I am watched closely for any changes.
Plus there are great options out there for a post ibrutinib world, not that I am anticipating joining that small cohort any time soon.
So that's my story.
Off to iwCLL 2015 in Australia where I am speaking on panel with Drs. Keating and Roberts and others about the high cost of cancer meds. And running a small patient education meeting with Lymphoma Australia and interviewing many CLL researchers for the blog and the CLL Society website, and meeting CLL and lymphoma patients from Australia and New Zealand. Busy times, but I so look forward to it. And I will stay to play in Melbourne and Hobart for a week after with my wife and oldest son.
Life is good.
The CLL Society has kept me way too busy, but I am trying to reestablish a balance between my posts here and there. Watch for interviews from ASH 2014 and more personal material here very soon.
My lab results tends to come in bunches- at St. Jude's, OSU and UCSD all in about a week due to a quirk in scheduling.
And all the bunches have all been good.
I am now over 37 months on ibrutinib and most of us trial guinea pigs who have done well this long, continue to do well.
There are exceptions and late resistance can develop, but it is still quite rare.
So here's the good news.
My lymphocytes flute a bit but remain just a bit above 1. That is great.
My Hgb is hovering in the low rage of normal, so no anemia again. It's been months since I have had anemia, so maybe that diagnosis is part of my past and not my future.
My platelets are a bit high consistent with my prior splenectomy and my very dormant nearly forgotten ITP still being well behaved. I have grown blasé about happy healthy platelet numbers. No more fear and trembling waiting for my blood counts.
When we look more deeply at my blood, using the flow cytometry we find that exactly 1.0% of my lymphocytes are monoclonal B cells or CLL cells. This is up from 0.8% 6 months earlier and down form 1.4% three months before that.
What that suggests is that my disease is stable. Statistically identical over the last 9 months.
I wish it was continuing to trend down slowly, but it probably isn't. But is not rising either.
So what does that mean?
Could this be the long bottom of a big bowl shaped curve that will start up again at some time?
Possibly, but since I lacked the common mutations (at least when tested 3 months ago) that lead to ibrutinib resistance that is unlikely. To rest easy, I want see this month's test for mutations in BTK-PLCG2 , but I am anticipating no clouds on the horizon.
Will I be one of those who has a long long time with a low low level of disease? I can live with that is the long is several decades and the low stays where it is.
My LDH was a touch high on one sample, but OK in another, so that's the one I believe. No reason for a high LDH, so I dismiss the out of normal one.
The rest of my blood chemistries remain boring and healthy. Well, my total protein was a big low again, because I make so little antibody.
No surprise that my immunoglobulins remain low except for the artificial elevation of my IGG from my infusions of IVIG every six or seven weeks. Not much leads to those rising back to normal even when our disease is well controlled. That persistent immune deficiency remains one of the biggest unmet needs of the CLL community in general and me in particular.
Got a another great piece of lab news, actually a big relief.
My PSA was low and steady after some wild bouncing around last year and giving me a short scare that I might have prostrate cancer, not unheard of in a man in his 60s, especially one with CLL. I am no longer worried with two low levels almost a year apart.
Both Drs. Kipps and Byrd found some small nodes (1 x1cm or less) in my neck and armpits, but no big change up or down for a long time now. My liver is staying small and my spleen has not grown back after being removed in a vain attempt to control my ITP years ago.
Before my next visit to OSU in 3 months, I must get imaging of my abdomen with an MRI (I have sworn off CT scans).
Right now, it is steady as she goes.
As I said before I do wish my levels were dropping, but there is so little experience this far out with ibrutinib, it is hard to get too worked up, and I am watched closely for any changes.
Plus there are great options out there for a post ibrutinib world, not that I am anticipating joining that small cohort any time soon.
So that's my story.
Off to iwCLL 2015 in Australia where I am speaking on panel with Drs. Keating and Roberts and others about the high cost of cancer meds. And running a small patient education meeting with Lymphoma Australia and interviewing many CLL researchers for the blog and the CLL Society website, and meeting CLL and lymphoma patients from Australia and New Zealand. Busy times, but I so look forward to it. And I will stay to play in Melbourne and Hobart for a week after with my wife and oldest son.
Life is good.
Labels: Chronic lymphocytic leukemia, CLL, good news, iwCLL 2015, lab results
posted by Brian Koffman at
3:41 PM
9 Comments:
Such great news Brian.
Now you just need to get out and walk the neighborhood a bit
So good to hear you are doing so well. It gives hope to everyone that CLL can be "managed". Personally I used to think it was a dream that some miracle drugs might be found in our lifetime- but Ibrutinib appears to be one of those drugs. Stay well Dr Brian and yes.... life is good!
What a wondrous report. You and I lucked out, with getting CLL at a time when the new treatments were beginning to percolate. You are such a good man on the planet. So glad you will be hanging around for awhile to spread your incredible gifts around. So honored to be your friend.
Wonderful news. Enjoy your time in Australia. We love it there.
Very pleased to hear your good news, Brian. You do so much for the patient community - thank you very much.
Good news! It's nice when labs make you feel like Christmas and a lottery winner all at once. Maybe you could touch on those "common mutations that lead to ibrutinib resistance" in a future post. Thanks for all the great info.
That's great! And with the best CLL docs seeing you, you are blessed.
I write with tears in my eyes - my wife was recently diagnosed with CLL, stage 0. I feel very lucky to have found this wonderful site - and YOU! thank you!
I'm so glad things are going well. Keep us updated when you can.
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