My blog has veered far away from the simple telling of my story to more telling of our stories with much B roll.
I am making plans to maybe bifurcate its content in the future, but for now it will continue its happy and diverse life as a personal health blog, a home for research news and video and audio interviews with leading researchers, and a whole bunch of personal analysis and advocacy on what it all means.
I am back from Ohio State where I am still seeing the research team every 3 months and getting CT scans every six months for my clinical trial on ibrutinib. I have riffed on this being too much radiation before in this prior post
that includes links to some of the basic research of radiation exposure and its risks, but Dr. Byrd argues that the few relapses he sees on ibrutinib show up first in the nodes, so he wants to monitor me with the scans.
True enough. When I relapsed post failed hematopoeitic stem cell transplant in 2008, the nodes were my canary in the coal mine showing slight growth months before my lymphocyte counts started to move up and my platelets down.
So twice a year CTs are still the plot line for my clinical trial at OSU.
Since diagnosed in 2005, I have probably had about two dozen CT scans!
Add to that the equivalent of the 20 chest X-rays annually I get from flying over 100,000 miles a year,
and my risk of secondary cancer is significant. This link
with a NASA produced video tells the air travel part of the story.
If you really want to worry, take a look at this article
from Medscape on CT scans in NHL.
But this post is not about the danger of CT scans, but about what my last one showed and happily that was stable disease.
I still have enlarged lymph nodes but they have changed little since October of 2012, or for the last 20 of my total of 25 plus months on ibrutinib. My largest sentinel gut node near my liver was about 10 cm at its peak, 7.3 x 3.3 cm just before starting ibrutinib, 4.4 x 0.7 cm in October, 2012 after about 6 months on the medication, then it shrunk to its shortest 3.9 x 0.7 three months later and when last measured on June 30, 2014 was 4.4 x 0.4 which actually represents its lowest volume. It has been fluctuating and when you account for the difficulty of measuring mobile objects in the mesentery and near the liver, is mostly stable since its dramatic shrinking in the first 6 months of therapy. Its a long hot dog shaped node instead of the more common bean shape. The same early dramatic shrinking in the first six months and slight ups and downs since has been the tale for my other smaller sentinel nodes on the scans.
So I have pretty stable disease.
What does this mean to still have enlarged nodes and a touch of CLL in my blood (see this prior post
from last April on my flow cytometry report to understand more about my numbers and disease burden)?
The CLL does not proliferate in our blood, so the disease in our nodes and bone marrow are the source of all our problems and I will ignore the blood for now.
There is good reason to believe that these enlarged nodes are still full of CLL, but that it is not proliferating, thanks to the signal blocking from ibrutinib preventing it from getting the messages from its nurse like cells and others to be fruitful and multiply. So chock full of CLL, but it's dormant.
The other more positive interpretation is that these enlarged nodes are just the scarred down skeletons of the cancerous nodes they once were, and there is no residual disease to be found. Unfortunately, I am skeptical of this more PolyAnna hypothesis, and short of a biopsy which is not going to happen, there is not way to know for sure.
So what to do to avoid waking the Kraken
Hope my genomic instability as evidenced by my 17p and 11q deletions and my complex karyotype will continue to behave with the ibrutinib aboard and not mutate so that my magical bullet no longer covalently binds BTK and blocks its activity?
Knock down the residual disease by adding a second or even a third agent?
Be reactive or proactive?
That is the question du jour faced by many of us now and more in the future whose CLL is controlled but it is not gone now with the new medications such as ibrutinib and idelalisib.
I have probed this recurring and unanswered question in more detail a prior post
, and will soon be updating my thoughts on how to avoid being left stranded on third base and not getting home to a cure.
The rest of my news is also good.
My blood counts are boring and despite dropping my cyclosporin to a token dose of only 25 mgs once a day and stretching my 40 grams of IVIG infusions to every 7-8 weeks, my ITP also remains dormant. I think the possible immune stabilizing activity of ibrutinib and my low disease burden may be the factors that have given me this long ride with high normal platelet counts. I have not been anemic for many months now and my neutrophils and the rest of the CBC are all copasetic. My blood chemistries are in the normal range and only my very low immunoglobulins, namely IGA, IGM, and IGG give proof to that fact that I still have a B cell leukemia, albeit a very sleepy and well behaved one.
More personal clinical and general CLL news soon, nearly all of it good.
I will be posting some of my interviews from ASCO 2014, plus sharing some exciting advocacy news. Busy times.
Labels: 11q del, 17p deletion, Chronic lymphocytic leukemia, Clinical Trial, Clinical Trial NCT01217749, CLL, CT results, CT scan, cyclosporin, Dr. Byrd, good news, ibrutinib, ITP, lymph nodes, Radiation, third base