How You Doin'?

I have received a number of inquiries about how I am doing, and if everything is going OK.  I am pleased to say that I went to my 16 month checkup last month and everything seems to be going in the right direction.  Even though my blood numbers are still not in normal range, they continue to move down towards that goal.  The thing about Imbruvica, is that it is a very slow acting drug, so you will not see the same dramatic drops you see in chemotherapy.  I still have minimal side effects of joint/bone pain, but these have lessened since I started over a year ago. 
 
My main problem these days is trying to get over pneumonia.  In December and January I got 2 colds, and then in the beginning of February I was diagnosed with pneumonia.  I went thru 2 separate rounds of antibiotics with only minimal effects.  The problem with a compromised immune system is that you don't fight off infections very well, and it takes a while to get over them.  My main problem has been a constant cough.  I never had a fever, and my cough wasn't very productive.  I was actually diagnosed via an x-ray, and the area they identified has only gotten slightly smaller over 2 months.  My primary doctor is puzzled and wants me to see a pulmonologist and get a CT Scan.  He even suggested the cough might be due to Acid Reflux.  I had even tried to find out if there are any correlations between my current trial drug, Imbruvica, and any of the symptoms I am having.  Of course there are anecdotal references to 'lung issues, coughs, sinus issues, acid reflux, breathing, walking, talking and eating.'  So there is no real validated connection.  It would be a shame if the drug were causing this after 16 months of success. My trial doctors don't think so, but who knows.

After the suggestion to see a pulmonologist, Donna mentioned she remembered another CT done at UCSD in 2010 that identified a spot on my lung.  So I dug thru my 3 volume set of medical tests and reports and sure enough I found a CT from 2010 that identified an area in my right lung that is in the same area as what the x-rays showed.  Because I was going on a clinical trial in 2010 I had to have a lung biopsy to determine if it was anything more serious and something that might keep me out of the trial.  The biopsy came back as 'unknown, possibly scaring from Valley Fever or previous lung infection'.  So, if this is the same area that existed in 2010, it is a non issue.  So I try to make an appointment with the pulmonologist to have him weigh in on whether I REALLY need another CT scan or not.  The next available appointment for a NEW patient is MAY 22nd.  What the heck?  6 WEEKS from now? 

You would think that after all I have gone thru, this would be expected or at least well tolerated.  NOT SO.  I am so frustrated to think that I can't even get in to see a doctor for over a month, when it may be something I need them to weigh in on now.  The only good thing is that the cough seems to be getting a little better this week, so maybe I am on the mend. So since I am finally getting better, I'm going to put off going to see the pulmonologist for now.

I am still going down to UCSD monthly for my Immunoglobulin infusions.  I don't know if it was bad timing or the fact that when I changed my infusions to every 6 weeks instead of 4 weeks, I got sick.  Since I have getting IVIG monthly for 7 years and never really have gotten sick, there may be a correlation since the half life (the length of time a drug remains in your system) of IVIG is 4 weeks. I'm now back to every 4 weeks.

Speaking of lung issues, my lifelong friend Tall Tom, is currently at UCLA Medical Center waiting for a double lung transplant.  They have told him that it should be within the next two weeks, but so far there has been no match.  Please keep him in your thoughts and prayers and that the transplant goes well for him.

On another note, I am fortunate to have become a part of a new CLL Patient Advocacy Group called the CLL Society.  I am on the patient advisory board of this non-profit group founded by my friend and fellow CLL patient Dr. Brian Koffman.  Brian has had a blog for years where he tried to mix CLL information with his own personal CLL journey.  After a while it became apparent that there was a growing need for unbiased, factual, and current information about CLL so he decided to separate the two.  There is a need for up to date information not only about the disease, but also approved treatments, clinical trials and new and evolving therapies. The website addresses the most basic information, more detailed information, how to interpret test results and how to go about building your 'team'.  The webpage was just released last week, and if you click on the link above you will be one of the first ones to see the great job he has done.  The link you would access on your computer is fully functional, and the mobile website is still being tweaked.  It is not only for patients but caregivers as well, as you can see if you click on the 'Welcome Video'.  So as a result of this effort, Donna and I will be a part panel discussion at a Leukemia and Lymphoma meeting in La Jolla later this month where we both will be discussing 'the journey of a long time patient and care giver'. 

We are leaving next week for a week in Montana visiting Sarah and Kevin.  I plan on getting back into fly fishing on the banks of the Yellowstone and Madison rivers no less.

Hoping to land the big one...

Terry