Stuck on Third Base

Dr. Brian Koffman refers to the current state of CLL/SLL medical research as being “stuck on third base” – almost there, but no home run yet. He is so right. A cure is around the corner and all of us patients are hopeful that it comes during our lifetime.

The last month has been very stressful for me. I have been fighting a respiratory infection and was off ibrutinib until I could get several heart tests and the results. Remember that a patient died in the trial because his heart stopped working. My NIH doctors wanted to be safe with me, since I had reported heart fluttering. If my heart is healthy, I will go back on the drug. If not, I will be on a Plan B – finding another clinical trial to help my leukemia.

My tests and appointments were scheduled. My last heart appointment had been moved from November 10^th to November 7^th. The most frustrating part was trying to move the tests and appointments up so that I would not be off the drug too long.

Then last Thursday I was contacted by NIH only to find that the clinical protocol had changed and that the drug company did not want any participants to be off the drug more than 28 days or they would be off the ibrutinib clinical trial. November 4^th was my D-Day. I spent several hours on the phone talking to the scheduling desk, the GP scheduler, the cardiology scheduler, etc. and leaving email messages with cardiologists, administrative assistants, etc. I was willing to cancel my existing appointments and go to ANY doctor at ANY facility in the Valley as long as I could get the results by the deadline.

Finally, an appointment opened up for today – a day after my ECHO test and two days after my Holter Test. I was told by the scheduling desk that this day may not work since the analysis is done one to two-weeks after the tests. I put on my Dragon Lady hat and told the scheduler that this appointment will have to work, and the cardiologist will need to take only one day to review the results, and please plug my name in the slot. I then contacted the doctor’s administrative assistant and explained my dilemma. She said the doctor would be able to read the test in one day.

When I saw the technicians for the heart tests, I got their names and asked them to please make sure the doctor had the results by Wednesday evening, and that I would be calling if there was a problem. I thanked them profusely for making this happen. They also checked the notes the doctor wrote and his notes indicated that I needed the appointments in one to two weeks. Apparently the schedulers were not following the doctor’s orders because they scheduled me almost a month out.

Long story short:

My heart is healthy. I thanked the cardiologist with the biggest smile on my face. He even got a hug.

I am now stuck on third base again with ibrutinib and I am so grateful.  Everything in life is a matter of perception. Third base is certainly better than being struck out.

I did not follow Tom Hanks advice in his 1992 movie “A League of Their Own”, “There’s no crying in baseball!” I shed a few tears of joy on my drive home.

As a patient, I am forever grateful for the gift of borrowed time I have received through the use of ibrutinib as my kinase inhibitor of choice.

-- Dr. La Verne

27 months on ibrutinib

I just returned from the National Institutes of Health in Bethesda, MD. This is a recap of what happened.

I started the day by donating 17 vials of blood and blowing out one of my veins to the causes of three clinical trials: (1) ibrutinib trial, (2) flu trial, which tests the effectiveness of the shot on immune-compromised individuals, and (3) the platelet trial.

I had a sore throat when I arrived. After my vitals I went to the building lobby to wait for my appointments. I began to read my book, but I was really tired and closed my eyes to rest for a few minutes -- one of my “power naps” as my son calls it. I woke up two hours later. Thank goodness I didn’t sleep through my appointments. NIH nurses put me in a separate room with a bed and swabbed my throat and tested my nose mucus. I was diagnosed with the rhino and terra (spelling?) viruses. I was told to continue to wash my hands and stay away from any grandchildren with runny noses to avoid having the respiratory infection become pneumonia.

These are the side effects I reported:

• Toenails are getting progressively more brittle and my right big toe nail is separating from the nail bed on the right corner. My little toenail on the right foot is excessively thick. NIH will be taking photos of my nail on the next visit, since brittle nails seem to be a common complaint of ibrutinib users. Boy do I need a pedicure!

• Loose bowels have been a side effect that has taken over two years for me to get. Apparently, it is not an uncommon side effect.

• Fatigue is still there, but not as bad as before I went on ibrutinib.

• Heart fluttering in the morning when I wake up (for the past 3-4 weeks).

Other issues:

• Sharp pain in my right side under my rib cage when I make a sudden move or twist my body. This has been going on since 2008. Everyone presumed it was a hernia, so I just put up with it. When it happens I have to give pressure with my fingers and do my Lamaze childbirth breathing until it goes away. I went to the GI doctor and he said it did not look like a hernia and I have to go back to get another test – either exploratory surgery with a camera or another MRI.

The results of my blood tests:

• Hemoglobin, liver, kidney, and LDH are within the normal readings. Hurrah!

• Platelet count is low. Not good.

• Neutrophil count is high (probably due to respiratory infection)

• Uric acid is high. It was requested that I get another test in Arizona to make sure NIH testing equipment is reading this correctly. If it is high again I will begin taking allopurinol. Here is a bit of trivia: It is not just rich foods that cause uric acid to rise. Did you know that cauliflower, peas, and spinach are high in uric acid? Maybe I have been overdosing in veggies! LOL.

• White blood count rose from 11,000 to 12,380. Not good. This is the first time in over two years that I have not been moving in the right direction. Dr. Farooqui thinks the rise in my white blood count may be because of my respiratory infection. We will know more later.

Here is the big news:

Sorry that I am not following newsroom protocol by keeping the big news for last. In the last blog I wrote about the trial letter indicating that a participant in the trial died suddenly when his heart stopped. Apparently his symptom was the fluttering of the heart. Since I have had that symptom, I have temporarily been taken off the drug. I had an EKG, which came back normal. I am headed to the doctor in Arizona this morning for an ECHO test and a Holter monitor test. Only when Dr. Farooqui gets the results will he determine when I can continue using ibrutinib. If not, we are on to Plan B. I am confident that these tests will come back okay and I can blame the heart palpitations on the other stressors in my life.