My 5-Year Anniversary on ibrutinib (IMBRUVICA)

My gift to Dr. Adrian Wiestner

Pharmacyclics had a cancer run

and used a copy of my painting on the back of the t-shirts.

NIH does medicine the way it is supposed to be done. It is patient-centered. I am happy to report that I feel as good as I did before I was diagnosed with cancer in 2009, except a little older. LOL. That is why I have decided to accept Arizona State University’s offer as a Clinical Professor. I will work with graduate students and seniors. I have missed them. I asked for part-time, because I have so many other things in my life to do.

My reported side effects:

No fatigue the past six months (other than age related).

No muscle cramping the past six months (after 4 ½ years).

Knee inflammation improving. I am cycling, stretching, and doing light resistance training. Sitting for more than one hour is not good for my knees. I have osteoarthritis. I need to stand and stretch periodically or I will pay for it.

My nails are still brittle. This is the last side effect left. I think I can live with it.

Every time I visit NIH for my medical tests, I learn something new. My blood brother George St. Claire and I were discussing auditing an intro to genetics class to help us better understand what is going on with our bodies. I call George my blood brother because we met each other as we were being wheeled into surgery on our gurneys, while his brother and my husband Carl looked on.

This visit I was honored to spend with Adrian Wiestner, M.D., Ph.D. He is not only a brilliant researcher, but a fine human being as well. Dr. Wiestner graduated from the University of Basel, Switzerland. He is a world-known, well-published medical researcher and the Senior Investigator in the Laboratory of Lymphoid Malignancies in NIH.

This time at NIH I learned:

• Normal B-cells do not come back in the normal range when a patient is on imbruvica. They do not

mature enough in the bone marrow. The body then produces more T-cells to help combat infections. I found this out when I asked about the B-cell low range (2) on the CD19# which is supposed to range (61-321/uL).

• Stopping the kinase inhibitor

Dr. Adrian Wiestner says that he does not believe patients on ibrutinib alone can have a durable lengthy remission when taken off ibrutinib.

As I mentioned in previous posts, select patients taking ibrutinib and venetoclax are minimal residual disease (MRD) negative and have been taken off the drugs. How long the remission lasts remains to be seen.

Three things may happen if a patient stops the drug after a complete remission is attained:

1.    CLL progresses

2.    Complete remission remains

3.    Normal B-cells grow back (This remains to be verified)

Researchers are studying Chronic Myeloid Leukemia (CML) patients taking gleevac who stop taking the drug. About half who have stopped have continued with a durable complete remission (http://www.cmladvocates.net/3-news/newsflash/726-update-on-stopping-cml-treatment-with-tkis-in-deep-molecular-response).

• Blood test

Dr. Wiestner is happy about my immunoglobin (lg) numbers. These are blood antibodies that help fight infections. They are within the normal range.

My WBC is 8.93 and my absolute lymphocyte number is 1.54 – all good.

My uric acid is slightly above normal but of no concern. I do not eat beef, nor have I ever had gout. He said I may be eating too many beans, but keep eating them. LOL.

• Surgery when on ibrutinib

I am having a cyst excision (ellipse) in my lower back at the end of this month. Because it involves sutures, I will have to discontinue ibrutinib for seven days before the procedure, on the day of, and seven days after the procedure (for a total of 15 days) to avoid internal bleeding. If you are having dental work done, which involves incisions, you need to contact your specialist for instructions on stopping the drug.

• When does a mutated copy of TP53 happen?

A mutated copy of TP53 happens when a cell divides during DNA replication.

NOTE: One way that the TP53 gene protects against cancer is by causing cells with damaged DNA (which is likely to contain cancer-causing mutations) to commit suicide, via a process known as apoptosis.

• To confirm a complete remission

It takes three tests to confirm a complete remission for the clinical trial:

Blood test: CHECK

CT scan: CHECK

Bone marrow biopsy: 2 years ago

My last bone marrow biopsy confirmed a complete remission response; however, I may be asked to have another BMB in October or January to verify the CR.

• Canadian Health Care

I had the lovely opportunity to meet with a 39-year old cancer patient from Canada. We discussed the healthcare systems in our countries. She said that health care is free in Canada. If you have a minor ailment like the flu, a cold, etc. it is great. If you need a specialist, you are in trouble. She was diagnosed with a cancer with a six-week survival. Her appointment to see a specialist in Canada was in six months. That is why she ended up in a clinical trial at NIH.

Take care. Be grateful. Be kind. I wake up every morning and count my blessings.