Ask the RN Question:
My new hematologist wants to start me on Ibrutinib. I asked him for the IGHV mutation and TP 53 test, and he responded those are not required before taking Ibrutinib. My understanding is that it is best to get those tests done before any treatment, as it can predict your results from another form of treatment, if required later. Should I keep trying to push him for the tests, or have my general practitioner order them? I don’t want to make a mistake and start Ibrutinib before the tests if they are important for the future. I am waiting to start taking the Ibrutinib until I can get this answered.
Answer: Yes, you absolutely should have testing performed before receiving any treatment for CLL. As you probably already know, we have an entire section on our website dedicated to our “Test Before Treat” campaign that can be found here. We would suggest either sharing the link to our website with your hematologist or print out this one-pager to give to them that explains why it is crucial:
The bottom line is that the current National Comprehensive Cancer Network guidelines indicate that it is critical for CLL patients to receive testing both before the first, and before every subsequent therapy. It would be disappointing for you to have to go around your hematologist to receive the appropriate testing, but that decision is up to you. We have had many other CLL patients share with us that finding a CLL expert in Hawaii has been a real challenge.
This would not provide you with an immediate solution, but you might also consider applying for our free Expert Access Program. It takes about 30-days to gather all of your medical records for the physician to review, but it would allow a CLL expert to have eyes on your particular situation and then provide you with a 30-minute HIPAA compliant online visit where they will answer questions and then follow-up by providing a written recommendation/notes to take to your local treating doctor. A diagnosis of CLL and USA residency are the only requirements for this free program we offer. Here is the link if you would ever like to apply:
Stay strong. We are all in this together.