I had a great follow up January 8, 2019 in Houston with my MD Anderson care team.
Since my last visit and blog post (June 2018) things have been pretty uneventful (a good thing!) with my CLL. I only had one hiccup in December that scared us.
In early December, I had LASIK eye surgery. I had to hold my Imbruvica (CLL treatment meds) for 7 days total. 3 days after my LASIK surgery, I woke up at 3:00am with very painful, very swollen lymph nodes all over: my neck, collarbone, underarms, groin, etc. You could visibly see them protruding off of my body. I woke my husband up next to me so very scared. CLL nodes have never swollen that quickly nor have they been painful. I talked with my primary care doctor and my oncology team in Houston many times over the course of a week following this. Blood work appeared normal. Mono tests were negative. But the Epstein Bar Virus (EBV) labs came back VERY high. I had no idea what this was, but have since learned very much—that about 90% of adults have been exposed to this virus at some point in their life. It’s mostly dormant, but in my case it was very much active. Stress can activate this virus. This is the virus that normally causes Mono, but my mono test was negative. Anyway, within a few days all the nodes went back to normal and the pain diminished. I began a daily anti-viral medication to hopefully keep EBV controlled. I also am seeing an infectious disease specialist next week for further recommendations, if any.
So January 8 in Houston, my labs were great CLL-wise! Dr. Burger wants me to continue the 280mg dose of Imbruvica. Last June he mentioned possibly doing a smaller dose or completely stopping it for a bit. However, he stated that they are not seeing that the lower dose of 140mg is keeping CLL controlled in most subjects. And as far as stopping it altogether, he said he is seeing CLL symptoms come back quickly and more aggressively. Along with those 2 factors + the EBV episode, he wants me to continue the current regimen. Um, yes please! I concur!
Thank you to my dear friend, Whitney, for joining me on my visit. We had a great time in Houston celebrating my great report. I go back to Houston in August for my next follow up.
Thank you for the love and support. And yes, I now see 20/20!
xoxo~Heidi
