I had my bloodwork and follow up visit at MD Anderson Tuesday, December 5. I was so fortunate to have my dear friend, Tracy, join me. She sat with me during two days of chemo in the beginning, and she’s been an indispensable mentor, doctor, and friend since day one.
I’ve been feeling amazing, so I was hoping this visit would go well. But you never know....
The only side effects of the Imbruvica I deal with daily are EXTREME thirst/dry mouth [I drink more water daily, and all thru the night, than I ever thought was possible] and bothersome and constant acne [hello preteen years!]. Disclaimer: these are definitely minor considering the entire situation, so I will deal, and I will be fine!
While I’ve seen my dermatologist about topicals and/or oral meds to help, she wasn’t comfortable prescribing anything (other than a topical) until I clear it with my MD Anderson team. Upon my visit Dr. Burger said that instead of adding more meds, he recommended that we decrease my Imbruvica dose (which is at the highest) to a lower dose. Naturally this freaked me out - thinking my lymph nodes would immediately swell and CLL would again become aggressive - but he assured me he did not think this would happen.
Imbruvica works by blocking an enzyme called Bruton’s tyrosine kinase (Btk), which is found in B lymphocytes [read: BAD lymphocytes]. Btk promotes survival of B lymphocytes and their migration to the organs where these cells normally divide. Dr. Burger said after ~6 months on Imbruvica, I probably have very little Btk in my bloodstream, so decreasing the amount of medication should be sufficient. He was actually quite confident in this. And he’s a genius, so I will trust him.
I have now decreased my dosage, and I will watch for any changes that may show aggressive disease and/or any less side effects. Obviously, I hope for the latter. If all goes well, I will not go back to MD Anderson for 6 months.
Thank you, as always, for supporting me and loving me. If you are reading this, have a newly diagnosed cancer, and are debating a second opinion, please think on it no more. This second opinion, at a world-renowned cancer research center, has changed my life. No more unnecessary chemo, yet I have gained an amazing NON-chemo drug that is keeping my CLL controlled. We are very hopeful it will continue to do this for years and years.
🍷Cheers to continued CONTROL!🍷
[Dr. Burger below, with his favorite patient 😉]
