When I was first diagnosed in April 2018, my WBC was at 55k, my local Hematologist performed the FISH test and found out I had 11Q with loss of ATM, they told me that only made a difference in the type of treatment I would need and I probably did not need to worry about treatment for a while. They said I was welcome to go for a second opinion with a CLL specialist if I wanted to, but they made it seem not too bad, so I decided to wait. I had just been to more Doctors appointments than normal in a matter of a few months and the thought of more was not appealing to me.
I was tested every three to four months and in August my WBC only went up a little bit to 64k, but come December 2018 it jumped to 127k. Which is when I decided it was time to visit a CLL specialist. I went to Dr. Furman in NYC in January 2019 and he did full blood work (18 vials). In February 2019 I had a big scare with Influenza A that landed me in ICU on a respirator for a few days. I had to wait to recover to visit Dr. Furman again at the end of March. Where he informed me that I also had NOTCH1 and was at a risk of Richter’s Transformation. He recommended it would be best to start Acalibrutinib as soon as possible. I started on April 24th and have had a great response and all my blood counts are back to normal range.
I would highly recommend to anyone newly diagnosed to see a CLL specialist asap, even if you are sick of too many Doctor visits. Just to be sure they do not have any High-risk features that may require treatment sooner. Thankfully I did go when I did, but in hindsight I should have gone sooner myself. You live and learn and I hope I can help others Learn how important it is to see a CLL Specialist sooner than later.
Sincerely,
Michelle
