Living with CLL

Cheers to your remission! I would have to say all that you mentioned are a go-to for starters and being mindful of what you've just experienced. I would have to say for me remission was a sigh of relief but it was not quite back to business. You learn the importance of moderation and learning and moving how your body wants you to move. Best 😀

, Agree, have to listen to your body, it knows best. It’s the daily meds, and constant fatigue…even still in remission. But it’s a new life style.

Hi welcome to our community!! I was diagnosed with CLL in 2015. Being an African American female under 40, I was an unusual case… statistically. I have since come to find that I’m not such a unicorn. It’s been eight years and my biggest battle for sure is FATIGUE!! It has affected me different ways over the years but it affects me nonetheless. I have learned to adjust to my diet (reluctantly lol). Due to the constant bone pain, exercise is a challenge, but staying active does help. So when I find the energy I do high intensity house work ( I know it sounds funny but in our position that can be the equivalent of a Zumba class! 😂😂). I walk, I am a dancer so I do movement when I’m able. My son is a Zumba instructor so occasionally I make it to one of his classes. Vitamin D is great for us!! Taking the pills are great, but get outside and get that natural Vitamin D!! The best time is right at noon if you can. I can feel the difference when I do! Mentally it’s been a battle at various times. I tried to fight all on my own and internalize. It wasn’t good for me and I don’t advise it at all. I have found so much strength and healing in community and communicating.. find your tribe! Talk to those who love you, those who understand you and those who desire to be a help & support. Also there is no shame in therapy. My therapist has been a blessing to me. I hope I have been encouraging in some way. Please continue to reach out. We are here for you. (Leya Elijah - Team Member)

I've been fighting CLL/SLL for almost five years now. For the first two years, I was taking ibrutinib, but then, my body couldn't take it anymore, and I started having severe body pain, which made anything more challenging. Fast forward a year, and due to COVID, my body triggered a relapse in my cancer. This time, I chose only oral chemotherapy through taking acalabrutinib or Calquence because of how my body had reacted to the imbruvica. I've been on the Calquence now for over a year, and my blood counts are back under control again. It's easy to forget that my body is still immuno-compromised, even though all my numbers are currently good. I recently traveled to Kenya for a short-term missions trip, and everything was good until the return flight. I contracted a virus I've never heard of before, human metapneumovirus, and it attacked me HARD! My body fought for almost five weeks before it finally seems to have left my body for good. I'm back to running nearly 25-30 miles/week, and I feel pretty good most of the time. I did have a brief scare when both my wife and daughter were diagnosed with COVID. So far, I'm testing negative, but I know that with CLL, my body is not as able to fight off viruses like most people. So, I continue to try to live my best life, and yet, I also live with the knowledge that CLL can rear its ugly head at any time.