CLL - Symptoms at Stage 0

Hi @sue58 Thank you for sharing your husband's story. I was hoping to get in ten years of wait and watch but it looks like that won't happen. I am very happy to hear that eventually the correct meds for him worked, but yes how unfortunate to have to deal with the tick bite. My wbc is at 119 and lymphocyte count almost matches that. There is definitely lots of hope for people with cll. I asked about entering a trial, but unfortunately there were not enough people in my area in the same category as me, although the doctor said she may be able to take a second look at it. I am torn anyway about limping along the way I am or starting treatment because of the numerous possible side effects. What kind of side effects did your husband have on Imbruvica? I will have to look into Venclexta.

They use an anti malarial/parasitic drug - Atovaquone , because it’s a parasite not a bacteria. It eats your red blood cells, not what a leukemia patient needs.🥴 He had to have three transfusions. I think we live in the tick capital of the world.

He had gout, which he had never had before, with the Imbruvica, in his foot, elbow and hand. I’m not sure if that’s very common. I did feel like if there was a side effect to be had he got it over the course of a year and a half, but he has heart issues as well so that didn’t help. I’m very glad he persevered through treatments. We learned a lot. There are ways to manage side effects, and I’m so pleased that the Venclexta hasn’t bothered him. Cancer treatment has come a long way. At the office they didn’t want to expound on any side effects because everyone is different, but I felt like a little more education would’ve been helpful. Even a small thing like drinking lots and lots of water helps treatment. I could go on and on🙂

Hi @marytheresacll! I know you’re always so positive and trying not to worry about your health. This new change in your CLL status has you a little concerned, I’m sure. But outside of needing to start a treatment plan, this may not impact your life any more than it does now. You may have had this for many years before even being diagnosed.

The survival rate for CLL is better than for many other types of cancer and that isn’t including statistics with treatment. This is still a blood cancer that develops slowly and is generally managed with medications or targeted therapies. So even though there are changes taking place, your doctor has time to make the decisions about your treatment.

The doctor mentioned starting your treatment with one of the more common meds for CLL, Acalabrutinib (Calquence), which has been shown to be beneficial in treating CLL, even patients with variants. Seeing that you’ve not been receiving any treatment to this point, you may actually start experiencing fewer symptoms once you start taking the meds! I saw this happen with a neighbor a few years ago. He’d had CLL for about 10 years but I could tell he was getting less robust in his health. He started taking Calquence, and wow, he’s like a new man. He and his wife have 5 kids, he runs, bikes, works full time. You’d never know he has CLL.
I’d hate to have you give up pickle ball, walking and dancing! I go stir crazy when I can’t get out to walk daily. I think those daily activities that keep the blood flowing are so important to our health and well-being.

I want to learn to play pickleball but most of the people down here where we spend our winters are not appreciative of newbies… haha I don’t want to be pummeled like the geeky kid in dodgeball! Remember the old outdoor recess days at school? 😂

Hi @marytheresacll It’s been a couple of months since we spoke last. I think you were just beginning treatment with Acalabrutinib (Calquence) for your CLL. How are you feeling?