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CAGquilt
Chronic Lymphocytic Leukemia Discussion • May 22, 2025
My Calquence Experience: 8 Months & Feeling Better
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Hello - my name is Chris and I was diagnosed in 2020 during the pandemic after my mammogram showed enlarged lymph nodes. I went through 4 years of watch and wait with exhaustion being the reason I could not continue to work. Last August my numbers jumped and I started on acalabrutinib (Calquence) 2 times a day. I also took Acyclovir and Dapsone to prevent shingles and pneumonia. After starting I found out I have a hereditary issue and cannot take Dapsone and Acyclovir caused so much nausea and upset stomach I have since stopped them. Eight months later I feel we have the right dosage and the right over-the-counter and medications to assist in some of the side effects and I hope to be able to continue Calquence for years like other people. I still have nausea occasionally and I take Move Free for joint aches. I am also taking Folic Acid. It took 8 months but I'm feeling better and happy we have drugs like Calquence to help! Good luck to everyone! These communities are great!
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Dalton
Chronic Lymphocytic Leukemia Discussion • May 22, 2025
Introducing HealthTree's CLL Community Support
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Hi everyone, I wanted to introduce myself here. My name is Dalton, and I am the Patient Engagement Manager for CLL at HealthTree. I coordinate and host the educational webinars for our CLL community and work on ways to figure out how HealthTree can better fit the needs of those living with CLL. Please feel free to reach out to me whenever! I love talking with members of this community and finding ways to help.
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Armando
Chronic Lymphocytic Leukemia Discussion • May 19, 2025
New to CLL: Thoughts on Diet and Fasting?
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hello everyone, I recently got diagnosed with CLL. I’m new to all this and it’s a little scary. I have a lot of questions.. I recently did a 21 day water fast, hoping it would help boost my immune system and I switched over. I’m currently living on a plant-based diet.. Any feedback or information is totally welcome.
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Lola2001
Chronic Lymphocytic Leukemia Discussion • May 14, 2025
Sharing My Watch and Wait Journey
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I am 74 years old and was diagnosed with CLL about a year and a half ago. At the moment, I am in the test and watch phase.
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rodrigo
Chronic Lymphocytic Leukemia Discussion • May 14, 2025
Trying IV Vitamin C: Any Experiences?
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There are many alternatives to traditional western treatments that I have read about, none of which seem to provide real solutions. The best one can do is stay as healthy as possible, as happy as possible, and as optimistic as possible. I'm now trying our intravenous Vit C. Has anyone tried this?
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MHolden
Chronic Lymphocytic Leukemia Discussion • May 14, 2025
Managing Calquence Headaches: Tips?
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Hey y'all! This is my first post on this platform. I'm 41 YO with High Risk CLL with complex karyotype, specifically the dreaded TP53 mutation. Sound effects Dun dunn duuun. My husband,who travels for work, and I have a busy 9 year old who is the best kid -fun, kind, helpful, supportive, and silly. I just started Calquence (acalabrutinib) and have been at full dose about a week and a the half. So far overall I'm feeling much better and labs are looking like they're moving in the right direction. The problem is I wake up with these awful headaches, like I can't see straight. I'm working hard to stay hydrated which often means waking up around 3-5 am to use the bathroom and the headache has already started. Caffeine is recommended and helps once I'm up for the day, but I can't take it for my middle of the night wake ups. The headaches make it really difficult to get moving in the morning to be present for my kiddo, so I'm testing out new morning routines for that. Any suggestions for the headaches that won't keep me from getting back to sleep? Any morning routines that have worked well for anyone else? Thanks!
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Trisha
Chronic Lymphocytic Leukemia Discussion • May 13, 2025
Managing Severe Weakness & Pain After V?
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I am curious to hear if anyone has had the serious muscle and joint pain and weakness on V. It has been terrible for me. I've gone from a very active, outdoor, energetic woman to one who has fallen several times, can barely climb one set of stairs, painful to kneel down or get up from the ground. This started at 3 months in and has continued even after being off the drug for 6 months. My Oncologist tells me that often these side affects don't go away ever. I live in the country, have raised horses for years, busy with yard work, a swimmer until taking the drug. Any suggestions other than light exercise? Since this problem started, I have actually fallen and fractured my kneecap because I have lost so much strength in my legs. This has actually changed my life in very unpleasant way. I am doing OK with the CLL, was first diagnosed in 2016. Only a couple of bad times when the WBC's got really low. Just wondering why they didn't mention this side affect when I started the drug and if anyone has heard if they have found a solution for this. I read the suggestions but no one seemed to have had the reaction I have had to taking V.
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Iliana • Admin
Chronic Lymphocytic Leukemia Discussion • May 7, 2025
Say Hello and Introduce Yourself
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Hi, I’m Iliana, the Social Media Manager at HealthTree.
We’re so excited to have you join HealthTree Connect! We’re building a new community, and we’d love for you to be a part of it.
Feel free to post in the General Discussion, or if you haven’t already, join a group and start connecting there. 👋 Introduce yourself and share something you’d like to learn or talk about—we’d love to get to know you! Thanks for being a part of the HealthTree community!