Hello everyone! New here and just would like to wish everyone healing in their CLL. I joined to get different perspectives as my Mother has been diagnosed with CLL in December of 2021. Started Calquence in August of 2022. In October of 2023 she was rushed to the hospital because of a 120 heart rate and 200 blood pressure. The cardiologists couldn't pinpoint the cause, which of course can have many. But when they communicated with her CLL specialists, of which I also spoke with too, they claimed that it was a high probability it was caused by the Calquence. And they told me that these side effects could spring about even years later, as she never had any side effects up until that point. They also said "Of course, we are not sure it was the Calquence that caused it". She does have high blood pressure and cholesterol and has had them for nearly 12 years. She's been taken off the calquence and started on venetoclax now a month and a half. She says she feels worse on the venetoclax - slight nausea, slight loss of appetite, some pain in/near heart and an extremely elevatedalkaline phosphatase, which her doctors said they aren't worried as her other blood tests look good, so they said no liver or kidney issues. My Mom wants to go back to Calquence but her doctor said he's afraid of the heart risks becoming even worse if she were to go back to Calquence and is urging her to stick through with venetoclax, at least until her next blood draw in 2 weeks. I guess I'm just looking for any similar cases, anybody knowledgeable on both medicines. (She's been given new medicine for the artrial fibrillation since the incident, so maybe that would halt any heart problems if she were to choose going back to Calquence or should she still give venetoclax a chance?). Thank you all.
Artrial fibrillation after nearly 2 years of C... - CLL Support
Artrial fibrillation after nearly 2 years of Calquence?
Pirtobrutinib (Jaypirca®) is a bit less likely to cause heart problems or hypertension than Calquence (acalabrutinib), but all CLL drug therapies have side effects, See jaypirca.com/hcp?gad_source...
Asking her provider for anti-nausea prescriptions and taking her venetoclax during her largest meal of the day should really help -- if these do not make her more comfortable, perhaps ask her physician if the daily dose might be lowered.
I am so sorry to hear about your Mom’s trouble with the treatment options, but yes BTK Inhibitor Therapy all have Cardiotoxic potentials. I was on Full Dose of Zanubrutunib April 2023 & on day 13 after 60 min of Cycling I developed chest pain. It started as Pleurisy but untreated it progressed to Left Pleural Effusion, Pneumonia vs Aetelectasis. I stopped for 6 days & started back with half dose Acalabrutinib for 10.5 weeks (100mg daily) but I had an ongoing untreated infection. I did experience palpitations but I blame the infection & after adequate antibiotic therapy it went away eventually. 3 ER visits for chest pain in 3 months.
I switched back to Zanubrutinib at 80mg per day for 3 months (1/4 the dose) while my heart & lungs healed & now increased to 80mg twice daily for 3 months(1/2 dose). I just resumed my exercise regimen because I put on 30lbs since not able to workout for 8 months. Cardiology just gave me the best encouragement after my exam, checking my excellent labs & my normal blood pressure since exercising again, even with the weight gain. He said ‘Don’t Stop’🛑
My CLL Specialist wants to increase my dose but with me having such a rough start & then suffering all the main side effects but mostly with my numbers so good, it’s questionable. When I went to 1/2 dose, my Plts dropped 80->60, WBC dropped as we hoped 30->18, I was in more bone/joint pain & I got an Upper Respiratory Infection that I demanded antibiotics for this time. The URI resolved, Plts bounced to 90 & I just dealt with the pain. I brought the CLL Specialist bloodwork from my local Onc office & the xray results from Orthopedics. I do that now because even as a retired RN of 30yrs+ they treat me like I’m senile. I told her that we need to stay on the same page since I don’t have energy to repeat myself, every visit for me is a big risk so it must be worth my while.
I asked the CLL Specialist about O&V therapy which is pitched as short term with long durable remission (~4yrs+) after 1-2yrs of therapy. My CLL Specialist said no & said that we will stay with the Covalent BTKI Therapy until it no longer works or side effects become intolerable & next choice would be a Non Covalent BTKI Therapy. I did not ask her why because I suspect that she knows my low tolerance for drugs. When they were trying to keep me full dose they kept telling me that 90yr old patients can tolerate it full dose, so🤷🏽♀️. Also I do not take vaccines or willing to do IVIG. And what I am reading that durable uMRD Remission comes with a more compromised immune system, mainly low neutrophils. My neutrophils have dropped down since I went to 1/2 dose & have not bounced back since going to 1/2 dose in 3 months. So if she says I am not a candidate for O&V, I can take her word for it. I heard that nausea comes with Venetoclax.
You didn’t mention her labs but its based on effectiveness & tolerance. Can she reduce it to 100mg daily & maintain good labs? This is a lifelong drug so it needs to be harmonious with her life. My CLL Specialist said that she just wants me to take the medication since I am not swayed with what anyone else can do or is doing. She is listening & my labs are telling the story. She was excited by my labs as was the Cardiologist so apparently I know my body. Hgb 10.8->12.5, Plts 76->103, WBC 81->9.8, IGG 415 & Neutophil 1.5. Even consider switching to Zanubrutinib with the best dose reduction ability & least cardiotoxic. I do not feel chest pain or palpatations now. I love Zanubrutinib since its strong & a little goes a long way, 80mg daily was doing the thing for 3 months & I may go up🤷🏽♀️ but only as tolerated. #GODSPEED 🙏🏾 sorry its so long but this hits home…
Hi from the southern Hemisphere CoachVera.
Just had to say that your words ""even as a retired RN of 30yrs+ they treat me like I’m senile"" made me say ' Me too!" AND I get called "Dear" in those patronising tones. 😒
Yes it tends to feel very dismissive 🤦🏽♀️ However in my past I’d never tell anyone that I was a nurse, they would ask after I explained my symptoms, gave them the differential diagnosis & plan of care lol 😂
I came into this cancer arena too trusting when this is too damn serious to do that! I fully enjoy the ‘patient’ role now though, where we work as a team & I have the final say. I no longer negotiate with terrorist because that is an accurate description of what I was facing being discharged from an ER with a collapsed lung, standing in front of the Oncologist with active chest pain who prescribed the BTKI Therapy & even in front of my Pulmonologist of 28yrs, yet not one of them helped me. I decompensated & had to return to the ER within 48hrs by Ambulance. All I can say is NEVER AGAIN! Continue to advocate for your self because its scary out there.
This 2nd opinion Cardiologist really made my day. He really restored my faith in the medical system that their are doctors out there with your best interest. I felt like a colleague with him. I am back to exercising & I only have a on & off switch. Its a serious problem because when I feel good, I overdo it, now pacing myself is the focus.
But anywho for 2 weeks prior to my Cardio appt I hit my homegym. 30min on the Vibration Plate, 15 min on the Elliptical at zero level & 30min on the Upright Stationary Bike up to level 5 (30 is max & 15 is my max). I do that upon waking up, Fasting Cardio & it helps me drink my 50ml of water. I force myself to drink water & I can’t eat until I finish it. I just know that 2 of them will meet my requirement close to 1 gal daily.
I showed him my workout videos & he completly got me. He even showed me his pic on a Fan Bike too. I know its easy to like a doctor who does what you ask, but he puts thought into his answers. Case in point, he seen me swollen & I asked for Lasix & he ordered it. I never used it because I decreased my inflammation naturally but it feels good to have if & when I need it but I didn’t want electrolytes imbalance issues either especially with leg cramping that I get from time to time already, usually during/after Pilates.
So the last 2 weeks of jumping back into exercising at that level caused me chest pain but I determined that it was my Costal Chondritis flaring up. The pain was my chest wall & not my heart. The chestwall was tender to touch & the pain was positional. Also with hip arthritis pain 10/10 these days I use edibles, oral marijuana & Flexiril muscle relaxant. I requested Nitroglycerin SL & Flexiril which he ordered. Costal Chondritis is treated with NSAID, Steroids, Muscle Relaxants & hot/cold compress. I passed on the first 2 choices & utilized the former 2 choices & the pain went away.
After everything, since I got what I wanted, EKG, Nitro & Flexiril. He was very excited about my labs too plus my Blood Pressure with him. My normal bp is 130/70 & that is what it was but every other visits I was 140-160 systolic & 70-90 diastolic. EKG was my normal Sinus Bradycardia with LVH noted. I showed him my Plantbased diet & as a Certified Nutrition Coach he loved it. So I said honestly doctor I can be a bit pushy but I need to know what you think about my regiment, with these chest pain hiccups & stuff. I can guess but you are the expert, he said no you are doing it the right way by listening to your body. His final words to me was ‘Don’t Stop’. So Life Affirming🙌🏾
My CLL Specialist on the other hand, shown the same workout videos says to me, you are making me feel bad. I said doc, I am the stage 4 cancer patient on oral chemo that almost died the first 3 months of this journey so you & I are not in competition. I had sunken into a deep depression that I am just climbing out of because of exercising. My heart & lungs are still healing but I took a courageous step & I’m proud of me. Please don’t bring me down!!! How you feel about yourself - young prestigious doctor, in good health & living your best life, has nothing to do with me. See I have to keep it professional & now even set up some boundaries. Our discussions must be limited to me & my progress. I won’t even discuss any other body issues with her when I can see that expert & relay that info to her with documentation. Getting too friendly with some docs blurr the lines & I need us both to stay focused! She also said something about me getting Pneumonia & that’s not okay. It almost felt like she wished it on me & I guess because I just don’t agree to the generic version of care. I need a plan of care that reflects my lifestyle & I don’t understand the need to constantly repeat myself. With the cardiologist it was a natural flow but this friction with the Specialist I feel, I don’t like it & I need to be cool, clear & firm🤦🏽♀️
I was on Acalabrutinib, and very happy, for 8 months when I had really bad episode of atrial fibrillation.
I was taken to ER by ambulance and had cardioversion, which worked for two weeks when the second trip to ER and second cardioversion plus tweaking my medication helped and I was taken off Acalabrutinib and started Venetoclax &Rituximab treatment for two years, which gave me remission since November 2022.
I am still in remission and hopefully will be for a long time.
Venetoclax gave me nausea and I was using anti nausea meds until I started to take it with dinner, which helped a lot.
Dana
I am not a doctor but my experience with a family member who experienced multiple instances of Afib has convinced me you don’t want to fool around with Afib.
In your case, you are trying your best to help your mom. It may be wise to get another opinion from a CLL specialist if you aren’t sure about her current treatment plan.
With any medication for CLL, there are going to be side effects as the medication gets rid of the lymphocytes.
That being said, I am on Pirtobrutinib (a non-covalent BTK inhibitor) and have had few side effects. The incidence of serious side effects is less compared to other BTKs. She could consider that along with her CLL specialist in two weeks when she goes back in.
I followed the advice of another poster SofiaDeo who suggested resting during the first four weeks of treatment. I went on walks around the neighborhood but nothing strenuous.
This is making me frightened of this med. I wonder if I should talk to Dr. Lamanna to switch me to something else? Atrial fibrillation scares me so much.
The incidence is fairly low of Afib. The key here is this particular person already had Afib so going back on Acalabrutinib is likely not going to be recommended.
But it is very reasonable for you to express your concerns. Many have been very successful in this drug; just not everyone.
Hi, I also have Afib. Mine kicked in after chemo four years ago. It may have been the cause BUT probably as likely is that I was about 70yo and at that age theres 10% or so likelihood anyway.
My Afib has been corrected with DCR, recurred and corrected again. I have meds in case of recurrence to stabilise a bit and prevent clotting, until the next DCR.
My CLL relapsed and I've recently completed 2 years on Venetoclax during which the Afib recurred, but my cardio expected that anyway, so most likely V wasn't to blame. I had nausea early on Veneoclax eventually resolved by taking it in the middle of heaviest meal of the day.
Very best wishes for your Mum getting back on track!!
Venetoclax will be a limited duration therapy. If she can manage through the time frame set out by her docs she may get a good remission. Acalabrutinib is a long term treatment until it either stops working at controlling the CLL, or the patient develops issues that cause it to to stopped (as with her afib). Hoping she can get the venetoclax side effects stabilized so she can see out this treatment. Best to you both.
Atrial fibrillation is not the same as high blood pressure. I assume that someone with a damaged cardiovascular system from earlier (taking blood pressure medication) will not see much improvement of his cardiovascular disease once he starts taking a BTK inhibitor. But I wonder whether there is anyone here who was heart healthy and not on blood pressure medication and still saw his blood pressure go up when he started to take BTK inhibitors.
I am on Pirtobrutinib and my blood pressure has not gone up. I am 72.
Thank you, that's very good info. May it stay that way. It would be reassuring to know that people with good cardiovascular health do not need to develop high blood pressure issues on BTK inhibitors
I have a heart workup scheduled for March. Hopefully I will still be heart healthy!
🤞
Hello LeeBic
I am two months post venetoclax and I would hang in there with venetoclax. It was bearable for me even with gastrointestinal issues. May require experimenting with different foods, nausea meds and timing of meals. Blessings.
I had to come off Ibrutinib because of Afib episodes. I had had one episode before treatment and it was a concern when I went on the Ibrutinib. They would have allowed me to try Calquence but I decided to do O+ V instead and have not regretted it.
Managing the Venetoclax side effects were "easier" than dealing with more potential Afib. My dr. recommended Metamucil which did help me quite a bit. It seems counterintuitive because it's supposed to lessen constipation but it also bulked things up too. Best of luck!
Commencing Venetoclax 
Venetoclax - hallucinations?
Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)
ibrutinib and rising Blood Pressure
A hellish 2 months. Very confused about MRD measurements.
