Diagnosed with CLL and put on watch and wait back in 2006. Encouraged by mainly good prognosticators I lived with the night sweats and put CLL to the back of my mind whilst keeping an eye on my blood's slow deterioration. This changed in around 2018/9 when the dreaded exponential increase came knocking and eventually, in 2023, my consultant predicted treatment in 12-18mths - V&O being his choice.
Good though extended W&W is it does give the opportunity for other comorbidities to come along and establish themselves. Having mild heart problems in the past it still came as a surprise when I was hospitalised in November this year with 'Atrial flutter with variable blacking levels' - short hand for a sustained heart rate of 130bpm plus. On discharge with a bag of beta-blocker and conditioning drugs (Digoxin and Bisoprolol), and blood thinner (Apixaban) after some time the Atrial Flutter has metamorphosed into Atrial Fibrillation - see profile
Now quite anxious as to how I should approach upcoming treatment for CLL in the context of continuing treatment for AFib? Anyone of you knowledgeable people in the group any experience of simultaneous CLL and AFib treatment?
Any response gratefully received
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I went into Afib in 2012 and while going through that also found out about CLL from the blood tests they did then. Double whammy! I have the paroxysmal variety of Afib (in and out of it for maybe a day or so and not permanently).
My first CLL treatment consisted of O + Ibrutinib. I was concerned about the chances of Afib with Ibrutinib and did have to come off of it due to another spell, but I also had pretty awful joint pain so that was a big part of the decision to stop.
A year and a half later I did O+V for a year and it went really well. I did have another afib episode but it's hard to say if it was from treatment or not, as it was almost 10 months into it. I converted out of it on my own and haven't had any since.
Apparently Venetoclax has a lot less Afib side effects then the Btki's. I understand your concern but from my experience it can be managed. You and your docs will weigh it out and figure out your best plan.
Thanks ThunderCat2, I also found it reported that Ibrutinib had AFib as a side effect so being treated with it, when already presenting with AFib, didn’t seem the best choice. With few options available on the NHS for my age and conditions O+V seems the less problematic -I hope
As you say just have to rely on the medics to plot a treatment path that might work🫣
I have a lot of faith in my team and have managed to push through all of the "extra" things that came up. Sometimes it seems overwhelming but its truly amazing how resilient our bodies are.
To mix metaphors 'Stepping into uncharted waters is always a worry' my medical team has yet to be tested but, hopefully, they'll match the service yours gave you. Have a feeling they will 🙂
I have paroxysmal Afib, and had one cardioversion 10 years ago. I have gadca few other incidents over 10 years. I was just put on a low dose beta blocker by my cardiologist and a baby aspirin. My oncologist vetoed the aspirin because my platelets have been low since I was diagnosed with CLL/SLL in August, and bleeding, or lack of clotting, was already a possible issue. So blood thinners might be a concern. I think venetoclax lowers platelet count, but anyone reading this can correct me.
I have not had any Afib during 3 months of obin infusions or during or after the venetoclax rampup. I am in month 3 of the schedule.
My cardiologist and oncologst don't seem to talk to each other but read my records as they are in the same medical system.
Hi Exercise lover and thanks for the reply. Can relate to the lack of communication between cardio and oncology. I find it’s even difficult getting information from them so one can act as go between
Also understand that venetoclax depresses one’s platelet count and taking blood thinners- to reduce probability of stroke/ heart attack- apixaban in my case, during V+O treatment is problematic.
Good news your AFib remained dormant whilst you had your Obin infusion and Vento ramp up. Long may your treatment keep things at bay
I have had paroxysmal A-fib for decades. I had been on aspirin to help prevent clots and Verapamil to help regulate heart rate. Coincidentally, right before V+O treatment, my BP started dropping too low and had to stop Verapamil which is a strong CYP3A4 inhibitor and would have interacted with Venetoclax. Since I had no episodes for years, my cardiologist kept me on just low dose aspirin. I opted for V+O due to known possible A-fib related side effects from BTK inhibitors.
I did fine throughout treatment with just a daily baby aspirin. About 9 months later I had several short A-fib episodes and was put on Metoprolol and Eliquis (Apixiban) in place of aspirin. In my case, timing was everything in terms of cardio meds, but the lack of A-fib during treatment was a good thing. Definitely talk to both your specialist and cardiologist about your concerns. And wishing you an easy treatment journey.
As you wisely comment Flute117 - Timing is absolutely everything. Keeping all those plates in the air requires good judgement, accurate monitoring and agile response.
I was quite sanguine regarding any upcoming CLL treatment but thrown off kilter a wee bit when AFib joined the party. Thank you for sharing your thoughts and your reassuring words.
Hope your future brushes with both CLL and AFib are both mild and manageable
Managing chronic lymphocytic leukemia (CLL) alongside atrial fibrillation (AFib) can certainly feel complex, but with a coordinated approach between your hematologist and cardiologist, it’s possible to develop a treatment plan that addresses both conditions safely and effectively. Here are some considerations based on your situation:
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1. **Understanding V&O Treatment**
- **Venetoclax (V)**: This is a targeted therapy that works by inhibiting BCL-2, a protein that helps cancer cells survive. It's effective but requires careful monitoring for tumor lysis syndrome (TLS), especially in the early stages of treatment.
- **Obinutuzumab (O)**: A monoclonal antibody that targets CD20 on B-cells, often given as an infusion. It's generally well-tolerated but can cause infusion-related reactions, especially during the first dose.
2. **AFib and Its Management During CLL Treatment**
- **Beta-Blockers and Digoxin:** These are standard treatments for controlling heart rate and rhythm in AFib. However, they may interact with CLL medications:
- **Digoxin**: Can sometimes interact with drugs metabolized by the liver, so dose adjustments might be needed if Venetoclax affects liver enzyme pathways.
- **Beta-Blockers (e.g., Bisoprolol):** These are typically safe but monitor for excessive bradycardia, particularly if combined with other medications that can affect heart rate.
- **Anticoagulation (Apixaban):** This is crucial for stroke prevention in AFib but requires careful consideration during CLL treatment, especially with Venetoclax, which can slightly increase the risk of bleeding. Regular blood work and INR monitoring are essential to balance the risk of bleeding with clot prevention.
3. **Potential Drug Interactions**
- **Venetoclax and Cardiovascular Medications**:
- Venetoclax is metabolized by the liver enzymes (CYP3A), which means any medications affecting CYP3A (e.g., certain antibiotics, antifungals, or even digoxin) could alter Venetoclax levels, increasing the risk of toxicity.
- Close coordination with your healthcare team is critical to adjust dosages or choose alternative drugs as needed.
- **Obinutuzumab and Cardiovascular Risk**:
- Infusion reactions (e.g., fever, chills, hypotension) are most common during the first dose. These could theoretically strain the heart, so your AFib should be well-controlled before starting Obinutuzumab.
- Premedication with corticosteroids, antihistamines, and acetaminophen is standard and may help minimize the risk.
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4. **Monitoring During Treatment**
- **Cardiac Monitoring:** Ensure your AFib and overall heart function are stable before starting treatment. Your cardiologist may recommend:
- A baseline **echocardiogram** to assess heart function.
- Regular **ECG monitoring** during treatment to catch any exacerbation of AFib or arrhythmias.
- **Frequent Blood Tests:** To monitor for TLS (with Venetoclax) and ensure safe kidney and liver function.
- **Bleeding Risk Management:** Regularly check hemoglobin, platelet counts, and coagulation profiles to balance the dual risks of bleeding (from anticoagulation) and thrombosis (from AFib).
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5. **Practical Tips**
- **Team Approach:** Insist on a collaborative care plan between your hematologist and cardiologist. This ensures all drug interactions and potential complications are addressed upfront.
- **Hydration:** Staying well-hydrated during Venetoclax therapy is essential to prevent TLS. Discuss with your cardiologist how to balance hydration needs with heart failure or AFib concerns.
- **Symptom Awareness:** Monitor for any new or worsening symptoms, such as dizziness, palpitations, or excessive fatigue, and report them promptly.
- **Prehabilitation:** If possible, work with a physiotherapist or cardiologist on light exercise or rehab programs to optimize your cardiovascular health before starting CLL treatment.
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6. **Shared Experiences**
While it’s natural to feel anxious about navigating treatment for both conditions, many patients with co-existing CLL and cardiovascular issues have successfully undergone treatment with proper planning. If you're part of a patient support group, it might help to hear from others who've managed similar challenges. They can provide practical insights and emotional support.
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Conclusion
Starting CLL treatment while managing AFib will require some extra care, but it’s entirely feasible with a well-coordinated approach. Your next step should be a detailed discussion with both your hematologist and cardiologist to create a tailored plan. Focus on stabilizing your AFib, monitoring closely for any interactions, and ensuring you have access to the necessary support systems.
You’re on the right path by seeking knowledge and asking questions—this proactive approach is one of the best ways to ensure safe and effective treatment.
First thank you for your comprehensive, coherent and eminently relate-able advice.
Getting to a 'collaborative care plan', including correct monitoring and incident response, is my current goal. It's daunting, especially the 'mutually agreed' part. My oncologist is in Edinburgh (3hrs away) and my cardiologist in the Scottish Borders Hospital, BGH, (30mins) and I'm experiencing difficulty getting them on the same page and even more difficulty being kept in the loop.
The plan pre:AFib was the Edinburgh consultant maintained control but the infusion/monitoring was to be done at BGH. Seeing my Edinburgh consultant for our regular 6mth checkup next Tuesday and will attempt to address some of the points you so lucidly raise particularly, given the risk of CCL treatment in the presence of AFib, ask if one can receive inpatient care for the initial infusions/monitoring
Thank you for your brilliantly lucid insights and up beat tone
CLL diagnosed in 2019. Treatment started in June 2022, mainly due to many enlarged lymph nodes in the abdomen. I had the standard V and O treatments. I had no issues with the afib and almost no side effects from the treatments. I was able to carry on my usual active lifestyle. Have been in remission since May 2023.
Gosh thank you for your positive response Hiker13.
Trailblazers like yourself give us, as followers, confidence that all isn't doom and gloom, there's a good chance successful treatment and keeps hope alive
I started Ibrutinib 6 years ago, gradually slowed up over 2 years and diagnosed with Afib…..possible side effect of Ib…who knows? However went to cardiologist in London who recommended a cardio inversion…..successful initially but Afib turned into Atrial Flutter after 3 months, so I had an ablation March 2023. Back to pre SLL fitness ever since. I should add I switched to Alcalabrutinib 2 years ago too.
I seem to be going the opposite direction having started off with Atrial Flutter which, post taking heart medication, metamorphosed to AFib such that the second cardiologist I saw backtracked on the first's opinion that ablation was the way to go - removing the need for heart meds and hence any conflict with CLL treatment -by saying though ablation was straightforward for Atrail Flutter it was a much more serious procedure for AFib and it would not be considered an appropriate treatment in my case and to stay on the meds
Hope your treatments for both CLL and Afib continue to be effective
After many years on Ibrutinib with a decrease in CLL problems Afib problems made it necessary to stop the Ibrutinib. The Afib decreased but did not go away. My GP, general practitioner, suggested that caffein, alcohol and sugar omitted from my diet might help. Stopping all alcohol , caffein and sugar might help. Well, as a daily tea drinker and a several times week of a glass of wine or two who also enjoyed decent pastries, it was difficult to do. But I did eliminate those things and have managed to decrease the Afib quite a bit. Hope it helps, even though the med’s and treatments are the best bet. 78 year old Southern California Ted.
I'm hoping to remove(or at least substantially) reduce stimulants viz sugar, alcohol and caffeine) from my diet to maybe stabilise my AFib, which, unfortunately, seems to have settled in for the long term.
I drink little alcohol as it is, switched to decaff coffee a while back and gave up chocolate on my last birthday but, as you say, tea, in all its varieties, is a bit of an Achilles' heel. Surprising with it's EGCG I like green tea but sage and papaya need more work but having said that I do occasionally backslide to a good Lapsang or Oolong - a glass of water, just not the same.
Having said that I guess needs must, I'll follow your lead and redouble my efforts into total abstinence. Thanks again for your insight
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CLL WITH NO TREATMENT 
coming to end of V+O treatment
V and O treatment
O&V treatment
The flip side of Ibrutinib; the roller coaster continues (atrial fibrillation / flutter) 
