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Shelbgt350

3mo ago

Navigating Treatment Options for CLL

12 years fighting cll. BTK inhibitors mutation. Now onto obinutuzimab and Venetaclax. A bit fearful of the cardiac side effects I’ve read about. Hoping Dr will start a low dose regimen and slowly ramp up.

Your answer

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Michele.PatientPower

3mo ago

Hi @shelbgt350! We were diagnosed around the same time as I too have had CLL for 12 years now. Thank goodness there are so many more treatments now. Have you started your Ven + Obin? Did they ramp you up / or will they be ramping you up? Please let us know and how you're doing.
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Slavena1958

3mo ago

12 years fighting strong is a great feat. Your story inspires me to keep on fighting too. I will be going for stem cell in 12 days and praying it will be a smooth ride. keep me in your prayers as I bear you up in mine. Stay strong soldier!
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Michele.PatientPower

2mo ago

@Slavena1958 How are you doing on your stem cell transplant? If my calculations are accurate you should be about 9 days into it? Please keep us updated here.
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Chicoseven

3mo ago

I have been on Gazyva and Venetaclax for 7 months. I had similar concerns too, because I had also heard of the cardiogenic side effects. My doctor addressed my concerns and also put me on consistent cardiac monitoring. From my experience, I understand where you are coming from because I have been there too. Please let your doctor address these concerns to soothe your heart's fears. Sending you warm thoughts and hope
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Michele.PatientPower

3mo ago

@Chicoseven Have you had any cardiac issues since starting? What was it like when you ended your Gazyva (Obinutuzumab)? I was so happy when I was finished with that part of treatment!
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boolyyy

3mo ago

Good luck, how are you feeling? 🫶

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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