Looking for insight here please. I started treatment for CLL last November; 280 mg daily. My numbers went down pretty quickly. I had headaches at first but that resolved. In March my doctor increased my dose to 420 saying he wanted my numbers to go down lower, faster. At this point my WBC was in the 70's down from over 200,000 at the start of treatment. I wasn't happy about the increase but went along with it. I had issues with heavy bleeding (periods) requiring me to have two infusions for low iron. I also gained weight and had swelling (not edema) in my legs. In July my oncologist switched me to Acalabrutinib because of the bleeding issues. I was only on it for 3 weeks with migraines daily. I drank my usual daily green tea in the morning but that caffeine intake wasn't enough so I started drinking a cup of coffee everyday as well. That would take the edge off. Tylenol does nothing for me and Advil is too hard on my stomach. I was only on it for 3 weeks because I ended up in the ER with afib. It was so scary. IV medication didn't work and I had to be shocked back into regular rhythm. I've never had any heart issues before. They put me on 25 mg metoprolol 2 x a day. I hadn't drank my usual amount of water that day and had a couple of drinks with my family that evening. I see a cardiologist that works with cancer patients this coming Thursday.
My oncologist is okay with me waiting to start back on treatment until our next appointment on the 17th. I'm frustrated and feeling insecure with my treatment teams recommendations. He'd initially told me to start back on the acala because he thought I was on blood thinners, what?! It's my understanding blood thinners and either ibrutinib/acalabrutinib isn't wise. My oncologist is very well known and trains other oncologists about blood cancers and I've had confidence in him but I'm shaken now.
I guess I don't even know what I'm looking for in reaching out. If anyone has any experience with my story I'd love to hear what you did. Hope I made sense here...
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Reneelj51
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Sorry to hear of your scary health challenges with treatment. Both Acalabrutinib and Ibrutinib BTK inhibitors do come with a risk of developing atrial fibrillation, though it looks like the risk with Acalabrutinib is about half that of Ibrutinib's. Given you were only on Acalabrutinib for 3 weeks, it may just be that you will need additional heart medication to stay on a BTK inhibitor, so I hope your appointment with a cardiologist proves helpful.
I presume your efforts to add Venetoclax failed due to insurance issues?
Thanks AussieNeil. Yes, we tried to get Venetoclax and insurance denied it. Maybe now this has happened I'll have better luck. I hate the idea of taking a medication to take another medication. I'm looking forward to the cardiologist appointment. Apparently he's an onco-cardiologist; dealing with medications cancer patients take that affect the heart. I looked on the list you provided and while my dr isn't on it another dr in their practice is. I did make an appointment with another oncologist for a second opinion. That's the end of the month.
I know it's hard to comment on each other's situation as everyone is different. Thank you for your help and suggestions.
An onco-cardiologist is exactly what you want. Hopefully with his help, you'll get that insurance cover for Venetoclax, perhaps with the support of your CLL doctor's colleague. If your other oncologist appointment isn't helpful, maybe you can ask your CLL doctor if he or any of his colleagues has experience negotiating with your insurance company in a situation such as yours. At least now, unfortunately you have more reason for the change.
I've had a slightly similar situation. On Ibrutinib for 4 years. Recently it began to increase my hypertension to the point of having a stroke and a TIA; I was given a statin and aspirin. My antihypertensives were increased. I remain on Ibrutinib.
I did some reading which said to adjust you body to work with the Ibrutinb rather than changing medications. When I asked my oncologist he explained it this way. You will develop resistance to the medication. Then you switch to another and eventually develop resistance to that medication. Stay on each as long as you can so there always be another available.
Don't burn through the drugs. That, at least is my interpretation.
Ibrutinib also increased my hypertension. I was given a statin and was already taking ASA. My drugs were adjusted and readjusted. They took me off of hydrochlorothiazide due to low sodium levels. That makes it tricky with water intake. I did drink the 2-3 liters.
My legs also have swelling and some days my feet Alacabrutinib has reduced that considerably. I can exercise more because I don't have the cramps or painful knees. I do start my day with a big mug of coffee and have not had any headache problems. The very first pill I just had a slight headache and has not come back.
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