Just when you thought CLL was enough to deal with! advice on BTK inhibitors and Heart Attack Meds interactions?

[Rich316]

Since my last post, informing that I had come out of a 4 year remission, after FCR, I have been monitored for my ALC and lymph node enlargement. After 6 months my ALC had reached 24 and some spleen and node enlargement . My Haematology team suggested I would not need treatment this year.

However, a few days ago I had to go to hospital with several hours of chest pain. Turns out I was having a heart attack. With Clot busting drugs administered, an hour long ambulance journey and two stents later I am still alive, albeit with some significant heart tissue damage (to be confirmed with scan).

Cardio team seem quite upbeat that, after rest and rehab, My life could get back to nearly normal. Unfortunately, bloods have shown that my ALC has jumped from 24 to 84 in 10 weeks (could this be as a result of the Heart attack?)

I will be released from hospital tomorrow (God willing) with a host of drugs to assist heart recovery and prevent further attack, including Statin, Aspirin and other Anti- coagulant, Beta-blocker etc. The Cardiologist suggest that the drugs should not interfere with BTK inhibitors, with the exception of maybe anti-coagulants because of platelet levels. I haven’t been in touch with Haematology team yet, but does anybody have any experience of CLL treatments whilst being on Cardiac care treatments?

Thanks all.

[ikahan]

Twelve years ago my husband Mel ( with CLL ) has had a major heart attack with 5 stents. I think that triggered his CLL. Now his heart function is good. He is taking Plavix and aspirin everyday, two anti-platelet agents. He is also on acalabrutinib. His oncologist felt that acalabrutinib was better for him than ibrutinib, given his heart condition.

[Rich316 in reply to ikahan]

That is very reassuring- thank you very much for your prompt reply. My regards and best wishes to you and your husband.

[Jm954 Administrator]

Hi there,

Heart attacks do cause an increase in the lymph count (and also neutrophils at the time of the attack) so don't worry too much at the moment, it's early days. However, it may be that they will remain higher than before the heart attack.

For people with heart issues and needing anticoagulants (including aspirin), Acalabrutinib is a better option than Ibrutinib so ask your doctor if that's an option that's available to you. Otherwise Venetoclax plus Rituximab is a good possibility.

All the best

Jackie

[Rich316 in reply to Jm954]

Jackie, Thank you! It was suggested that V and R were going to be my next line so that is great news. This is all very reassuring and stress levels subsiding already.

[Rich316 in reply to Jm954]

I have just read your profile and wanted to thank you for using your expertise on this forum and replying - unsolicited - as a person who is particularly knowledgeable in the CLL field. We all forget to ask those nagging questions at our brief consultations and we all have moments of panic and having people like you, who will use their knowledge, training and experience to ‘pour oil on our troubled waters’ so to speak, is such a blessing.Thanks Jackie

Richard

[Jm954 Administrator in reply to Rich316]

Richard,

thank you for those kind words which are very much appreciated. I think everyone in this group is here to help others as well as gather information for themselves, it's a great place to be.

I hope things go smoothly for you with your recovery and CLL treatment.

Take care

Jackie

[Rich316 in reply to Jm954]

Hi Jackie, Just to keep you updated, as you were so helpful in your reply.

I am not sure that when the cardiologist had it wrong, when he told me my ALC was 84, but the last tests, before discharge from hospital (on 31st Aug) showed ALC of 42. A dramatic reduction to what I would expect it to be (there or there about) or, as I said, a mistake on his part.

Discharged from hospital and my Haematology team in Cardiff have brought my appointment forward to next week so can discuss tactics, but if I can hold off treatment for a year then one of the anticoagulants will cease I will only be on aspirin (Along with the statins, beta blockers etc).

So, hopefully, not all doom and gloom.

Thank you again for your replies.

Richard

[Jm954 Administrator in reply to Rich316]

That's good news.

The lymph count ( and neutrophils) can go up and then down again very quickly following a heart attack and I'm glad that appears to have happened for you.

The numbers are still not back down to your pre heart attack levels and they may stay at this new level but it's much better than 84.

I wouldn't think that you were heading for treatment any time soon.

All the very best

Jackie