I was diagnosed 8 years ago today

[KevinCLLITP]

I was diagnosed 8 years ago today, as a matter of fact, and I completed my sixth phase of therapy a few weeks ago when I had to get off of Acalabrutinib because of the cardiac effects i was having, which had actually started in my seventh month of Ibrutinib. My previous treatments were Rituxan, in my 10th month after diagnosis, then Idealisib and Ofatumumab in a clinical trial, which gave me 39 months of no advancement of disease. I later had to have additional courses of Rituxan and then we ended up starting monthly IVIG a year ago and then IBTNB in April of last year.

All I can say is watch your side effects closely and force your physician to help you manage them. In my case, I spoke for months that we were watching the impact the drugs were having with the disease but we were doing nothing regarding what they were doing to me personally. I had a myriad of problems on Ibrutinib but I have to say the cardiac issues have been the worst and most difficult to deal with. I am on my eighth week of arrythmia now with resulting problems like a numb right side, fast heartbeat, wild swing in blood pressure amongst other things.

I will be following closely the Venetoclax results people have because that will be where I will end up, but I think we will attempt to watch and wait for a few months and take a dose of IVIG on a monthly basis, as one of my problems is ITP. Ibrutinib also sometimes causes issues with blood platelet levels, yet it actually helped mine, until the drugs turned on me and I developed the cardiac issues and at the same time my platelets went from 36k to 9k over just about a five day period.

But I still walk this earth with a lovely family and celebrating a new grandson born the day before my 65th birthday just last week!!!

[PlanetaryKim]

Hi Kevin. It sounds like you have been through quite a bit. Have you been on both ibrutinib and acalabrutinib? I see you mention both in your post. Does that mean that the cardiac effects that started on ibrutinib did not stop when you switched to acalabrutinib?

I am in a similar situation - moving to venetoclax because of cardiac effects (atrial flutter and arrhythmia) that developed on ibrutinib.

Good luck to you!

[KevinCLLITP in reply to PlanetaryKim]

In my seventh month on Ibrutinib it was as if the drug turned on me, my platelets dropped and I developed a junctional arrythmia. I was off the drug for about two weeks and a lot calmed down and I started acalabrutinib. All I can say is that the symptoms returned with a vengeance and in two weeks I stopped the drug. That was the week before Christmas and here we are five weeks later and I am still sidelined with heart issues.

[Cammie in reply to KevinCLLITP]

Kevin

It’s a bummer when medication gives side effects!

Of course, we are all different, I actually had arithymias with chlorambicil in my first treatment in 2005 and diagnosed with a heart murmur on FCR in 2015. Turns out it was due to reaction of meds with aortic stenosis.

Having recently had a new heart valve things have settled but still the occasional blip as the electrical system isn’t A1.

Hopefully any new treatments for you will assist in minimising side effects and we all wish you well!

Has your haematologist referred you for consultation by cardiology?

I would certainly get things checked out so treatments can be sorted holistically.

Best wishes.

Geoff

[PlanetaryKim in reply to KevinCLLITP]

That sounds very rough! I sure hope the doctors can get your heart settled down soon... and that there is some CLL drug you can go to. Perhaps they will try venetoclax next for you? But getting heart stabilized sounds like the priority. I assume a cardiologist is involved at this point? (There is one in my near future.) Wishing the best for you!

kim

[KevinCLLITP in reply to PlanetaryKim]

Luckily, at Dana Farber and the Brigham I not only have a world class cardiologist, but also one who is versed in the affect of BTK inhibitor type drugs on the heart! I am lucky in some respects, I guess!

[PlanetaryKim in reply to KevinCLLITP]

Well at least that much is good!

[Ernest2]

Many thanks for posting Kevin, and the very best of luck on the Venetoclax.

Keep focusing on your last paragraph.

Wishing you well,

Ernest

[bachplayer13]

kevin how did you know your platlets dropped so low in that short period of time? where they doing frequent labs? what side effects did you have to tip you off re the platlets? did they try dropping your dosage rather than discontinuing entirely

[KevinCLLITP in reply to bachplayer13]

I was rushed to the hospital by ambulance on Monday and released and then I had my oncology follow up on Thursday, so there was a CBC done on both dates.

[Mystic75]

Happy Birthday, Kevin and congrats on your new grandson! 👶🎂🎈

Thank you for the advice and I hope the worst is behind you. All the best when you initiate the Venetoclax treatment.

Take care,

D.

[bachplayer13]

What was the reason they rushed you to hospital? Chest pain passing out? Was it cll related or something else?

[KevinCLLITP in reply to bachplayer13]

We thought I was having an event, AFIB or worse, BP was 220/100 and my heart rate was 120 plus. In extreme chest pain. It was later found to be a junctional arrhythmia. I was actually sent home that day after an EKG and bloodwork as well as chest X-ray and CT scan. I had my regular follow up with oncology the next Thursday.

[bachplayer13]

So sorry to hear that must have been so frightening!! Glad you were ok!!