coming out of remission. Cll

[tom3659]

coming out of remission cll, 13q deleted bone marrow. 50 to60 % involvement of b cell lym. What to next . Treatment?

[PlanetaryKim]

Hi Tom. I see you had 6 rounds of BR in the past (2017). Lots of possible treatments now, as you know. Ibrutinib, Acalabrutinib, Venetoclax with or with rituximab or gazyva...

I was on ibrutinib 2.5 years. Worked very well with minimal day-to-day side effects for me. But I was having increasing problems with atrial flutter, due to ibrutinib. Was moved onto Venetoclax in February. No more atrial flutter. Also minimal side effects with venetoclax so far.

Each of those drugs seems to be super effective at controlling my CLL. Everyone is different. But that's my experience. Good luck to you!

[EJM52545 in reply to PlanetaryKim]

Kim, I’m in same shape as you. After 2.5 years on Ibrutinib, I’m now on A-Fib. How did A-Fib disappear? Did you have a cardio- version or any other type of procedure? Tks, Ed

[PlanetaryKim in reply to EJM52545]

Hi Ed. No, I declined the heart medication and cardioversion for the AF when I went to emergency. I was pretty sure that the AF would stop by me switching from ibrutinib to venetoclax. And it did stop.

My AF was not continuous. I would have a 4-5 hour episode every few days or week. If you are experiencing continuous non-stop Afib, then that might require some immediate intervention.

But also talk to your doctor about switching to acalabrutinib or ventoclax. Having afib on ibrutinib is usually grounds for switching to another drug that doesn't cause it. Good luck to you, Ed!

kim

[Bichi in reply to PlanetaryKim]

Thanks Kim for your prompt response! I think my hematologist want to switch me to a new medication, one of those you mentioned that is not so hard on the heart.

[PlanetaryKim in reply to Bichi]

I hope that happens for you Bichi - that you can be switched to something else if you are currently on ibrutinib and experiencing AFib.

[Canuck901 in reply to PlanetaryKim]

How was the joint pain with Ibruntnib? How did you manage it?

[PlanetaryKim in reply to Canuck901]

I never had joint pain on ibrutinib. I did have a ferocious back muscle spasm (disabled me for 3 months) shortly after I started ibrutinib, which I feel was related. That is why I dose reduced. And really had no problems with it after that (apart from the atrial flutter).

[tom3659 in reply to EJM52545]

Yes before a coule of times.

I finally was able to get and ablation on my nodes in mt heart. They said i had more of a aflutter not fib. Happy getting off blood thinners...

[tom3659 in reply to PlanetaryKim]

Thanks

[AussieNeil Administrator]

Hi Tom,

You really haven't provided sufficient information in this or your previous two posts for anyone to comment on whether you are nearing the need for your next treatment. My bone marrow involvement was in the same range as yours 11 years ago and I'm now undergoing my first treatment.

This post will help you work out whether you meet the criteria for treatment: healthunlocked.com/cllsuppo... Make sure you have a specialist who sees lots of CLL patients and who is experienced with the latest CLL treatments, so you'll get properly evaluated and then assigned to the most appropriate treatment for you if you do eventually need treatment.

Neil

[tom3659 in reply to AussieNeil]

I do at the mayo clinic in Phoenix. Down south for other reasons, new docs and notmy same team. Just wondering more about the cost of drugs. Lots of them $$$$.

[AussieNeil Administrator in reply to tom3659]

You have a good chance of joining a clinical trial at Mayo though

[tom3659 in reply to AussieNeil]

Thats what i think. But i had aflutter and had it corrected via ablation on nodes in heart. But also have a AAA arotic aneurysm. 3cm but they dont treat until 5cc. I guess just normal. But with cllers were different...

[Canuck901 in reply to tom3659]

Exactly Mayo has lots of great trials for CLL