lymph node on acala

[rggerlac]

Hello all, I’ve been on acalabrutinib for 4.5 years now and have had smooth sailing. In the last week, I’ve experienced some jaw pain and just discovered a small lymph node in my groin. I don’t detect lymph nodes anywhere else, even in jaw. Will call hematologist at Sloan tomorrow but I’m a little concerned. 😟 My numbers have been good. Anyone with a similar experience? Thank you.

[cajunjeff]

I am on acalabrutinib about 5 yrs now and had a lone node suddenly appear in my elbow last year. I showed it to my local doc, but by the time I got back to my regular appt at MD Anderson, it was gone.

I am no doctor for sure. It’s worth reporting to your doctor, that’s what I did. If you have mutated ighv cll, are less than 5 yrs into your treatment, have no other nodes, have unchanged labs and are taking acalabrutinib as a first treatment, I would bet its no big deal. It could be just some mild infection somewhere.

I knew all that when my elbow popped up, but it still worried me, so I know how you feel. I hope it turns out to be nothing, I think there’s a good chance it’s no big deal. Good luck.

[rggerlac in reply to cajunjeff]

Thanks very much, cajunjeff. Appreciate hearing your experience.

[Katinlr]

Are you sure that the enlarged node is new? Did you have lymph node enlargement prior to treatment?

[Pudelpointers]

Hi! I just found this site, but was searching for an answer to "increasing lymphadenopathy while on acalabrutinib" because that's what's happening to me. I've been on treatment for almost 2 yrs. CT scans show no significant decrease in lymph adenopathy and my local hem-onc wants me to go back to Mayo for their opinion. I've been waiting all week for Mayo to schedule me with someone. In the meantime, it's getting noticably worse.

[AussieNeil Partner Administrator in reply to Pudelpointers]

Welcome to our community!

When BTKi therapy drugs - the 'brutinibs' fail, they do so gradually. Unfortunately this means that if you stop taking what's seen to be a failing BTKi treatment, the CLL can quickly rebound - you can experience tumour flare. It can actually appear to be an aggressive transformation of CLL called Richter's Transformation or Richter's Syndrome.

This is why it is very important to stay on acalabrutinib until you are about to start your next treatment.

Neil

[Pudelpointers in reply to AussieNeil]

Yes, I will definitely keep on my acalabrutinib until the doctors switch me to something else or add something. Maybe venetoclax? I don't know what's next but I hope they get me in at Mayo soon.