Sll/Acalabrutinib/lymph nodes

[Tofa80]

I am a month into treatment with Acalabrutinib and I can still see and feel many lymph nodes. I’ve been reading on this site that many seem to have had much better results so far…

anyone with a similar experience?

[cllady01 Former Volunteer]

Tofa, I know once treatment starts it is difficult to be patient, so I hope you can reread your post from last week when you had finished 3 weeks and found that some of you nodes have been decreasing in size and at least one of the answers you got was encouragingly saying that at two months there were very evident changes for them .

When will you see your CLL specialist again? that will be when you will have evidence to how the medicine is working.

I hope you are feeling well and not having any side effects making you feel bad.

Time seems to go slowly when you begin a treatment because you are anxious to see results. You have seen some results with the lessening of the size of some of your nodes. The problem is that not all nodes are palpable or seeable. With SLL you most likely have interior nodes that are enlarged to a degree but you can't feel them.

Your spleen is the largest of lymph vessels and it has a lot of room for lymphocytes to lodge---the process has been building in you for I think you said, 8 years? So that is how long it took for each node to get to the size it was when you started treatment and if the med. works to empty all of them, it has to get around the entire body--there are a lot of nodes.

You have been on Acala for 4 weeks---the drug works well, but not so fast as we may wish it to do.

Best wishes for your continue to feel well and going about your life while Acala takes care of the nodes you are aware of and all that you are not aware of.

Please report to us when you have your next Dr. appt. results. Also, do not hesitate to post any questions you have.

[Tofa80 in reply to cllady01]

thanks so much for your response. I’ll have an appointment with my specialist in two weeks and a scan in 1.5 months. Will keep you posted and thanks again for your response!

[cajunjeff]

Tofa, most people on here have Cll, not the sll version of Cll. Sll is characterized by having much more Cll in the nodes as opposed to in the peripheral blood.

I am no doctor, but it stands to reason that if one has sll it might take longer for acalabrutinib to clear the nodes than someone with Cll who has less nodal involvement.

So I would give it some time and not worry yet. Resistance to acalabrutinib is relatively rare for someone first starting out on the drug, so it’s unlikely you are resistant to acalabrutinib.

You didn’t say if you have had any nodes start to shrink, even though they are still there. If they are shrinking at all, that would be a sign acalabrutinib is working.

Hopefully someone with sll who has taken acalabrutinib can weigh in on their experience. The experience of those with Cll on acalabrutinib might not be an apples to apples comparison.

[Tofa80 in reply to cajunjeff]

thanks you very much for taking the time to respond to me! Yes, some have definitely shrunk. Your answer makes sense and is encouraging. Thanks again !

[pbaddi]

In the 1st month I see the reduction in lymph was noticeable in SLL case & after that it will be slow as I think it could be working internally but we don't feel it.

[Tofa80 in reply to pbaddi]

makes sense. Thanks much for the response!

[CaptRon1976]

mine took two months Tofa. Your baseline starting point is likely different than mine. In 2-3 months I would expect you to see a big difference. We all have different markers and deletions. However, Acalabrutinib is commonly very effective for all of us.

Hang in there, have your initial side effects calmed down?

Ron

[Tofa80 in reply to CaptRon1976]

thanks for the encouragement! Yes, side effects have almost gone away…. Getting better each day now..,

[CaptRon1976 in reply to Tofa80]

👍🏻

[Teemed]

Good Morning

I’m 4 months into Calquence

My neck nodes went down quickly but in last visit to MD I still have some that can be felt when pressed . So I guess it’ll take time to get ‘em all!

This dx is just so individual in our exact journey is what I seem to observe . Hang in there and best wishes /blessings to you

[Tofa80 in reply to Teemed]

blessings to you too! Thank you !

[LynnB1947]

I began treatment in 2014 for SLL with ibrutinib, an earlier BTK inhibitor. My enlarged lymph nodes were internal and my doctor waited 3 months before running a CT scan. The results showed a reduction in size of about 2/3. Eight years later, I am still taking ibrutinib and my SLL continues to be controlled by a pill a day. Wishing you the best.

Lynn

[Tofa80]

thanks, Lynn! Glad to hear the treatment is working well for you! All the best to you as well!