On Treatment but Still in Pain

[Amberesque]

Hi all,

I was diagnosed with "aggressive" SLL in Jan 2021 and started treatment right away.

I was on ibrutinib for 1 year before discontinuing due to cardiac issues. I switched to acalabrutinib and have been on that for 9 months now.

While the swelling in my lymph nodes has gone down, I continue to experience sometimes excruciating lymph pain, especially in my neck and spleen, sometimes armpits too. Aside from the discomfort, it frightens me a lot!

My doctors say that most people with CLL/SLL don't have pain at all, and they certainly can't explain why I still experience lymph pain on treatment that appears to be working.

Has anyone experienced something similar or am I alone? If this treatment is working, why am I still in so much pain?

--

Amber in BC Canada

[lankisterguy Volunteer]

Hi Amberesque,

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These previous posts might help

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I found them by this search: healthunlocked.com/cllsuppo...

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Len

[Amberesque in reply to lankisterguy]

Thank you, Len. 🙏 I will go have a look at those posts.

[ladyscream in reply to Amberesque]

I have a lymph node in my neck that is always there, it causes me pain , I had an ultra sound to look at it and was assured it was ok and wasn’t pressing on anything, but area is often painful.

I was informed that the lymph node was displaced due to me having had a thyroidectomy and dissection of neck with 38 lymph nodes removed from the neck area.(who knew we had so many!)

So cause for discomfort is unexplained, maybe the space for swelling is limited and this causes the pain.

Hope you find yours will resolve with your treatment soon.

[DoriZett]

Sorry you have pain and discomfort. I was SLL diagnosed originally as well. I do have lymph node pain and discomfort but it did subside after several years on Acalabrutinib. I am back in W& W and they are bothersome again - but we still won't rush to treat unless other factors come in to play. Best to you.

[Amberesque in reply to DoriZett]

Thanks for your reply. I hope this pain will subside with time in treatment. Best to you as well.