Swollen nodes on

[CillDaraAbu]

Hi all,

I am a 61 yr old male, living in Ireland. I've been "lurking" here for a good while, always very informative.

I was Initially diagnosed with CLL in Dec '13, completed four cycles of FCR after which I was in remission until 2019, when disease started to progress again.

Next treatment started in 2019, Ibrutinib worked very well until spring 2022, had to stop because of side effects, tingling/burning in hands and feet and strange sensations in spine, possibly peripheral neuropathy which resolved following stopping of the treatment.

August last year noticed a hard spot on my tummy, left of my belly button, following CAT scans, etc it was diagnosed as swollen lymph nodes, however was not causing an issue so was decided to watch and wait.

Restarted Acalabrutinib Feb 23 following weigh loss, fatigue etc around Christmas and January and also swollen nodes on neck. At this stage I am about 50 days into treatment and fatigue is much better, lymphocytes are slowly coming down, and rest of bloods are good.

However, the hard lump remains on my tummy, in original spot. It's not causing any issues, just annoying.

I am checked every week, bloods and review, I attend haematology clinic in a Dublin hospital, they don't seem too concerned however mentioned maybe changing to V + O, however not sure if this is a good idea.

Question is, would this be the normal response to Acalabrutinib or should lymph nodes have disappeared by now? I am up again Thursday for review/bloods.

Mick

[AnnieZ102]

Hello Mick, sorry I don't have any advice to offer. Just letting you know I'm also in Kildare!

Best wishes,

Anne

[SofiaDeo]

Some folks lymph nodes respond quickly, some don't. Some lymph nodes don't ever go back down. The BTK inhibitors are also considered "slower acting" and many report a period of ALC actually *increasing* for a bit before coming down. As long as you are feelimg better and other parameters are normalizing, you are fine. Hopefully this annoying node will eventually go back down. If you aren't having drug side effects, maybe just wait and see how things go. "Faster" is not necessarily "better" in CLL, the faster lymphocytes are killed off, the higher the risk of Tumor Lysis Syndrome. The nice thing about a BTK inhibitor is you don't need IV's in clinic, or need to be hospitalized, or need intensive monitoring. The trade off is that things move slower. You can always keep V&O treatment in reserve, after giving this one a few years to see how it tamps down your CLL, and whether or not you develop side effects.

[Gampo]

Hi, I started on Acalabrutinib 4.5 months ago, after W&W for 3.5 years. I'd had swollen lymph nodes under one arm for a year or more and since starting with Acalabrutinib and that's not changed - it goes up and down, some days it's worse than before treatment started. In all other respects the treatment is going well - WBC coming down along with my spleen. I don't have any knowledge on the medical side of this but thought it might reassure you to know you're not alone in having swollen lymph nodes that aren't reducing during treatment. Good luck.

[SERVrider]

Just to say that my cervical lymph nodes and spleen all reduced in size progressively on starting acalabrutinib. The WBC spiked alarmingly after I started but fell away steadily after a couple of weeks.