Do you experience new lymph nodes after starting Acalabrutinib? + Issues with Plavix

[paula_dae]

Greetings Everyone,

I want to share our latest experience with CLL and the treatment we started with Acalabrutinib.

My mom started getting severely worse by the hour with huge lymph nodes in her neck and abdomen, so we started Acalabrutinib. In the first week all her lymph nodes got very reduced in size, by the first 2 weeks the ones in the neck almost completely disappeared. Now 1 month passed and she got a completely new lymph node on the neck since yesterday. Is that normal did you have similar experience? We will consult with the doctor probably on Monday.

On another hand, she has blockages in the arteries and reduced blood flow to the legs. SO the doctor advised her to not stop the Plavix but it resulted in massive bruising especially on the face, so we stopped it.

Regarding the blood work, the WBC worsened a bit as it was expected but nothing have moved too much, except for the kidney measuring test which improved severely.

So I wonder, was your journey with Acalabrutinib steady constant improvement or having the new lymph node is normal?

[LeoPa]

I haven't read a story like that so far. Are you sure that's a lymph node?

[paula_dae in reply to LeoPa]

yes unfortunately. The old lymph nodes started coming back just after a month on the medication

[LeoPa in reply to paula_dae]

In that case it should be checked whether she developed a resistance to the medication. If so, switching to Venetoclax might be an option.

[paula_dae]

The doctor said it is normal and that white blood cells redistribute through the body, but her lymph node keeps on growing. Based on what I read it doesn't feel normal. Will go for another checkup tomorrow.

[SofiaDeo in reply to paula_dae]

Is she having any upper respiratory symptoms, or have a cut or scratch on the head? anywhere above that new node? It's possible that even on treatment, a node might "flare" briefly in the presence of infection. So it's possible it may not be drug resistance, get everything checked when you see the doc.

[paula_dae]

Nothing visible. Will do a blood test and checkup tomorrow. Thank you!

[Hidden]

HI Paula ,

what the doctors said about the new lymph nodes which your mother got during treatment on Acalabrutinib ? was it due to any infection ? also i am keen to know what resolved the blockage in arteries and reduced blood flow as you had you did stop Plavix

[paula_dae in reply to Hidden]

He said that its redistributing of white blood cells in the body and can happen, now they are almost gone.

[Hidden]

good to know. thanks for the reply