CLL , Lyme and Ibrutinib

[Sergi]

Hi everyone

I am wondering if anybody had to deal with this .

My wife started Ibrutinib 10 days ago and the first week looked promising. Nodes in the neck going down and minor belly pain.For the last 3 days , the Lyme symptoms that she usually keep under control with low sugar,gluten and dairy products came back with a vengeance, she can barely walk , joint and muscle pain , feelings of bad circulation make us wonder if those are the result of the Ibrutinib treatment or Lyme taking advantage of her low immune system

Thanks

[Jm954 Administrator]

Sergi,

I’m pleased to hear that her nodes are going down nicely.

I’m afraid that musculoskeletal pain is experienced by approx 37% of patients on Ibrutinib and I know from experience that it can be very debilitating.

Hang in there if she can as these side effects will come and go, eventually subsiding but it can take some time.

Best wishes

Jackie

[claire2017 in reply to Jm954]

Please call her oncologist ASAP to make them aware.

[Sergi in reply to claire2017]

Hi

I did and also a new blood test

Her wbc jumped to 200k which explain muscle and joint pain according to her hematologist

He was more interested in paletets which are back in range at 158

Thanks

[Sergi in reply to Jm954]

Thanks Jackie

[Cindi73]

Hi Sergi, I've been on Ibrutinib for 11 months. In the first few months my cll doctor n rheumatologist both agreed. The Ibrutinib caused my Fibromyalgia to flare up. It will get better. I wish your wife n you all the best. Hang in there. God bless. Cindi

[Sergi in reply to Cindi73]

Thanks cindi

[moments]

Reading my own info for Ibrutinib I would say it was the problem. Talk to your doctor immediately. This Target Pill works but there are some things that it irritates severely.

[Sergi in reply to moments]

Thanks

We want to continue the treatment so painkillers ,exercise and good diet is our stoke back plan !