Hi, I'm new here and follow this blog with great interest.
I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission.
For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good.
Now my CLL has returned .
4 months ago a low grade fever started , about 37.5C . A chest X-ray showed swollen lymph nodes all over so my hemato started testing for CLL and my FISH brought a bad surprise - TP53 deletion. So they asked me to join an Ibrutinib-Acalabrutinib trial group.
I started Ibrutinib 4 days ago. Since then I get very high fever - almost 40C - every evening. My head is "burning" and I feel very weak. I was hospitalized for one day and went through all the blood, urine tests and chest X-RAY. Found nothing, except a very high CRP - 47. I received iv antibiotics but no change . My hemarologist does not think the high fever is a side effect of Ibrutinib.
I do think it is. I have no other infection .
Did anyone suffer from high fever as a side effect from Ibrutinib ?
Thank you for your support.
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You may have already read something about CRP high levels. It sounds scary--inflammation somewhere in your body--it could be arthritis or something not so scary, but Ibr. does have a history of side effects that can be serious. If you continue to feel uneasy, insist on another look by the hematologist, or see a cardiologist.
Others may be able to be more clear on what possibilities or likely with Ibr. I have no experience with it or with trial situations.
Did your blood tests include uric acid? Hyperuricemia can be associated with a high CRP and also with a fever if you are experiencing TLS tumor lysis syndrome. I had a very high ALC at 220 when I started ibrutinib, so I was pretreated for a week with allopurinol to lower existing uric acid, and was also infused with rasburicase by IV on Day 1 and 2 of ibrutinib to prevent a new uric acid formation and TLS. My uric acid level was slightly high even before I started treatment, and I did have a 1 degree rise in body temp the first day and my face flushed for a short time during infusion. Are you taking allopurinol?
I am on Imbruvica since mid Jan 17 , and due low IvG got recurrent infection of lungs like Pneumonia ( like you) and last month got Fungal infection in lungs ( due bacteria) and also water in right lung which on analysis contained 44% lymphocytes. In all cases had high grade fever which acted as a sign of infection somewhere in body -- and not account Imbruvica. In short pls ask your Onco doc or better consult a GP to locate source of infection.
I am now on monthly dose of IvIG to boast immunity and thus to avoid other infections.
I've been on ibrutinib for over 3 years and have never had a problem with high fever. At first, I was taking ibrutinib plus rituxan IV every 4 weeks, & I would run a low-grade fever (less than 100F/37.8C) in the evenings for about 1-2 weeks after the rituxan IV but after the rituxan was stopped after about 9 months, the fevers stopped, too.
Hmm ... it certainly sounds like the cause of the fever is something else.
Fever is one of the signs of lymphoma progression. My wife took Ibrutinib for over a year without any fever. However all patients are different and respond to cancer treatments differently.
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