CLL Treatment : I started Imbruvica 2 days ago... - CLL Support

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Kmegood profile image
27 Replies

I started Imbruvica 2 days ago . 420MG. Today is the third day and experiencing fever of 38C. When the shivering stopped I decided to check my temperature so now I know why so much shivering . Maybe my temp was even higher before but I didn’t think to check temp earlier. Is this common when taking Imbruvica ?

My counts kept getting worse so it came to a point that my relapse needed this treatment .

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Kmegood profile image
Kmegood
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27 Replies
cllady01 profile image
cllady01Former Volunteer

Kmegood, check with your Dr. today. If you can't get your Dr., go to the emergency room---a fever with chills is serious and could mean an infection.

Please let us know how thing go.

Kmegood profile image
Kmegood

Thanks for your reply . I put in a call to my nurse at 4:30PM. I should have called when I got the chills bit was too weak to react and suddenly the chills broke but have fever around 37.8-38C

My nurse will speak to my oncologist first think in the morning when she hears my message .

annmcgowan profile image
annmcgowan

Hi I agree with clllady you need to get this checked out.

Ann

Kmegood profile image
Kmegood in reply toannmcgowan

It is too late to go to ER . The hospital would probably have me sitting around . This covid thing doesn’t help. As soon as my oncologist hears I have fever she should know what to do . I will take the Imbruvica at 7:00PM . This is the time each day I was told would be best . It’s only day 3 for the Imbruvica . I was also prescribed an anti viral to take at same time it’s called Valacyclovir. I have another drug to protect my kidneys .

PlanetaryKim profile image
PlanetaryKim in reply toKmegood

I the drug for kidney protection allopurinol? Good luck to you. Hope you get some answers soon. :)

Kmegood profile image
Kmegood in reply toPlanetaryKim

Thats what I have Allopurinol

PlanetaryKim profile image
PlanetaryKim in reply toKmegood

A lot of us have had that at the start of treatment. I had it when I started ibrutinib, and also more recently when I started venetoclax. How's the fever? Any better?

Kmegood profile image
Kmegood in reply toPlanetaryKim

Thank for your reply . Your the first person to say something about your experience at the start of this drug . I appreciate every reply I get but it would be helpful to hear of people’s experiences taking these drugs

PlanetaryKim profile image
PlanetaryKim in reply toKmegood

I don't recall having any issues with fever at start of ibrutinib - or at anytime on it. I do think the ibrutinib contributed to a very severe and prolonged back muscle spasm that developed shortly after I started taking ibrutinib . I dose-reduced and remained on a lower dose of 140 mg (then later 280 mg) for my entire 2.5 years on it after my first month at full dose. I had almost no other problems with ibrutinib in terms of day-to-day side effects. And it was super effective at controlling the CLL - a miracle drug really. But problems with arrhythmia and atrial flutter resulted in my doctor stopping that drug and switching me over to Venetoclax in February.

littledab profile image
littledab

Hi

I am sorry your feeling like that, i have been on it for 4 months. You should call your

Oncologist to see what they think..

Feel better!

Kmegood profile image
Kmegood in reply tolittledab

Thank you

littledab profile image
littledab in reply toKmegood

You’re welcome let u know!!

WinJ3 profile image
WinJ3

Definitely check with your doctor ASAP. Hope all will be alright. Let us know how it goes.

Win

Kmegood profile image
Kmegood in reply toWinJ3

I will . Thanks

Kmegood profile image
Kmegood in reply toWinJ3

My fever broke a few hours after I posted . I have no fever since yesterday

81ue profile image
81ue

I didn't have fever or shivering when starting imbruvica. I did have fever that didn't respond to tylenol or other medication when imbruvica failed to work and I was then hospitalized(sepsis)

Kmegood profile image
Kmegood in reply to81ue

Thank for your comments . I haven’t taken Tylenol yet because I only took

My temp after the chills stoppped . So now the fever dropped on it own just under 38C. If it goes up later I willtake a Tylenol

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toKmegood

Any high temperature with CLL, particularly when you are under treatment, needs medical investigation. It's common for all CLL treatments to cause neutropenia, which means your body can't fight off bacterial or fungal illnesses. This puts you at risk of febrile neutropenia, which if not managed promptly by IV antibiotics, can become fatal fairly quickly. If you go to ER with the symptoms you have had, you should be triaged in the same manner as if you were suspected of having had a heart attack. It's that serious. I've had this experience several times because of my chronic neutropenia, including last December, just after I started on Acalabrutinib, a second generation version of Ibrutininb. I was in hospital for 5 weeks.

You may not have neutropenia and it seems that your immune system is fighting off whatever is causing your chills and fever, but you are at increased risk now because you appear to have an infection and are at risk of developing neutropenia from that along with the Ibrutininb. My CLL specialists approved the use of tylenol/panadol to reduce my temperature, but advised me to avoid NSAIDS like ibuprofen, as these can suppress bone marrow production. I was informed that a severe enough infection would overcome any temperature reducing effect of Tylenol and in fact I've had that experience twice. You really need to know whether your neutrophil count is in a healthy range (ideally above 1.5) and even if it is, keep in mind that an infection can use neutrophils up faster than your bone marrow can make them. Neutrophils work by engulfing bacteria until they can't do so anymore and then die. That's what pus is - dead neutrophils full of dead bacteria. Please don't push your luck.

Neil

Kmegood profile image
Kmegood in reply toAussieNeil

Thanks for your info. FYI I am not neutropenic . I had test results 10’days ago and had more bloodwork done so my oncologist will be calling me soon. The big issue for now is my low hemoglobin , night white cells and lymphocytes which are high.

I’ve had FCR treatment in 2013 for 6 months which put me in remission till 2019 when I was slowly relapsing . So the last 2 months my CLL

Escalated a lot so my hematologist put me

On this Imbruvica. So I’m on it for 3 days so far .

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toKmegood

Neutrophils have a short half life, so be very much aware that if your bone marrow begins to struggle to produce them, you can become neutropenic in a week or so - even faster if you are fighting a bacterial or fungal infection. You could have a neutrophil count of 2.0 and a week later be under 1.0 quite easily. I've personally seen my neutrophil count drop quickly into dangerous territory a few times.

Stay safe,

Neil

Kmegood profile image
Kmegood in reply toAussieNeil

Thank you for the info

Ellieoak profile image
Ellieoak

Call your doctor and go to the ER.

zaax profile image
zaax

I had a reaction to the Allopurinol

Gary53 profile image
Gary53

Hi, I agree with the advice from Neil and others, which is basically that something is wrong, and you should seek medical help.

I've been on Ibrutinib and Privigen for 18 months, without a problem. Before that I had a lot of infection problems in mucus areas - nose, throat, lungs, etc. My head felt as though it would explode with pressure of infections, couldn't breath, went deaf, couldn't sleep for more than 10 minutes at a time.

A few days after the privigen and ibrutinib, it started to clear up. Wonderfully quick solution!

So, you should be getting better, not worse. There is a big list of side effects, so go check out what is going on.

In CLL the B cells outgrow their usefulness and crowd out everything else that should be in your blood. Low red cells means lethargy, low T cells means viral infections, and low platelets means bleeding. Of course it is far more complex that that. I'm under a haematologist, with a positive bedside manner that cures me, and he also gives me medication!

I was diagnosed 17 years ago, and given 8 years to live - mean average at my stage of CLL and Non-Hodgkin. So look forward not back. New drugs come out, and keep us going!

Back then they warned me that I would get lung infections. I am allergic to Septrin, anyone else had this drug for the lungs? Now on Dapsone, but this is destroying red blood cells, and giving a false reading on diabetic test - HBA1c. Anyone else experiencing this? Written to the doctor to see what should be done, as the local GP has cut down the gliclazide, thinking I don't need it.

Don't keep away from the hospital in fear of covid 19, if you really need treatment. Keep breathing! Gary

Kmegood profile image
Kmegood in reply toGary53

I am having treatment . I’m only third day on Imbruvica. My fever went away a few hours after I posted.

I slept well last night and this morning have no fever . My nurse called me and she will speak with my doctor but usually they see patience 2 weeks after they start Imbruvica . Yesterday I should have taken my temp when I first started chills not after it stopped . When the chills stopped I saw I had fever for a few hours longer .

So now I hope my temp stays normal .

studebaker profile image
studebaker

I was told that, anything above 38C needs to be checked at the ER.

That happened to me when I started my first treatment with Obinutuzumab and Chlorambucil combination twice. I did go to the ER both times. First time they admitted me while trying to figure out what was going on. My Neutrophils were at 0.4

even though, they were 1.7 one week before.

Second time it was UTI and I was given antibiotics and went home.

Now, I am on Acalabrutinib and doing good..

Please don’t play with fire and seek help when you have fever.

Good luck.

Dana

Kmegood profile image
Kmegood in reply tostudebaker

I have no fever . I had at the beginning when first starting Ibrutinib but last only half a day and for last 2 months on the Ibrutinib I havnt had any fever. I know if you have 38C you need to go to the emergency .

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