Feeling sick with CLL and imbrutinib treatment

[1955Leilani]

Feeling sick with imbrutinib - Does anyone else feel sick all the time with this treatment. My friend has been using this for over a year. He still often feels sick to his stomach, has cold chills, and just doesn't feel good. Is this the cancer or the cure? He was diagnosed with CLL about a year ago. His blood counts have improved significantly but he still feels awful much of the time. Any others experiencing this?

[lankisterguy Volunteer]

Hi 1955Leilani,-

Your friend ( or you ) should report all the symptoms to a CLL expert doctor and seek help. It would be important to sort out whether there is another medical problem, an infection or other cause beyond CLL. If there are not obvious issues, an experienced doctor would likely reduce the doseage or pause treatment for a few days or weeks to determine if this could be a side effect of Ibrutinib. But having a doctor oversee this process is extremly important.

-

If your friend is not seeing a CLL expert and lives in the USA, they can apply for a free 2nd opinion here

healthunlocked.com/cllsuppo...

-

Len

[morepork]

I've had intermittent nausea ever since beginning Ibrutinib, plus some loose bowel effects, and now take 280 mgs (2 caps) instead of full dose. Have had to watch my eating (nothing with nitrates for instance), but have prescribed anti nausea tablets at hand I can take if needed. Keeping the fluid levels high too seems to help me. Your friend probably needs to discuss his discomfort with his doctor.Cheers from NZ.

[BluMts]

Please, please follow what Lankisterguy says. I had symptoms you describe on full dose of Ibrutinib and my CLL consultant waited until I'd been on IB for about 9 months before lowering my daily dose to 280 mg. I felt a lot better on the lowered dose, though not perfect. But as Lankisterguy says you need to have this problem assessed and treated by an expert in the CLL field. Surely, your friend has discussed his symptoms with his treatment Doctor? Is this Doctor a CLL specialist and what was his response?

[1955Leilani in reply to BluMts]

Thanks!

[1955Leilani]

Hi everyone - His doctor is a cancer specialist but I do not know if he is a CLL specialist. I'm going to talk to him about contacting the second opinion doctor. He is suffering daily, so I don't think what he is doing is working in his favor. Thanks for all the feedback!

[AnneHill in reply to 1955Leilani]

This definately needs looking into. Ibrutinib can cause stomach problems including bleeding. Sounds frightening but drugs like this need close monitoring. Anne uk

[81ue]

I don't want to alarm you, but I do think you need to have your friend see his doctor as soon as possible. The words you wrote re sick to his stomach and cold chills - please please have him see his doctor. I had one symptom of fevers that could not be controlled (temp went up too high and down normal and then up again for a week) and it turned out that I had ulcers in the stomach and esophagus that caused infection (didn't know that until hospital exam) , ulcers were from the imbruvica, that led to sepsis and I ended up in the hospital a few days and switched meds. All I thought I had was fevers. Your friend has shivering ? I don't think that's normal at all.

List of some common Sepsis symptoms include (may have one or more):

Fever and chills

Very low body temperature

Peeing less than usual

Fast heartbeat

Nausea and vomiting

Diarrhea

Fatigue or weakness

Blotchy or discolored skin

[Kmegood]

Hi. First of all the Ibritinib/ Imbruvica since I started on it 14 months ago has kept me stable. My bloodwork improved after the first 3-4 months. My energy level is great. I am able to bike 25-35 KM without tiring and did walks for at least 2 hours 3-4 times week the whole winter regardless of the cold weather. However I have other problems such as terrrible bruising. Also sometimes feel shortness of breath during the night. Those with CLL can experinece many basil carsimona coming out and need treatments for it. Sine are pre cancers and some can be positive cancer cells. Overall my condition is not that bad.I will have a follow up this coming week and will learn about my ct scan and other tests.