Ibrutinib and returning of symptoms of tiredness and fatigue

[Dym230109]

I am based in the UK. I was diagnosed with CLL on the 3rd March this year. I developed Lymph Nodes, was very tired and fatigued most days, coughed a lot and had sweats at night. I started Ibrutinib on the 6th June and within about 3 weeks my Lymph Nodes had gone down and I was no longer tired or fatigued and felt 100%.

From 2nd August my Lymph Nodes are starting to increase again and I feel tired and fatigued and have a slight cough and slight sweating at night.

Question: Is this normal that symptoms such as above can return. If so, will they go away again?

Thanks.

[Jm954 Administrator]

Hi there, lymph nodes and CLL symptoms can return quickly if ibrutinib is paused or the dose reduced early in treatment and will go away again when full dose ibrutinib is resumed.

However, you haven’t mentioned stopping your Ibrutinib for any reason so I’m going to assume not.

You need to speak to your haematology team and have a review with them, preferably face to face, as soon as possible as it’s important to know what is happening here quickly and get on top of it. It may be nothing but it could be important.

Let us know

Jackie

[Dym230109 in reply to Jm954]

Jackie,

Thanks for the reply. Yes, I am continuing to take Ibrutinib. I hope to speak to my Consultant today.

Magnus

[Jm954 Administrator in reply to Dym230109]

Please let us know what they say, all the best

Jackie

[morepork]

Fatigue - oh yes. I discovered 3 weeks ago what those of you with it were talking about . On Ibrutinb and 17p deleted but never had nodes. Have now read up all the Fatigue related posts on here. Had a routine phone appointment scheduled with my haematologist 3 days ago so I reported that I was now falling asleep every time I sat down. His response was - "Your Hb levels are fine so your fatigue is in no way related to your CLL"

I'm wondering if my very low Ig's have anything to do with it ??

[Hectanooga in reply to morepork]

You will find from posts on this forum including my own, that drs are very quick to dismiss fatigue or low energy as being related to CLL. I have been on Ibrutinib for just over a year as I am P53 deleted and unmutated . I have had constant fatigue since being diagnosed. It is disabling. When I discuss this with my hemotologist she says my blood work is good so it's not the CLL. It can however be caused from the Ibrutinib. I was a very active, some would say too active pre CLL. I have no other conditions that would explain the fatigue

It is very frustrating when your symptoms, no matter what the cause, are not acknowledged by your health care providers. I cant explain why I am so fatigued, I just know that I am and it chronic. I felt like my hemotologist thinks I am making it up or it was from something else. I gave up trying to get symptoms validated. Unfortunatey they are only concerned about the blood. Which, I guess is what they do best. In any event, fatigue is real and experienced by many CLL patients.

[Jemorgen in reply to morepork]

I have SLL in that my bloodwork is always pretty normal - except an occasional dip in neutrophils and a recent rise in LDH. There is nothing in my blood to explain my fatigue and my former gp always dismissed it. My hematologist and my specialist both affirmed my fatigue talking about the “burden of disease.” Please believe your fatigue is very real and most definitely due to your CLL.

[AussieNeil Partner Administrator in reply to morepork]

The most likely reason for CLL related fatigue in watch and wait is cytokine production from CLL cells in your nodes and spleen. That can result in flu like symptoms of fatigue and won't show up in standard blood tests. Perhaps low Ig counts could be making you more susceptible to sub-clinical infections and hence your fatigue. Or given you've not been on Ibrutinib for long, it could be due to the extra work your body is doing, dealing with the dying CLL cells, or perhaps the medications you are on.

Neil