Wife of CLL husband

[Marn1]

My husband was diagnosed with CLL 7 years ago And went in remission after receiving chemo for six months

The leukemia came back last year and now he is on the oral drug and he has had numerous respiratory infections and is receiving the IG factor monthly

It is hard living like this not knowing if the extreme fatigue and constant cough is due to the leaukemia or the drugs

I am looking forward to hearing how others are dealing with CLL

[MsLockYourPosts Passed Volunteer]

Welcome Marn1 - Is the oral drug Ibrutinib, aka Imbruvica? There are many here with experience with it who can answer questions about their experiences. You don't mention what country you are in. You might want to restrict your post to community only and give some information about your location. The group is quite international, so there are sure to be members familiar with the specifics of your location in terms of support, specialists, etc.

[Marn1 in reply to MsLockYourPosts]

Yes it is ibrutinib. Ok I will try to restrict the location

[MsLockYourPosts Passed Volunteer in reply to Marn1]

Click on the v next to more, then edit and scroll to the bottom of your original post. You can then change your setting to community only. You will see a little lock next to your title when you click on it. It protects your privacy and that of anyone who responds.

[Jacksc06]

Hello. So sorry to hear of your husbands Illness. I have catalogued my journey from diagnosis to present day. Please feel free to browse & i hope that it is of help to you. Best regards.

[Gailandbert in reply to Jacksc06]

Hi . Where can I find your blog ?

Thanks

[Jacksc06 in reply to Gailandbert]

Click on my profile pic. That should lead you to it.

[Gailandbert in reply to Jacksc06]

Thanks

[Gailandbert in reply to Gailandbert]

Thanks.

[PlanetaryKim]

Hi Marn1. Sorry to hear about your husband's difficulties. Everyone responds to Ibrutinib (Imbruvica) a little differently. Some experience side effects, others not so much. I have been on it 5 months now.

Fatigue is a side effect some people experience from Ibrutinib. Did your husband's fatigue begin or worsen after he started the Ibrutinib? And what are his blood counts? Specifically, his hemoglobin. Some of us enter treatment very anemic from the CLL, and our fatigue is due to the anemia. My anemia has now cleared (thanks to the ibrutinib), and I am feeling good. But sometimes I am overcome with fatigue that comes out of nowhere. I think that is an Ibrutinb response, and/or perhaps some kind of cytokine release happening. I don't know. In my case it doesn't happen too much or for too long. Others here have reported a lot of fatigue on Ibrutinib.

Good luck!

kim