Being able to work taking abruvica

[showdog]

I live alone and wondering about side effects and if I will be able to manage my 2 jobs. I know everyone is different just would like some input on experiences with quality of life

[cajunjeff]

The answer to your question is that, it depends on how you tolerate ibrutnib. My sense is that most people who take ibrutinib as a first treatment do fine and have little to no work restrictions. I have been on it a year and have not missed any work, or any play for that matter.

Some people develop an intolerance, some develop resistance, to ibrutinib. Those who take it as a first treatment do better as a whole and most live normal lives while on it.

But you will not get any guarantees. You just have to treat and see. And its not like any alternative solves your problem. Some of the other treatments, like chemo, have their own set of side effects that could interfere with work. And if you do not treat, you will eventually not be able to work if your disease is progressive.

[showdog in reply to cajunjeff]

Thanks

[AnneHill in reply to cajunjeff]

Hi, my cll is progressing after being in remission for 5 years. Its been over 2 years and docs want to wait a bit longer before treating. Fatigue has become so bad Iv asked to be treated. I go back in a week and Im seeing a support nurse to help me cope but Im past that, will see consultant as well.

I imagine my case will be discussed. Im in uk and was going to be treated with Ibrutinib. They are concerned that Ibrutinib may not help this fatigue and I wont neccessarily feel better. I wish I knew how many people do have relief from the fatigue.

Also since my visit NICE have agreed Venetaclax plus Rituximab for previously treated patients.I like the fact that it is for 24 mths and chance of mrd. I have no idea of the side effects. I also dont know if I will be treated with it.

Iv had CLL for 18 years and this is the worst Iv felt. Anne

[showdog in reply to AnneHill]

Thank you

[migirlusa]

I have been in Imbruvica for 6 months with very little side effects. The best part is my energy returned right away.

Wishing you the best of luck.

Pam

[zaax in reply to migirlusa]

I will add a me too. In fact I was surprised in what I could do, and how much CLL was physically affecting me, in that in the end, just before treatment, I was getting exhausted quite easily.

[SheySheySwimmer in reply to zaax]

That's exactly how I was. Since starting Ibrutnib in October, I feel so much better.

Best to you.

Sher

[showdog in reply to migirlusa]

Good to here

[MrMidnight]

I have been on Zanubrutinib for three years and have been dealing with severe fatigue all that time, which has made it impossible for me to go to work (although I have been able to sit at my computer at home and write). The fatigue has lifted significantly in the past six months but I still don't have the energy to go to work. However, my haematologist tells me I am the only one of 50 patients on the trial who is fatigued in this way. As she told me a year ago, "I have people going to spin classes on this drug!" So I am obviously the dunce (but grateful to be alive)!

[tlcladygiraffe]

I am on ibrutinib 16 months..third cancer treatment for me..side effects did not show up at first..then they started...dealing with them but lucky I am retired and have been for 15 years,,am 75 always had been healthy until May 2016..diagnosed with mantle cell lymphoma stage 4...it is a fighting battle all the time but I have a great support system and my loving family and friends help me cope..miss travelling...good luck I hope all goes well.

[showdog in reply to tlcladygiraffe]

Thanks