New to Imbruvica

[Legaldoc]

3years in remission and my CLL is back. My WBC is not outrageous (66) but my ONC wanted to start me on Imbruvica now. Been on it little over a week and the fatigue factor is troublesome. My. Ind days let’s do But the body sYs let’s lay down for awhile and talk this over. U derstNd fatigue big factor.

[Jm954 Administrator]

Hi Legaldoc and welcome to our community. We aim to provide a safe space for information, support and a refuge when you need it.

If you lock your post to this community only it will prevent it being seen by Google searches and you may get more answers.

The pinned posts have lots of good information and in particular,

PaulaS post 12 tips to get more out of the forum is worth a read for new members. Here’s the link: healthunlocked.com/cllsuppo...

Best wishes

Jackie

[Jacksc06]

Hi. Not tried Imbruvica but can sympathise with the fatigue. I had treatment a couple of years back & find the fatigue relentless. Best wishes on your journey.

[TimHB]

Prior to treatment I had debilitating narcolepsy-like fatigue that would strike without warning and knock me out cold for a good 40-60 minutes every day. Since starting treatment on ibrutinib that kind of fatigue stopped immediately. I now have general fatigue which is very tolerable and manageable with exercise and coffee, but I still can't do as much as I used to. Fighting CLL is hard on our bodies - especially when in treatment - and we have to give it a break once in a while.

[AmericanRonin]

Don't be alarmed if your WBC spikes way up in several months. When I started Imbruvica, my WBC was close to normal and went up to about 129 in 4.5 months. Then it started slowly going down. Now (over 2.5 years since starting Imbruvica), my WBC is about 15, and hopefully continuing to go down toward normal.

[Panz]

Legaldoc, we are in this together as I just started Imbruvica 420mgs this month on January 5 so we are on the same road going in the same direction. This is a great place to come to for support. There are bound to be some side effects we have to deal with. I have always fought fatigue and that remains. I have experienced some Petechiae on on the lower part of my legs an a spot on my back ( Petechiae is just bruising with red dots and a tiny sore spot in the center). I called my doctor and she had me come in to check it out and assured me it was just a side effect. This brings me to the point that AmericanRonin made. When I started the Imbruvica my WBC was over 80. Two weeks later when I went in to have the legs checked out I was 216, I was aware that the WBC would be going up but had no idea it would go that high....10 days later at my routine appointment/Ig infusion the WBC was 169 so I felt better to see it heading down. In a couple of days I will be calling in to have my next refill of Imbruvica. I am doing great and would love to hear how you are doing.

Best of luck to you! 🙏 ☘️ 🙂

[Panz]

Also, I was told I could expect it to take 6-8 weeks for my body to adjust so it doesn’t happen overnight. Hang in there, 🙏☘️🙂

[17Pisme]

What you're going through with Ibrutinib is standard. It does get better though the rashes and occasional blood marks are enormously inconvenient (especially on the face where mine seemed to inhabit) but the grand payoff of LIFE is more than worth the side effects.

[Splashes]

We all respond differently to imbruvica. I am 70 years old with high risk CLL. Taking imbruvica for over 2 years. No fatigue at all. I sleep well at night and wake up ready to go. Oncologist says I have the health and energy of a 50 year old. I didn't want someone to be afraid of taking imbruvica because, honestly, this drug saved my life. Only side effects have been curly hair (which is quite cute) and my nails break easily. Toe nails have fallen off with no pain or blood. Weird. I'm alive, that's all I care about right now. Blessings to all you dear people.