Reaction to and results of taking imbruvica

[aberk]

Reaction to and results of taking imbruvica

[Cllcanada Top Poster CURE Hero]

It varies widely and side effects are patient specific. Are you to have it for first-line treatment or second, third, fourth line?

After an initial adjustment period, most people do fine...

~chris

[ladyprescott in reply to Cllcanada]

So you say, Chris, lol. I've been on it since April (of course had that false start), on 280 mg. now and still don't feel good. So fatigued and throughout my time here on HU, I've always talked about being an exercise junky. Hardly go anymore. Did have a good day on Friday. Seriously, I am having a hard time with Imbruvica.

[Cllcanada Top Poster CURE Hero in reply to ladyprescott]

I know... I only lasted on it 3 months... hope you can get better management... and soon.

Back in the early days there was no dose reducing... I just got tired of my doctor telling me to stay on it... then the Cipro/ibrutinib debacle pushed me over the top...

~chris

[zaax]

Not 'Yellow' & a lot more stamina

[10Pen]

I started on Ibrutinib in Oct 2017. I was severely neutropenic for several months, had 6 months of random joint/bone pain and my nails/fingertips have split occasionally. Everything has settled down now and I’m back at work and enjoying living a pretty normal life again.

[SouthFloridaLady]

I began imbruvica on Friday. Not sure if my fatigue is due to my blood counts or imbruvica.

[RJR1]

I will mark two years on Imbruvica July 1st. Virtually no negative side effects beyond the troublesome brittle nails and split skin onnfingertips. I'm nearing 68 so attribute aches and pains to normal aging. Fatigue just plain goes with CLL...pace yourself

[ohiojim]

I was diagnosed with 11q deletion CLL in late 2015 when my platelet counts dropped to 1-2,000. I had multiple platelet infusions, and chemo in early 2016. Nothing worked in bringing my platelet counts up for any length of time. In April of 2016 Imbruvica was approved here in the States, and my doc immediately put me on the recommended dosage of three 140 mg/day. My platelet counts started to slowly climb and within 10 mos were at 100,000. However, the side effects of fatigue, severe nose sores, and diarrhea were constant. At one yr on Imbruvica my doc reduced me to two 140's per day. My platelets continued to slowly climbed, and 6 months ago he took me to 1 pill (140 mg) per day. My platelet count last week was 149,000, and, though the fatigue is still there, all other side effects are almost nonexistent. Imbruvica is a wonder drug.

[CLLCalifornia-USA]

Ibrutinib has been a miracle drug for me. I am one of the fortunate people with no negative side effects, except frizzy curly hair on the underneath side of my hair in the back only. I have really thick hair so only me and my hairdresser knows. I started January 2017 when my CLL/SLL became more aggressive. Lymph nodes disappeared within 2 weeks. All my labs are in normal range. I can do anything a normal 66 year old woman can do and more. My fatigue is gone and I’m involved in and enjoying life. Ibrutinib is my third line of treatment and I’m on the full dose of three capsules. FR, BR, & IB have been my treatments and I’ve had CLL for at least 12 years however my doctors think longer. Also I’m Trisomy 12. Any questions, just ask. Best of luck. Sally

[Ladydi49 in reply to CLLCalifornia-USA]

I'm Trisomy 12 also and am unmutated also have CD 38 + and ZAP -70 + and will start BR in weeks

[Ladydi49 in reply to Ladydi49]

In 2 weeks

[CLLCalifornia-USA in reply to Ladydi49]

I hope you receive good results from the Bendamustne/Rituxin. I’ve read it is much milder for most people. I had some negative reactions from the Bendamustine and had to discontinue after the first dose. I did continue on Rituxin. However, I was in remission for two years before needing Ibrutinib so it sure did something for me☺️ My body just couldn’t handle it. Keep us updated on your journey. Prayers for good results. Sally

[BeckyLUSA]

Brittle, weak fingernails, wonky hair and diarrhea. But it is worth it!

BeckyL USA

[Njsailorgirl]

Hi. Short time on Ibrutinib, 5 mos, then started passing out, hospitalized to be dx with pneumonia. Immediately stopped Ibrutinib. While on it, an enlarged underarm node continued to reduce. Good news.

In remission now after 5 months of RB. PET showed excellent response. Now off everything cancer related.

My experience anyway.