Cll improvement on Ibrutinib

[Temida]

Hi everyone!

I started Ibrutinib on Tuesday last week. I was curious how quickly to expect improvement. I can see that my spleen and 2 lumps are already smaller. And nausea building up. Any thoughts about it?

Regards. Ta

[Kokobean]

Hi there. We noticed improvement really rapidly when my husband started ibrutinib over a year ago. I would say within the first 3-4 weeks, all noticeable nodes were back to normal. He didn’t get the nausea so maybe someone else can give some input on that. I hope you do as well on this medication as my husband. It’s been a life changer.

[Temida in reply to Kokobean]

I believe, I will Thank you for your response Can you tell me how long he was taking Ibrutinib, please?

[Kokobean in reply to Temida]

He’s been on it for almost a year and a half.

[Nickos66]

Hi Temida,I've been on ibrutinib for about 18 months,I started on the max dosage and have gradually dropped down to the minimum dosage, purely because I have suffered from alot of the side effects associated with this drug.It does indeed reduce all CLL anomalies,I have seen and am back into the 'normal' parameters.Which as my oncologist will agree,is where you should be and is happy to be there,it's been a journey believe me,joint pain,waking up with some weird unexplained headaches,diarrhea,fatigue.I do believe this therapy works,you really do have to manage it properly though Definitely drink alot of water to see it through your kidney function,find the correct dosage that maintains your normal parameters, and adjust your diet to not cause reaction...I find alcohol and spiced foods to be particularly reactivate to ibrutinib.

[lilica955]

Hi everyone,

I'm too on ibrutinib and last night ,on my feet I saw a lot of petechiae. Someone else can give input on that? Thanks.

Regards!L

[AussieNeil Administrator in reply to lilica955]

Lilicia, Ibrutinib slightly impacts the clotting process, so small capillary bleeds causing petechiae are fairly common. Provided your platelet count is adequate and unless the petechiae start becoming far more extensive and significant bruising starts occurring, I wouldn't be too concerned, but by all means ask your specialist if it worsens.

Neil

[Temida in reply to lilica955]

Hi, Lilicia I read that this is common complication, 20% of patients have it.

Keep well❤️ Temida

[lilica955]

Thank you very much, Neil! YOUR answer is important for me! I'll check tomorrow my CBC!

Have a nice day!

Lilica

[Hotrods4me]

I see some of you have had some very good results right in the beginning. During my first probably 10 days of starting ibrutinib I got so sick I was in the hospital my white count was 132 when I was put on the drug and in the hospital it had gone up to 302. Diarrhea was absolutely terrible. Was told that is normal for counts to go way up like that and then they stabilize and start back down which mine has, then over the past year and a half the last blood test it was down to 16. That simply is using the white count as a guide without going into all the other numbers that everyone knows are involved. Therefore what I say is good luck that's great for those of you that have had success right away.

[mja511]

I've been on Imbruvica for almost 5 years (I am P17 deletion) For me, it took about 4 months before I started to see results - so be patient. I still work full time - and prior to Covid shutdowns - never missed a chance to travel. I was fortunate that I had just a few minor side effects early on - but now - none. I wish you well with your journey.

[Artist123]

Hi Temida

I started Ibrutinib late July this year. My experience so far has been amazing. The first month was rough with swollen joint pain and other secondary infections. But once that passed, I feel like a million bucks! The numbers do take time to head in the right direction, but its heartening to see that happening every month. My spleen was quite enlarged as well as bulky nodes. Those all disappeared within a week or two! I never had any nausea or diarrhea, but drink a TON of water and stay active like most folks here suggest. I take ibrutinib before bed, so that may possibly alleviate nausea, but everyone is different. Best of luck to you in your journey!

[Temida in reply to Artist123]

Thank you for your advice! I was drinking a lot of water with lemon today and nausea was much better. I tried to be more active as well.

Regards and keep well, Artist

[Artist123 in reply to Temida]

I drank so much water that first month I thought I was going to float away! And I (wasnt) a water drinker. Was hard to consume so much, but I have to believe that it helps to flush your body of all the bad stuff that's being released when you start ibrutinib. Still drink a ton, but not like I did that first month.

[lilica955]

Thank you,Temida!

I hope me ,and all of us will to be ok!

Best of luck to you!

Lilica

[Miller1960]

Hi Temida

Ibrutinib worked incredibly fast for me, my enlarged spleen shrunk within a week unfortunately it worked so well that my body couldn't handle the detox at full dose. After adjusting my dose I've never looked back.

My numbers are almost in normal range but the important thing to me is I have my life back.

A bit of a new normal but I'll take it.Don't like the petechiae especially when I get it on my face but really that's it.

Take care and good luck with your Ibrutinib journey.

Miller1960

[Temida in reply to Miller1960]

Thank you very much, Miller! I can’t wait to be healthy again and have huge plans for the future. Thank you for encouraging words

Temida

[larry54]

I started on imbruvica in 2017. Had a lot of side effects that lasted about 5 months. This medicine in a life saver.

[deblen in reply to larry54]

Are you still taking it. Or is it a life long dose

[larry54 in reply to deblen]

Yes I am still taking it. The side effects are for the most part gone. Like I said, this medicine was a life saver for me. Imbruvica's side effects are not the same for everyone. I did suffer for the first 5 months that I was on it. I almost gave up on the medicine. Iam very glad I didn't. Best of luck in whatever you deside on.

[deblen in reply to larry54]

Thanks

[Hidden]

The initial improvements come quickly. Probably the first 2-3 months have the biggest changes.

[eliwolfson]

Good luck with your Imbruvica experience. I am also a very active person. I play tennis, swim several miles a week, and bike ride. I was ok for the first five months, and then I experienced significant side effects, and I had to stop the Imbruvica. I hope you do better than me, and my advice is to keep track of all side effects, and of course, let your doctor know.

[2017cll]

Hi I to start Ibrutinib recentely and on the first week big improvements with some side effects but that is ok if they not taken over your life.

[lilica955]

Shortly after the first week of ibrutinib,my WBC incresed from 70 to 186 (x1000),but the lymph nodes were greatly reduced,some disappeared. Hb is 10,2 and PLT are 101.Can I consider that medicine works for me? Any thoughts about it ?

Thanks for all your comments!

All the best,

Lilica

[Temida in reply to lilica955]

Hi Lilica, it is written in SmPC that initially your WCC will rise, up to triple and after that they start dropping. So don’t worry ❤️

Regards. Temida

[Temida in reply to lilica955]

Hi Lilica,

I had my blood test and WCC have grown from 100 to 200 000. I had problems with hemsyomas deep in the muscles. But this week all side effects ( nausea, headache, dizziness) settled and I’m experiencing terrible muscle and joint pain. But results and spleen are improving Everything looks promising Good luck to you ❤️

[lilica955 in reply to Temida]

I'm glad the results are promising! Let's hope everything goes well for all of us!!!

Best wishes !🤗😘

[Sepsur]

Massive changes for me within a month 😊

[lilica955]

Thank you for your prompt reply,Temida! Yes,it is corect,WBC incresed shorty almost 3 times. I hope that is a good sign! Thanks again for empathy and good thinking!

Regards!

Lilica