IBRUTINIB - One week on

Amazing. No side effects and a visible reduction in the very enlarged lymph nodes all round my neck. I hope there will also be a reduction in the heavily CLL infiltrated fluid in my lungs which has been causing me such breathlessness and has stopped me playing tennis. Thank you, my Oxford CLL specialist, for getting me on Ibrutinib.

I'll post again when there is further progress to report.


13 Replies

  • Dear David, this is good news indeed. I hope that you continue to feel well. It is reassuring to all of us out there who may be facing treatment in the near future. Fingers crossed that the fluid in your lungs reduces very quickly. x

  • So happy to hear you are already seeing results. Wishing you continued success and look forward to reading your future posts!

  • I guess Ferrari is much better car than Honda. Just make sure you drink lots of water specially with your pills. Good news man, hang in there.

  • Thats great news and a good response in a short time, keep up the fight and hope your lungs clear up soon.


  • Thanks Elizabetha, nvp815, shazie and pitbull for your interest. Ibrutinib effect so far is very encouraging. Consultation and blood test in 10 days time.


  • Dear David, I'm so glad you're reaping benefits from Ibrutinib even after such a short time on it. I'm two months into taking Ibrutinib, thanks to my Oxford CLL specialist, and it's done wonders for me (apart from recent headaches which we're still trying to get to the bottom of). I'm back playing regular tennis so I hope your breathlessness will diminish to allow you to go back to your game. All the very best.

  • Hi, SycamoreN. Glad to hear you are back playing tennis. I may try an hour later this week or next. Really missing my 2 hours, twice a week, but I am aiming to get back on court ASAP. Couldn't manage it when I was on FCR, but I am feeling so much better now. Maybe we are both with Dr Schuh at the Churchill. I am not on a trial, are you ? I hope the headaches are getting better. I am very lucky so far to have no side effects. Keep positive and good luck.


  • wonderful news... keep up the good work and hoping you get back to tennis quickly !!


  • Hi David, Yes, I am with Dr Schuh and I'm not on trial but taking IB on compassionate grounds as I relapsed 18 months after FCR. My headaches are still persisting so Dr Schuh has taken me off IB for a week to see if that's what's causing them.

    Two hours twice a week of tennis - that's great! Is that singles or doubles? I haven't played singles since FCR but I do play gentle doubles 3 times a week. I hope you get back on the tennis courts soon.


  • Sorry to hear about the headaches. Hope they can sort it out for you. I only play elderly gentlemen's doubles these days. I'm 75 ! But having played league and club team tennis for many years, I'm able to carry on. I've played since I was 10. Gave up squash when I was 45 due to back problems but tennis isn't a problem fortunately (until my CLL).

    I hope you make good progress before long. If you feel inclined, I would love to hear how you progress as you are ahead of me with the Ibrutinib. All the best.


  • How are your headaches after a week off Ibrutinib ? After 15 days on Ibru, I have no appetite for food now and have lost a few pounds weight. My wife is doing her best with our meals. Maybe this feeling will pass. I shall be seeing Dr Schuh on Thursday without the many swollen lymph glands in my neck and elsewhere, which seem to have disappeared. So that's a PLUS.


  • Hi David, I'm sorry to hear about your loss of appetite. I hope it's not Ibrutinb related and will soon pass. My headaches have persisted , sadly despite being off Ib go 10 days so Dr Schuh as ruled out Ib as the cause. It would seem that I have a "head flu"???? as my temperature in the last 4/5 days have been between 38 and 39 and I've been bed bound. When my temperature goes down I'll be resuming Ibrutinib.

    I hope you get your appetite back soon

  • So sorry you are having a bad time. I hope your temperature goes down soon and you start to feel better. It's always a worry when one's immune system is down I have been told mine in non-existent. I am not sure if the FCR I had earlier has wrecked it permanently or if there could be an eventual recovery on Ibru. All the best to you. Keep positive.

    I am just going down to the tennis club to say "Hi" in a few minutes. Probably won't play this week.


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