IBRUTINIB - 12 months on

My improvement is truly amazing. My blood tests at 10 months and 12 months on Ibrutinib showed ALL counts in normal range. As far as my CLL is concerned, I feel very well. Am I in progression free survival ?

I still have a side issue of bilateral pleural effusions which continue to make me breathless on activity, but I can live with this and at 76, I am not going to be running around like I used to. Sadly, my tennis days are probably over due to my breathlessness, but I still go down to socialise with my tennis friends and they remark how well I look.

I feel angry that the clinicians and doctors will be treating patients with one hand tied behind their backs when Ibrutinib is withdrawn from the Cancer Drugs Fund list in a few weeks. It is such a successful drug and it is sad that it will no longer be offered to some patients here in the UK. I signed Dr Schuh's petition and have written to my MP.



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14 Replies

  • So pleased that it's gone so well for you David.

    Your story underlines why our campaign is so essential for other relapsed patients.

    Best wishes for your continued good health.


  • Hi David,

    How often do you check your Calcium, Potassium and Ferritin?

  • I am not sure this is ever checked. Why do you ask ?

  • Sorry for late reply. I will share my experience with Imbruvuca with all others soon and I will explain why all the above need to be monitored continuosly. You take care.


  • Great news David.

    We will keep fighting on the CDF !

    Keep in good health my friend.


  • Good news David. Very pleased for you. Peggy.

  • Excellent. Very pleased for you. My improvement under ibrutinib is the same. I've also written to my MP. May your recovery continue.

  • For those of us new to ibutrinib it is encouraging to hear such positive results, but for those who will be denied the drug it is terribly disheartening. I am from the US and do not yet fully understand the British Health Service.

    Pleural effusions are very uncommon in CLL especially if not in a late symptomatic stage, and they have many other causes. Have you seen a pulmonologist or cardiologist? This issue should be very treatable.

  • Thanks, Hershey. I had all the usual cardiac tests and my heart was found to be sound with no problems. The respiratory consultant and his team treated me with several lung drainages including a permanent (3 month) drain from which fluid was drained off twice a week until it stopped. It appears what fluid remains is in compartments which have developed in the pleura, are not easy to get at, and no further treatment is offered. So I am managing to put up with getting breathless which I recover from after a couple of minutes. Thanks for your interest.


  • That is wonderful news David!

    It is lovely to hear good news story's like your!

    Kind regards


  • David, you have been through a lot! I wish the effusions could have been completely eradicated for you, but am glad they are stable and you are feeling better.

  • David,

    I also had problems with pleural effusions. The fluid was drained two years ago and again last year. My consultant said that this is caused by CLL and when that is 'eradicated' the effusion will stop.

    I have been on ibrutinib for six months and apart from frequent infections my counts have really improved, just like yours. They are not perfect yet, but I noticed that my breathing is easier, I am not coughing so much at night, so the pleural problem is slowly disappearing. I wish you the same.

    Let us hope that the campaign will be successful and future CLL patients can also benefit from ibrutinib as we did!


  • Thanks, Sue, for your kind and encouraging words.


  • I'm now into my 12th week taking Imbruvica and I'm happy with the results.

    50% of my lumps and bumps have gone and the rest are slowly going.

    Bloods need sorting but appear to be going the right way.

    I really feel,for those who are about to be denied this drug.

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