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angry that the clinicians and doctors will be treating patients with one hand tied behind their backs when Ibrutinib is withdrawn from the Cancer Drugs Fund list in a few weeks.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.
David
Written by
Haileybury
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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.
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.
I had large pleural effusions in both pleura which were caused by the CLL 3 years ago. I was hospitalised for various tests to find the possible cause, and after two weeks of testing it was decided that it was definitely due to the CLL. This was the reason that it was decided to commence treatment with a chemotherapy ( Bendamustin/Rituximab) because in actual fact my blood counts were not too bad yet . I did have a large number of small and medium sized lymph nodes in the chest area and these were the cause of the problem as they pressed on the lymph ducts. In total I had 6 punctures. At first large amount of chyle were removed and then there was less but it did not go away. When I finished the chemotherapy in April 2018 there were still effusions even though the chemotherapy had been successful. I had however been warned by a pulmonologist that this condition can take a long time to clear, and was hopeful that it would clear over time. And it did! I had a scan this June which showed that there were no more effusions, although unfortunately the lymph nodes in the chest were growing again. My haematologist recommended starting with treatment with Ibrutinib mainly to prevent this problem of chylothorax recurring at a later stage. I am now 3 weeks into taking Ibrutinib and am much encouraged by your message!
I hope you can clear the effusions as well! I don't know this for sure of course but it somehow seems common sense to me that if you allow the body to move and do gentle exercise, it has to be good for clearing this condition. I have walked and done Qiqong and Yoga.
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!
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