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CLL Support Association
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My life with CLL

I was diagnosed with CLL in 2012. As I had delayed going to see my GP, the disease was quite well advanced and I needed to start treatment immediately. Given that I also had renal dysfunction, the proposed treatment was Bendamustine. This went reasonably well, but I did require three admissions due to adverse reactions to the treatment. In July 2012 I was said to be in remission. The next 2 years passed OK apart from what seemed like, continuous chest infections. In November 2014 I developed Ophthalmic Shingles. At a check up with my consultant on 10/05/15, I was told that the CLL was returning. Treatment would commence when I was clear of yet another chest infection. On 31/5/15 I was very ill, having developed Auto Immune Haemolytic Anaemia. My Hb count was 4, but there had been no sign of this on my blood count when I was seen earlier in the month. I was treated with 8 units of blood and a high dose of Prednisolone. The AIHA responded to this and I was able to begin treatment for the CLL on 30/06/15 with 420 mg of Ibrutinib. To date both the CLL and the AIHA have responded to this treatment. I have also commenced a programme of Immunoglobulin transfusions, to address the persistent chest infections as an alternative to antibiotics.

I am exceedingly happy with the care I have received from my local hospital. I am also fortunate to have a very supportive wife and family. My main concern at this point is the government's intention to remove Ibrutinib from the Cancer Drug Fund. Will the effect people like me who are already on this treatment?

4 Replies

newrider, I have been on Ibrutinib for a year. From what I understand, patients already on Ibrutinib will be allowed to continue with it after it is withdrawn. I also understand that there will be a changing scenario over the next 12 months. So, fingers crossed.



Hi newrider,

I agree with Haileybury and in a letter from my local MP Mr Conor Burns he includes " patients currently receiving a drug through the CDF (Cancer Drug Fund) will to continue to receive it".

You seem to have had a particularly rough ride and I wish you well with your treatment and for the future.



Thanks. It has been rough at times but I am reassured about the Ibrutinib as it appears to be working well and the side-effects are manageable. As for the Shingles, it has by a distance been the worst thing I have ever experienced.


1 like

Thanks Haileybury, that's reassuring to know.


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