Hi
I have Essential thrombocythemia (ET) myself and its under control but my sister has been diagnosed with Chronic lymphocytic leukaemia (CLL) but has a complication in a rare gene that is affecting her treatment. She has had two different treatments but neither seem to have done anything for her. She recently had horrendous nose bleeds followed now by a high temperature and now in her blood works an infection. She is in hospital at the minute since monday on antibiotics infusion she’s also had platlets and transfusions. She and her family are meeting with the consultant today but wondered if anyone else has information or help about rare gene problems.
Thank you
Caroline x
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Oh @Carly07 it is good to hear from you again, but very naturally you are very worried about your sister.
It sounds as is she is in the right place.
As it is now Friday evening I expect she and her family will have had their meeting, so I await hearing how she is and the meeting went.
Others may be able to share their experiences.
Your sister is very lucky to have such a caring sister as you.
Be very kind to yourselves and look after yourselves and please do keep posting and also let us know what you have been up to.
Hi Erica
Thankyou so much for your kind words. Unfortunately it wasn’t good news. It is hard to grasp and understand the complexities of her condition and the affects this rare gene is having. The prognosis they’ve said isn’t good and the current medication they’ve said is not working. The only thing they can do is keep giving her platelets and transfusion and may introduce another medication gradually. But she’s had so many bad side effects that its going to be so difficult.
Thank you again
Caroline x
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Oh @Carly07 I am so sorry to hear that it was not good news.
From what you say above it might well not be possible, but if a clinical trial is considered it is worth your sister and/or her medical team contacting the Blood Cancer UK Clinical trials team on 0808 2080 888.
How are you feeling after that news, because we are here for you to say how it really is for you, my thoughts and feelings would be all over the place and not necessarily logical.
Really be very kind to yourself and look after yourself