CLL Support Association
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Cll with thrush

Husband now going to start ibrutinib which was delayed as we had not received appointment for his has lung condition of plural effusion, Eventually received appointment to for 12th February when they will aspirate and seeing cll consultant on 4th March to hopefully commence treatment.

Still loosing weight although continually grazing all day, very fatigued and general lack of interest in anything then to top it all he has thrush in his mouth. Concerned this may delay treatment. He also has skin cancer with some areas requiring further treatment.

Feeling rather despondent at the moment, but good support from family and friends

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Do not give up Fanny, it is darkest before the storm. I have breathing problems and cannot sleep on on my back or in any prone postion. I was diagnosed with CLL nine weeks ago, and my lungs and throat are raw with chronic coughing. I am getting the Imbruvica and the work on my lung infection - they go hand in hand, and one not need wait on the other. In the same nine weeks I have been on two antibiotics and steriods as they try to figure this out. I just keep reading and pressing my primary and oncologist - by the way I have changed both in past four weeks. I am going to get what I need, be prayerful, proactive, and die trying. Also, if the Imbruvica starts working (it can be very fast over a few months) it can take pressure off the system to allow other regimens to work on the lungs. The doctors know a lot less than they will ever admit, and have their own biases, so we need to help them. Praying for you!

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Thank you, good to know someone else is in similar position

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Unfortunately my dear husband has departed this world. He went downhill rapidly after the ibruitinib which he started eventually in March had to discontinue adter10 days due to severe side effects.

We discussed all avenues between ourselves and our consultant and we agreed to not try any further treatment Ashish body was so weakened . He wished to be nursed him at home which I did but it was an aneurism that was the fatal blow. Was not expecting that at all but with hindsight the end was swift and he had been surrounded by his family all weekend as we knew the end was imminent.

Life is a little strange to say the least but I know he would want me to keep moving forward and as we used to like holiday s years ago, a photo of him will come with me everywhere I travel to when I am ready

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