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CLL Support Association
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Update but still not ibrutinib

Hi all

I know some of you are interested in my progress. NHS England are due to publish the results of thier review on Ibrutinib, but that's still not happened. The trial drug also is still not available.

In the meantime I was due in clinic today. However since Friday I have been running a temperature, unable to stay awake, sweats and headaches. Because of how I'll I felt I did not drive and arranged transport. As usual on arrival my bloods were taken and the phlobotamist noticed I was unwell. After taking blood he did my blood pressure which was exceptionally low 76 over 54. He took me straight through to the doctor. I was admitted immediately and am now now on a regime of IV antibiotics 3 times a day plus a barrage of tests. Hopefully it's just an infection. But it looks like I'm here till Friday may be a further 7 days if they find something.

Now whilst the CLL is not being treated it goes to show what hood hands I'm in.

Cheers

35 Replies
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Wishing you well Mick and I hope that your ward is cool !

regards

Colette

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All the best Mick, hopefully before you leave the trial drugs become available and you’ll finally get some good news.

Stuart

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Thanks. Red hot and no air con. But bucket loads of fluids going in lol.

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Think the heat is coming to an end soon ! hope so ! Can you beg a fan from somewhere ?

best wishes

Colette x

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Everyone's got one but me lol. Not staying on this ward long just waiting for s bed to come free. Thanks

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Lets hope its a better and cooler ward. After my recent Lymph gland removal at Kings they discharged me in the evening ! I was most annoyed as I was in the nicest ever ward ! brand new and with a TV that was free ! I can never work out how to use the ones you have to pay for !

C X

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Lol x

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Hope so as am here for a while. You take care too Stuart.

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So sorry to hear this Mick, you've really suffered these last few weeks and the heat doesn't help at all. I hope this gets sorted really quickly.

I can tell you to expect to hear news on Ibrutinib within the next day or so. I will be in touch as soon as I can.

Jackie

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Thank you. Look forward to the results. Thanks for the support.

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Thank goodness you had your consult today Mick and they picked up on how unwell you were.

Hope all goes well.

Best wishes,

Newdawn

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Thanks x

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Lets hope you get some good news soon mick. Wishing you a speedy return home along with the result you have been waiting for x good luck

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Thanks appreciated.

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Sorry to hear your unwell. I hope you improve soon.

Ann

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Thanks Ann.

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Do hope you have some good news soon, and are soon on the mend. I hated being in hospital when the weather was hot.

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I agree. Thanks

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Mick - I'm so glad you went in for your labs instead of just curling up at home because you didn't feel up to the trip! And good that the phlebotomist was paying attention. I hope you feel better soon and that you hear good news about the decision about Ibrutinib ASAP!

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Many thanks. Yes everyone on thier toes thankfully.

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Hi Mick

Hoping against hope that you will have the good news very soon and can start on the road to recovery. NHS England need a rocket up their butts. Would’nt it be good if one of those who made this decision were suffering likewise, then perhaps they would understand the effect of their ruling.

Wishing you good news soon, and hoping you soon feel better.

Bubnjay1

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Many thanks

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Hope you soon feel better Mick.

You could do without your anxiety being added to.

Hope you receive good news very soon.

Sue

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Thanks

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You really deserve some good news soon Mick!

Paul’s consultant mentioned Ibrutinib, in passing this morning, when she mentioned he might be heading towards more treatment, but it really was only in passing!

I guess she doesn’t know what she’ll be able to prescribe from one week to the next. Fingers firmly crossed.

Fran 😉

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Good luck

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Thank you. Even more luck to you.

😊

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Thanks Fran

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Sounds like you’re in good hands. Sending you healing thoughts.

Pam

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Thanks Pam

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It’s times like these that we know how strong we really are. Keep us updated Mick. Sorry you have to deal with the miserable heat along with everything else. Best of luck. Sally

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Thanks Sally

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Hopefully you will be feeling better real soon. You are in good hands. They can't send you home till you feel better.

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I'm sorry to hear that you are having all those issues. I hope this hospital stay will correct it all and you'll be back on your way to feeling well. Keep us posted.

Paula

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Wishing you the best. Where are you that there is no air condition?

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