Idelalisib & 17p deletion : Some advice needed... - CLL Support

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Idelalisib & 17p deletion

spud2212 profile image
3 Replies

Some advice needed!

I was diagnosed 18months ago at the age of 50 with CLL plus 17p deletion and have been on Idelalisib since last October (CALIBRE trial) I have tolerated the Idelalisib very well and have seen all my symptoms vanish leaving me feeling 100% healthy and my blood counts next to normal.

My consultant at The Christie has now raised the idea of having a mini-stem cell transplant using cord blood. He hasn't sugar coated the real outcomes of being either a cure, part cure with graft v host disease or death.

I know keeping with the Idelalisib runs the risk of Richter's tranformation and eventual failure of it.

I know there are several trials ongoing with combination of the newer agents but until my trial fails I am disqualified.

I really could do with some second opinions from UK professionals if anyone knows?

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spud2212
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

I would have a chat with Dr. John Gribben... at Barts ...if you are considering a transplant... he is a world expert in the field

bci.qmul.ac.uk/staff/item/j...

Third opinion,

Prof. Dr. med. Peter Dreger

Department of Internal Medicine V

Heidelberg University Hospital

spud2212 profile image
spud2212 in reply to Cllcanada

Thanks so much for that.. :-)

eggemma profile image
eggemma in reply to Cllcanada

Hallo. I am in the same boat. did you have good news from Prof. Dreger?

love to hear from you. kind regards Emma Fleetwood

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