patient's story -what happened next?

[romarin]

I found this post on the CLLSA site (I am confused as to how it connects to Health Unlocked...) but it was a very encouraging story about progress and improvements with Ibrutinib and I would love to know how this patient fares now.

cllsupport.org.uk/patients-...

Thanks...

[Cammie]

Romarin

This story is on the CLLSA website which is the sponsor of this community on health unlocked.

I believe Hairbear would be able to update you?

Geoff

[David73]

I like this article particularly "I have had minimal side effects but it is difficult to say whether some things are normal ageing eg the frequent need for an afternoon sleep (impossible while walking the Cumbria Way!), leg cramps and exhaustion most evenings."

[Myrddin]

Inspiring story for those with some energy - my kind of walk.

As has been said the cllsupport.org.uk is the website of the CLLSA a UK charity and whose members administers this community.

Hairbear was the driving force behind getting this community up and running and also the major updating of the main site. We will be posting an anonymous survey in the next few days asking for feedback to find out how well the site works for the many and varied visitors to the site from the UK and around the world: patient, family, friends, supporters, health professionals.

[HAIRBEAR_UK Founder Admin]

Thanks for reminding us of this inspiring story by Tina. This was published in the winter/spring 2014/2015 CLLSA newsletter The newsletter articles are hosted on the CLLSA website cllsupport.org.uk/newslette... . If Tina is a user of the CLLSA on-line community here on HU which serves to encourage sharing of information and peer support between people with CLL we may get an update here. Maybe Tina will be able to update us in the next newsletter?

CLLSA newsletters: cllsupport.org.uk/newsletters

The CLLSA on-line community here is integrated with the CLLSA website, Our on-line community here is a separate site and is an on-line meeting place that encourages collaboration, learning and support among the community that live with CLL.