This may be of interest to CLL patients: Patient Power, a US based patient support site, is holding a Webinar, Saturday 28th March, 16:30 Webinar Saturday 28th March, 16:30.
The full descriprion is below. You will need to register in advance, but registration is free. You will also be able send questions to the experts in advance.
Please remember treatment options discussed will be those in the US, so they will not necessarily be available in the UK. And they may refer to support procedures in US not here. However, I had a chat with the founder of Patient Power, Andrew Schorr, who confirmed that there will be quite a lot of overap with treatments here e.g. ibrutinib. And you will also be able to quiz the experts on cutting edge research. (I have known Andrew for years as we were both doagnosed at roughly the same time and our CLL story has run in parallel, with a few interesting similarities.
Event Desciption
Join us online on Saturday, March 28th to hear from chronic lymphocytic leukemia experts and patients.
Powerful new approved medicines are now available for chronic lymphocytic leukemia (CLL) treatment - with more sensitive testing than ever before! As new combinations are emerging to help patients survive and thrive longer, experts will help you sort out all the new research and therapies in this increasingly positive story of treating CLL. Are one of these approaches right for you right now or in the future? How can you talk to your doctor about determining the right approach?
David, I donât know how you find all this information. It is always interesting to hear how another country treats especially CLL patients. When I was diagnosed with CLL in 2003 it was December so when I wrote Christmas cards I told a friend in California and she sent me a card that crossed in the post and she had also been diagnosed with CLL. She was treated immediately whereas I was put on watch and wait. What a coincidence with you and Andrew as well.
Hi Erica, I was diagnosed in 1997 (I can hardly believe that myself!) and at that time there were few online sites available. So it is interesting to compare the situation now with then. I remember desparately searching for information the day after I was diagnosed. I only found one chat list, and it was in the US, an organistion called ACOR (Association of Cancer Online Resources). In those days everything was basic text, but they used a platform called âlistservâ and one of the lists was CLL. So I signed up for that and it was there that I met so many lovely, encouraging people, just like on this list. That list still exists, and I still get emails. Eventually (I think around 1999) a separate UK CLL list was formed, and so then it was nice to communicate with CLL people in the UK, and they eventually became the âUK CLL Associationâ. They hold regular meetings though I only attended a couple shortly after it was formed. You can now find them on a site called âHealth Unlockedâ - they have lists covering just about any health issue you can think of. One of the listserv participants (the US one) was Andy Schorr, and he took it further by setting up Patient Power. To say he took it a step further is an understatement, he turned it into a vocation. I will probably suggest to Bloodwise doing an article on resources available for the website. There is so much now for patients which is fantastic, though of course in the digital age information overload can be an issue. But I would go along with the Patient Power slogan âknowledge is the best medicineâ. I will always remember how comforting I found that CLL list in the first days after my diagnosis. Though there were also some pretty sad stories.
Hi @DavidAmbassador thank you so much for sharing these!
I hope you are doing well? As you say, whilst there might some information out there that may not apply to processes in the UK (and itâs great you made people aware of that) we do really welcome you all to share resources.
If youâre happy to, I can definitely share your feedback with the team?
Hi @SuBloodcancerUK Sorry I was late to pick up on your message. There should be a transcript (or possibly even a video of it). I will look for this and send you the link, then happy for you to share it.