Inhibitors Forever?

[andrewschorr]

Depending upon where you live, you may have access to a new "inhibitor" medicine like ibrutinib/Imbruvica. It knocks CLL back but not out. So do you have to take it "forever"? Here's what expert Dr. Michael Keating says: patientpower.info/video/do-...

[HAIRBEAR_UK Founder Admin]

Andrew Please when you share information here can you share it freely and not force our community members to have to join another group before they can access your broadcasts or your current website information

[Hershey in reply to HAIRBEAR_UK]

Hairbear,

I do not understand why registering with another group is a problem. One can still just follow in this group and then see the information that is shared by Andrew without having to check in or be active in the other group. In fact, I find it easier to follow the daily newsfeed here only. When others like Andrew post notice in the newsfeed of a new item of interest I just click the link to Patient Power so I don't have to peruse multiple sites daily. I actually find it very helpful.

[Hidden]

I'm confused as to what, if any, CLL specific drugs, have been left on the 'list' in England (NHS)? Or is there just a one size, fits all 'generic' chemotherapy? I know that, some drugs have been removed, but I'm not sure if there are other drugs available.

[HAIRBEAR_UK Founder Admin in reply to Hidden]

Hi Green Eyes

In the UK during 2015 we have seen a a change in how CLL is treated; with more new treatments being approved by UK regulators and made available to NHS than ever before. Most importantly there are many more in the pipeline and appraisal process and this will increase the options our clinicians have to treat us.

Ofatumumab plus chlorambucil, obinatuzimab plus chlorambucil, idelalasib plus rituximab and Ibrutinib were added to a growing list of treatments available on the different UK NHS to treat CLL patients not suitable for or relapsing from other treatments

Ibrutinib is now being appraised for UK NHS availability this year.

Last year Idelalisib and Ibrutinib were added to the England Cancer Drugs fund listing making them available to England patients Iidelalisib will be removed now it is NICE approved and available through England NHS. Bendamustine for relapsed CLL patients was removed from the England Cancer drugs fund list but clinicians do have other routes of access, Wales, Northern Ireland and Scotland do not have Cancer Drugs Funds so they were unaffected by this.

NICE and CDF processes for assessing and approving new treatments for availability through England & Wales NHS is currently under review and a consultation process is underway. The NHS plan is to combine the two into one process, this may or may not assist us gaining access to new treatments more quickly, the high cost of new treatments in a system providing social healthcare is our greatest hurdle. .

In Summary there are many more NHS approved treatments now available to treat CLL in the UK than ever before and there are many more in the pipelines . When you add to this improved prognostic testing and the number of new and experimental treatments available in a very large portfolio of clinical trials managed by our world leading clinical research teams here in the UK, It is possible to see that the era of personalised medicine to treat CLL is now a reality here in the UK, as more new treatments for different groups are approved this will improve further.

Have a read of Professor John Gribben’s slides from his talk to us at our last CLLSA meeting at Bart’s in December to gain an insight of how CLL treatment is changing here in the UK and overseas.

Snip: From Prof Gribben's summary

•A large number of new agents have been approved recently for CLL treatment – obinutuzumab, ofatumumab, ibrutinib, idelalisib

•There is a perfect opportunity to tailor the treatment approach to the needs of the individual patient based upon their fitness and on the presence of resitance/mutations

•Specific side effect profiles with different agent have to be consdered

•A new approach to management is already here

cllsupport.org.uk/sites/cll...

Nick

[Hidden]

Hello HAIRBEAR,

Thank you so much for taking time out, to give me such a comprehensive answer!

Kind regards.

[Hidden]

I can't wait for ABT 199 (venetoclax) to be approved. It seems this agent has the ability to shut down the most resilient of the CLL cells especially those hiding in the recesses of our nodes and marrow. Ibrutinib is good at chasing most of the CLL cells out of nodes and into blood where they are easier to kill. Ibrutinib can kill those cells and the monoclonal antibodies can as well. Chemo is good at going after cells in marrow but at the cost of toxicity. So venetoclax may be the drug that in combination with others gets us to a limited time on treatment and hopefully deep and durable remissions.

[StupidPlanet]

Thanks Andrew. I watched other recent interviews with Dr. Keating, but would have missed this one. Thanks for sharing!

[shazie]

Thanks Andrew for all the hard work. When are you going to be in Bay Area? I can't wait to meet you in person. Warm regards. Shazie

[Parramatta]

Thank you Andrew for all the work that you do. I for one have been reading your

information and watching your videos for years and so you have helped me a

great deal in understanding this complex disease. Kindest regards.

[kebnekaise]

Thank you Andrew. I read all your updates. I am very grateful that you make a written text of the interviews.

Irina CLL Norway

[Janetfld]

HairBear Administrator,

I also agree with Hershey. I am very grateful for Patients Power. It is another source of information and does not appear to copy the format of Health Unlocked. It does not bother me to have to log in to see the video. There have been other post on this web site where I have had to log in to read a paper. No CLL information society can see all things and hear all things. I welcome as much information as possible and do not want to miss any updates from other sources because the post requires a log in.

[andrewschorr]

Dear friends on HealthUnlocked: about 90% of all the videos on PatientPower.info and ALL the videos on PatientPower.eu do not require any login. Many months ago we decided to require a login (free) for the latest videos - at least for the 60 days they are posted. This is our effort to further document our reach, make a case for sustained funding, and personalize content for community members. Now about 4,500 people have logins to the CLL center at patientpower.info/cll. Like with the login for HealthUnlocked or Facebook, people tend not to object. However, Hairbear, the administrator of this community would rather me not post links here to any videos that require a login on Patient Power. While I don't think it's the best policy, I will comply, if that's what the members want.

So...if you want to see the latest videos with experts that we acquire around the world be sure to be a member of the Cll community on PatientPower.info or PatientPower.eu. That way you will receive updates directly from Patient Power. But the links will not be posted here.

To be clear, my goal is never to present barriers to anyone getting information. It would seem a one time login is not a big hurdle if it means an organization can continue, over many years, to be a source of credible CLL information.

I welcome your response to me or Hairbear and I'll follow whatever is the policy of this group. For my American cll friends, we do have another channel on HealthUnlocked, "CLL America from Patient Power" that will continue to have links to the latest. I firmly believe all of us should seek out multiple sources of information, this channel being a great one. But check out the others too - including dear Brian Koffman's CLL Society. Knowledge is power and it comes to you from multiple sources.

[HAIRBEAR_UK Founder Admin in reply to andrewschorr]

Hi Andrew thanks for posting to explain why members have to join another community if they wish to watch the latest PP videos. My request for access was on behalf of people who do not want to have to join another community group to be able to continue to see Patient Power updates from our doctors. it is good news that Patient Power EU's latest videos from many UK and European Doctors and patients will not require this from us and will be shared in this group. To make things clear I would very much like our members to continue to receive updates from you and patient Power US here but was asking why people now have to join your community first.

I hope we can continue to receive notifications of latest updates from you and Patient Power here in this community and we are very grateful for these, even better if registration is not required and we can all continue to learn and disseminate information as widely as possible.

Collaboration and sharing of information is key to ensuring everyone has access to information. The reason for my request was to help make information sharing and dissemination easier to ensure it reaches as many people seeking it as possible. Of course an on-line patient support community group is a different matter; there is sensitive content and discussion to be protected. Since Patient Power have made it compulsory to register on-line and join their community to access latest information. Several members have let me know that they no longer access the latest Patient Power broadcasts as they are wary of joining another community and registering with another group to access information..

Our support community here is founded on sharing reputable information, education, support and best practice and we wish to ensure this continues and current information is freely available to as many as possible. Part of this is us signposting here and on our websites to partner's information which is important to provide a range of resources, opinions and experiences to help people with their journey a collaboration which should continue unhindered.

Thank you for clarifying your position and that new Patient Power US information requires CLL patients now join Patient Power . This is very helpful but it is disturbing to learn you set up a new Patient Power America community here on the HU platform a few months back for this.

Andrew this is an international forum which gains strength from it's international membership and our collaborations and combined support of each other, asking our community members here to join and start your new Patient Power America group and restricting your updates to the your new HU community only is not helpful for many of us. But may make things easier for others?

It is a shame you are dividing us at a time when our combined numbers and resources are most needed to improve access and information for people with CLL.

We are all in this together

Look forward to continuing this discussion off the forum

Best

Nick