The following could be of interest, it is a free event organised by Leukaemia Care
Webinar details, sent by Leukaemia Care:
Date: Wednesday 8th April 2020 Time: 3:15pm Topic: Coronavirus and chronic lymphocytic leukaemia (CLL) Host: Leukaemia Care and Dr Chris Fegan, University Hospital Wales
How do I join the webinar?
The webinar is being hosted on Zoom and Facebook, meaning you can chose a platform to suit you. Zoom is the best place to ask questions, but if join via Facebook we will try and get all the questions sent to Dr Amit Patel, but please expect a delay.
Information on how to join via Zoom or Facebook is below.
Watch via Zoom
To join via Zoom, all you need to do is register your attendance before the webinar starts. Once registered you will be sent an email with a link to click on the day at 10:15am.
Watch via Facebook
To join via Facebook, all you need is a Facebook account. Once logged in head to Leukaemia Care’s Facebook page at 3:15pm on Wednesday and find the live video (it will be at the top of our feed).
Due to high demand we have increased the capacity of attendees. If joining via Zoom please make sure you register your attendance.
This webinar will focus solely on the impact of coronavirus on blood cancer patients, including:
What to do if you think you should be shielding but haven’t received your NHS shielding letter
The support that is available from government as an extremely vulnerable person
The support Leukaemia Care and other charities can provide at this time
Information about potential changes to treatment, appointments and other aspects of your care
Please note, we will not be able to give individual medical advice. You will be directed to your own clinical team if we cannot answer your question in the webinar.
Due to the large amount of registrants we cannot guarantee that everyone’s questions will be answered, but will try and do our best in the time frame that we have.
As you say there is a web conference going on at the moment online run by leukaemia care and CLLSA. It will be something that you can watch now or later.
Can I ask blood cancer uk to consider something similar? We could do an online support group type format.
Couple of key points from the conference call.
The top CLL experts are reiterating again that everyone with CLL should be shielding right now. This video and the document from cll experts can be used for any still having different advice from non experts.
The expert underlined that once everyone you live with have all been self isolating at home for seven days or so the risk of catching COVID19 is zero. So the safest approach is just to make sure not to get the disease.
We were warned that it’s likely we will need more than twelve weeks of total isolation. If there is a vaccine even if we don’t personally respond to it “herd immunity” will protect us at some point
It may often be ok to delay treatment for some patients with CLL. Some patients will be not treated until this passes but if you urgently need treatment this should still be given. Crucially there is a Special free patient access scheme available in the uk right now for acalabrutinib first line from the pharmaceutical company. This scheme may not be available from every site but the expert sites are putting people onto this at the moment rather than FCR. If treatment is important for you even right now you should be able to get referred to a site that is doing this. The rational is that this will be on average much safer than FCR or venetoclax right now. As usual you’d need to check with your own team about what is suitable for your personal situation.
There have been some UK patients with CLL even in watch and wait who have got COVID19 and been admitted to ITU.
That was an excellent summary Adrian, you covered everything well. Just checking my notes to see if I can add anything, but I do not think so. However, the CLL patient contributor, Nick York, made a good point that all CLL patients have in some respects been social isolating ever since they were diagnosed or if not, at least aware that their immune system is not working perfectly)
Totally agree about Blood Cancer UK doing something similar. They gave a shout out to Blood Cancer UK (and 2 other organisations) for helping to promote this event: They had 500 people attending which is fairly impressive!
Thanks @Adrian and @DavidAmbassador, yes, I thought that Dr Chris Fegan was a brilliant, very practical speaker and the webinar was very well run by Leukaemia Care and well worth watching.
My lasting impressions were:
If you have ever been diagnosed with CLL at any stage, no matter if you are having or have had and treatment ever and no matter what your blood tests showy and whether you have received a letter or not you and your family should be following the 12 week isolation advice.
Apparently once you have been diagnosed with any stage CLL it means that your immune system is compromised and no matter if you have treatment or not and how ‘normal’ your blood tests appear, it will always be compromised to a degree.
He stressed that if you are currently on treatment or need tests to contact your medical team. They will advise on the way forward and this could involve taking a break from treatment or even changing drugs. However if you have any concerns or questions do ask them, so you can understand their thinking process and agree the way forward.
He stressed how virulent this virus is and if you are isolating at home it can only get in by someone or something coming through your door.
I know I have repeated some of @Adrian points but it shows what was made so clear to me. Anyway if anyone feels my impressions are not correct, please feel free and we can discuss it.
Well only if their doctors told them they were immune compromised… One major issue coming out of this is some local haematologists have been telling their CLL patients they aren’t immune compromised and even that they shouldn’t have pneumonia vaccines or follow the covid while icing which are recommended by the real specialists. I think we need to get a proper list of true specialists available so all patients can go to good CLL expert doctors. And this may well be the best thing for other blood cancer patients too (ie to be seen by a true specialist in their disease).
Hi welcome to this community forum, Yes, a brilliant webinar, and a great speaker. as @Adrian says our problem is that different haematologists, with different medical CLL patients can mean different advice. How are you doing and feeling?