My husband has CLL (diagnosed 13 years ago, on watch and wait for the first 9 years) and has been on the Flair trial, taking ibrutanib since June 2016. At the moment his levels are good but in August 2016 he had fungal pneumonia and this time last year had pneumonia again. He also had to have a pleural effusion in July 2019. Having CLL obviously affects his immune system anyway plus he has had these pretty desperate complications.
I write this as in the current awful situation with the Covid -19 virus he, like many others is obviously particularly vulnerable. As such we thought he would have a letter or a message from the government acknowledging this as we know others who already have.
I wondered if others on this forum know what is happening or have heard anything themselves. Surely just because his blood test taken three weeks ago showed his levels to be encouraging they won't disregard him?
So glad we have this forum to turn to, keep well everyone, take care.
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Poohey
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I haven't had anything either but we know what we need to do thanks to this forum.
These sites might help though.
This is what the digital nhs says:
"To compile the initial list of nearly one million vulnerable patients it was necessary to combine routine NHS data from multiple sources. In this extremely complex process, our priority was to ensure that we got vital information to vulnerable patients as quickly as possible.
Our aim has been to contact the most vulnerable people as soon as possible, with the risk that we would also include a small number of less vulnerable individuals. Most importantly, we are striving to avoid overlooking any individual who is at genuine risk, which is why we have put in place additional measures to identify as many of the most vulnerable people as we can, working with general practitioners and hospital specialists." More here:
I to am on ibrutinib and have had 3 text messages saying to .
NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.
NHS Coronavirus Service: Do you know how you will get your medicines while you are staying in your home? You can order repeat prescriptions online via the NHS app or your GP's online services.
Thanks so much, gutted that they feel we shouldn't go out for a walk. We live in the countryside and see virtually no one, obviously keeping a big distance if we do.
If you haven’t received a letter or text and you have CLL whatever the stage then this will have been simply an error. A giant computer operation like this is bound to miss some people out. We can safely assume that the intent as expressed both by statements from blood cancer charities and the government that all patients with blood cancer at any stage should follow the advice and were intended to get the letters.
Whilst it is true that some of us are no doubt at higher risk than others it seems the reasoning is that all of us are at higher risk than people without a disease of the immune system.
By the way there is evidence that people with CLL can indeed recover from COVID19 (a case from China has been reported).
But to remove entirely the concern of what will happen if we get COVID19 we are encouraged to shield and in an ideal situation our family members would do so as well. Clearly if you and your family members remain at home you won’t be able to catch the disease. There is advice about shielding yourself from family members because for the first fourteen days after self isolating it is still possible someone might be incubating the disease and because the assumption is that in some households it may be impossible for the whole family to shield.
Personally I am genuinely feeling less concerned about catching an illness at the moment than I am usually because I’m not at risk of catching the flu either since I’m self isolating.
For those of you who need to prove something to your employer I would have thought that a copy of perhaps the Bloodwise or CLLSA statement, the government statement from online, and a copy of your diagnosis statement would be more than sufficient.
If that is not sufficient then a note from your GP stating that you have a blood cancer and so would be covered by the guidance may help. GPs may not be fully aware of how they can influence the production of these letters or texts but I believe there is some kind of system where they can point out that someone has been missed.
But if you have not got a letter or text please don’t assume that someone has made a clinical judgement that your specific case means the government advise dose not apply. The advice is blanket to cover everyone and so whether or not the computer system did what it was designed to do or not should not be taken as of any real significance to our clinical situation.
Time to settle in for the long haul of staying at home, and find things to do that will amuse and distract us.
I’m going to find some TV series on one of the steaming platforms to get into, and continue my mindfulness meditation, listening to music, a bit of writing, video calls with friends and family (including those who are in the same home!) and I posting a bit on my blog.
I wake this morning feeling that personally calmer and more at peace than I have done for a long time. Though of course I’m concerned for what is happening in the world. I intend to switch off from the forums and not read or watch any news until this evening now.
Thanks so much for your reply. We have of course been taking every precaution. However we have so far gone for a daily walk for exercise. We live in a village surrounded by countryside and have only very rarely come across a anyone else, if we have we've kept our distance. Also we are sole carers for my husbands mother who lives about eight miles away. So far we've only gone over to her once as she is well supplied with food. Her memory is not good so we call her several times a day and remind her to eat etc. Otherwise she is ok, she's frail but capable.
I see that the recommendations are to not go out at all, which will scupper both these activities. The walk has stopped us going stir crazy!
No, still haven't. I think it's an admin thing as a young friend of ours, currently undergoing chemotherapy hasn't received anything either. But I have read the guidelines and peopl Pe with leukaemia are definitely included ( having to be 'shielded') and have decided for now to not go out fir any walks. Have to do them round the garden instead!
Reading various reports I think the virus will peak around now and for the next week it's imperative not to go out of your front door. If, like China, this is the case then after that we may see numbers start falling. I'm only passing in what I've read, I'm no authority on the subject!
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Diagnosed at 33 with cll and have discovered I've had it from early 20's
Advice about flu vaccination please.
Re: Extremely High White Blood Cell Counts (Over 150,000)
Still on hold for stem cell transplant
Extremely scared and anxious
