I’m not doing too badly thanks @Erica Still feeling rough but improving a little each day. I didn’t need the antivirals on offer but kept in touch with the nurse at the CMDU who was super helpful, despite the fact that I clearly wasn’t seriously ill.
It’s strange because I’ve spent more than 2 years worrying about getting this and then it happens and, well, so far so good! Obviously I’ve been lucky getting it when the current variant is less severe but you also don’t know what resources your body has to fight it, whatever your condition. My wife, who has no underlying conditions as far as we know, has followed a similar path with the illness.
Thanks for your support. I hope you are keeping well.
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@davecpep Good to hear you’ve beaten off the burglar, I trust any missing possessions will be recovered soon. I can empathise with your thoughts on “worrying” there is a side to me most days which says at least if i get it and pull through i can move on with my life ie there may be a positive to this scary prospect. Unfortunatly I seem conditioned to the cautious approach perhaps until i am better informed more specifically on outcomes or perhaps miraculously the Government U Turn on Evusheld. 
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Hello @davecpep, really good to hear that you are coping ok with COVID. Really happy that the CMDU nurse was supportive. Wishing you and your wife continued improvement. Take Care Gemma
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So, 8 months of being very careful following my stem cell transplant, I tested positive on Sunday. My lymphoma nurse at UCLH was awesome (as usual) and I received Paxlovid by courier today. I feel ok but my chest feels congested. Would be grateful if any of you would tell me your experience of Paxlovid e.g. when they started to feel ok and how long to test neg? Much thanks, Paul
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Look after yourself @Paul and so glad your UCLH nurse is awesome,
Be kind to yourself and please let us know how you get on
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A quick update - I tested negative yesterday (13 days in) and though I still feel rough I am gradually improving. I didn’t need the antivirals, but received great telephone support from the CMDU in Blackburn. If it can be done well here … Thanks again for the support.
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Really pleased to hear you were well supported @davecpep and that you are on the mend. Continue to take care, Gemma
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Havn’t accessed the site for a couple of months…
Have just done a couple of hours review.
Two points to make which I have not seen discussed.
- I had Covid on my first big social outing of the last 2 years, back on March 20th…
The letter inviting me for the 4th dose arrived the same day.
obviously ignored it for a month.
Eventually, after organizing it all myself (I am Chronic lymphocytic leukaemia (CLL) W&W), I was given Sofinatrab? (an MB ag), by infusion in hospital. It went extremely well and I felt better immediately. However it still took 11 days for me to test negative.
Decided to do an Antiviral test at end of April. I had 'scores’of 0, 1.6, 18.6 before with each dose of vaccine, and wondered whether I had developed immunity. Well this time i was off the scale. (>2600).
So should I now have the 4th vaccine?
Contacted my GP and she contacted the local MDU, who came back with - leave it for 3 months as such a strong combined response…
So do I go ahead with my 4th vaccine? GP suggested a further Anti-virus test and if I was still over 500mg/l - then to wait a bit longer.
Decided to take her advice and will book another test (Lloyds chemist each time costing £50).
Will let you know the result.
- Reading thru the above forum I discovered the link as to the number of antivirals and nMAB’s given in the NHS, over the last few weeks. .
Very interesting…
In it it states that due to a human error on or about the 25th of Jan over 42,000 Chronic lymphocytic leukaemia (CLL) patients were omitted from the list of people who were considered for further treatment in the event of contacting Covid.
I am guessing that those were the people on W&W (can anyone confirm?).
They claim that they were corrected by Jan 29th.
However it was late Feb before I received my notification and my PCR test arrived a bit later. This probably explains why an awful lot of people reporting on here failed to receive their notification on time.
By the way does anyone know the total number of Chronic lymphocytic leukaemia (CLL) patients in the UK and is the W&W a very sizeable proportion?
Hi @Paul I have been thinking about you and just wondered how you are doing?
Take care of yourself you and your body have been through a lot
Sadly the only right we have is to be considered for treatment… So to be turned down is considered ‘in order’
@Paul Sorry to hear your story. I am also a patient of UCLH but having been transferred whilst in lockdown haven’t needed to go there yet. Interested to learn more of how UCLH got involved after positive test. Did you send a PCR test and were contacted by CMDU or ? I have stayed safe for over 2 years but be good to know your experience of the system.
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I have read that people are not automatically being contacted by CMDU after logging lateral flow tests online.
Your own wise advice seems to suggest contacting 111 GP or consultant team straight away after testing positive not to wait for the phone call which they are led to expect.
The Government seem equally confused in their responses to questions on the matter by Lord Mendelsohn .(Government Policy).
They refer ambiguously to clinical coding identification.
As they do not have a list of elligible patients and have acknowledged this fact. What they appear to have done is send out automatically PCR tests to those identified by computer search as being in a cohort back in December last year.So the coding of an elligible disease was perhaps matched to each hospitals patient database producing the letter. This may well not be up to date. This did not result in a list of actual people by way of a database with names and addresses it was an automatic process.
It’s assumed however that if you did get a PCR kit and if you send that PCR test off and test was positive you will be contacted as it contained a barcode specific to you and no need to log online or call 119.
However what is not clear is how the process works since they changed their advice and began accepting lateral flow tests as these are not personal. You are told to log on or ring 119 if positive and provide personal details but what are these compared to?
To avoid any further confusion and perhaps some having to waste 24 hours would it be possible for BCUk to seek urgent clarification on what the process of identification involves and specifically the nature of 119 in that process. The later appears to act as the receptionist for the CMDU but clearly this part of the system appears wanting. The Government have acknowledged it’s not “always” possible to digitally identify people hence no phone call, If they could enlighten potential patients as to how they are identified surely it would assist in the process which is ambiguous to say the least.
I look forward to hearing of a successful clarification.
People without comprised immune systems develop additional antibodies after having Covid for a period of several months. It’s likely a question for my care team but if my immune system remains compromised after a stem cell transplant, it seems unlikely Covid would stimulate a significant antibody response. Has anyone been advised about this issue?
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Good question @Paul and I think that you are right it might be a question for your care team.
Please let us know what they say, take care of yourself.
Had long chat to my consultant today her advice don’t bother with 119 contact 111 or your team or better still both. She is on front line at UCLH and CMDU and says the referral system is good if you get the right support and her patient’s are getting positive results. As for the government and its policy or the system in place etc can’t print that. 
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I did hear of person who tried 111,119 and GP and got no where and was advised to use the PCR test instead as she would then get the correct response. This is what she had to do but nhs advise is not this. It does seem odd that we were sent pcr tests for emergencies but when we use the lateral flow reporting system we aren’t identified. This is a nhs digital responsibility from what i read and if you had been sent a pcr you should be on the list for a call. Obviously this didn’t happen for me and it didn’t for lots of others either.
I have sent freedom of info request to NHS digital to try to enlighten us all further. Will keep you posted.
Calls for UK to stock up on Covid drug that slashes illness by 80%
Another article in the Daily mail today. At least it’s keeping it in the news and maybe eventually someone will listen.
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I enquired lately in relation to the CMDU and the lack of clarity over procedure and wondered whether you had been able to obtain any further information?