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11th June 2020

CLL Support webinar with Peter Hillmen – 10 June 2020

CLL Support’s inaugural webinar began with an update by Chairman Marc Auckland.  The main talk was given by Peter Hillmen, Consultant in Clinical Haematology at Leeds Teaching Hospitals NHS Trust.  Peter began by summarising CLL and discusses what treatments and trials were available pre-Covid. Peter then goes on to discuss how Covid-19 has affected hosptials.  Finally Peter covers the issues of shielding, risks and immunity before answering questions.   The last talk in the webinar was CLL patient Paul’s lockdown story.  Questions that were not answered on the day can be found below, together with answers.

Questions from the audience at the webinar on 11 June 2020

We were unable to answer all of the questions asked on the day and we promised to answer as many as possible afterwards. We have grouped similar questions under various headings for ease of reference. More questions and answers will be posted soon.

Vaccines

Questions 1-5

How effective or ineffective do you think a Covid 19 vaccine will be for CLL patients.

If a vaccine is found do we know if CLL patients will be able to have it – know we have issues when it comes to certain “live” vaccines, will the Covid vaccine be classed as a live vaccine – thank you.

Do you think CLL patients be given priority for a vaccine when one is found?

Professor Hillman said the Oxford vaccine is a live vaccine, are there any trials going on testing synthetic versions?

Do you think the new vaccines that are being developed will be suitable for us CLL patients?

Answer

The vaccine developed by Oxford University is a live vaccine and it is important to note that it is not suitable for CLL patients. However, members of your family or household should receive it when available so that they do not transmit the virus to you.

Question 6

Is there any connection between the last flu vaccination and COVID and should we, as CLL sufferers be concerned?

Answer:

There is no known connection between ‘flu vaccinations and Covid-19. They are entirely different types of disease.

Question 7

Has any thought yet been given to flu vaccinations for CLL patients and those in their immediate household? These usually become available in October/November and are administered at our local surgery on a mass basis. Should shielding CLL patients accept an invitation to receive flu vaccine?

Answer

All CLL patients should have the latest ‘flu vaccination when they become available. It is likely that the prevalence of Covid-19 in the population will have fallen considerably by then and GP surgeries will also continue to take precautions. If in doubt, please contact your health team for advice at the time.

Question 8

As a newly diagnosed patient I have been given pneumonia inoculations.  We hear that Covid patients get pneumonia. Why doesn’t this inoculation protect from getting pneumonia with Covid?

Answer

There are several kinds of pneumonia and the standard for CLL patients is to receive Previnar – 13 and Pneumovax – 23 spaced some time apart. However, it’s unlikely – although not clear – that this will have any affect on the kind of lung conditions which are caused by Covid – 19. The Covid virus attacks the lungs in a different way and the result is a more difficult condition to manage.

General

Questions 1- 3

 On diagnosis l was informed that CLL, “was a good cancer” to have. Until Covid 19, l was never made aware of the threat of infection or secondary malignancies that can cause severe complications, hence I have never taken the flu vaccine. What is being done to better educate GP’s in the area of blood cancer and immunodeficiency?

 In comparison to the general population is it clear whether CLL patients are more susceptible to infection – also is it known whether, if infected, outcomes are worse, the same or even better?

 As well as CLL (no symptoms, stable bloods, watch & wait) I have cancer of the bladder (T1G3, TURBT last October, BCG started last December). Could they be linked in some way?

Answer:

CLL patients have a damaged immune system. Although this will vary between individuals, it means that CLL patients are more prone to infections and secondary malignancies. Any infections are more difficult to manage and the outcomes are less certain. It’s important that patients are aware of this.

The fact is that GPs will see very few cases of CLL and will not know of the problems associated with diagnosis. We support an initiative by our sister charity, Leukaemia Care, to educate GPs, but this will be a long process.

Question 4

 To what extent is Covid-19 affecting research into CLL?

Answer:

We understand that research into CLL is continuing, although some aspects, such as laboratory work will have been disrupted.

Question 5

I’ve read that Ibrutinib May offer some protection against Covid complications. Thought please? Thanks

Answer:

There were some thoughts early in the pandemic that Ibrutinib, a BTK inhibiter, could help patients who had contracted Covid-19, were being treated with the drug and who had lung problems. Some research was published in May on a very small sample that seemed to indicate that this may be true. It is important to note that this research was not carried out on CLL patients, but Waldenstrom macroglobulinemia (WM) patients. However, it seems that there was some benefit. The published research can be found here.

 

Immunity

Questions 1 -2

Will immunity improve after remission in CLL patients? how long does remission last?

Given the damage to our immune systems following treatment (in my case Obinutuzumab and Chlorambucil ending in March), what are the prospects of recovering a ‘normal’ level of immunity, and over what period of time?

Answer:

CLL is known as a heterogeneous disease, which means that all patients tend to react differently, both to the disease itself and to treatment. In very general terms, the longer the remission after

treatment, the better the immune system is likely to be, although it’s important to stress that this is by no means universal.

Question 3

Most, if not all of us have blood tests quarterly or six monthly, looking at 30-40 items (eg: ALC, WBC, PLT, Neuts etc).  We all have a weak immune system.  Is there a way to see just how weak a particular person’s immune system is?  Maybe something that is not normally done even.

Answer:

The regular Full Blood Count (FBC) is a very good indicator of a patient’s immune system, together with a look at immunoglobulin levels. A rising lymphocyte count together with falling neutrophils and platelets would tend to point to thoughts about treatment.

An overview of the immune system can be found on our website here.