I attended a webinar hosted by the CLL Support Association and Leukaemia Care.
Thanks to everyone responsible for organising the event, I found it most informative. And of course special thanks to Prof. Hillmen.
The guest keynote speaker was Prof. Peter Hillmen, Consultant in Clinical Haematology at Leeds Teaching Hospitals NHS Trust and Honorary Professor of Haematology at the University of Leeds.
Here are the main points discussed by Prof. Hillmen.
Three main areas discussd were: 1) Treatment options 2) How covid-19 has been managed by hospitals 3) The effects of shielding on patients.
1) CLL Treatment Options
When discussing treatment, we need to remember there is a wide range of patients, from early stage to having had lots of treatment.
It is still the case that we only treat patients with symptomatic, progressive disease. Half of patients with early stage will never need treatment. There is no evidence to show benefits of early treatments.
In last 20 years, there has been a dramatic improvement in treatment, even moving towards a possible cure, though hard to say when.
Those with p53 mutation, just 7 % of patients, would not receive chemo as it would no longer be effective.
As lymphocytes continue to grow, normal cell death is affected. This drives targeted treatments such as ibrutinib, which disrupt cell signalling, thereby promoting cell death. [Ibrutinib blocks Bruton’s tyrosine kinase (BTK), a vital component of B cell receptor signaling. In doing so, it disrupts a number of molecular signaling networks that are important for the survival and growth of CLL cells. Source:
Other therapies help the cells kill themselves. These have been very effective both as front-line and for relapsed or refractory patients. Trials have shown that ibrutinib is more effective than chemotherapy. Follow up has to be long term before being able to make judgments.
The next phase of trials is to combine treatments that are mutually exclusive in the way they work. Again, early trials have shown promise.
Treatments are driven by what is both approved and funded. (by NICE). Currently we do not have funding for targeted therapies as frontline except those with p53 deletion.
Another well-established treatment is via the FLAIR trial which has 1,400 patients and started in September 2014. They are getting close to the first results, though covid-19 might postpone it slightly, The trial compares new therapies e.g. ibrutinib vs FCR therapy. The problem is that brutunib not only stops cells growing but also switches off things not related to CLL, hence the side effects. The next generation of drugs will be even more precisely targeted. For example, Acalabtrubinib
2) Covid-19 and the Hospital environment:
Hospitals started preparing in February. There was fear they would not be able to cope. Most hospital appointments were postponed or replaced with telephone appointments. For example, at the start we would only see 10 people in clinic instead of over 50. The hospital was divided into covid and non-covid areas.
We were not allowed to go to ITU, whereas normally would have followed up patients. The Nightingale centres were important for easing the situation. The situation is now starting to ease, so just saw 15 patients in the clinic (cf 50-70).
3) Shielding and Risk Of Infection
We know CLL patients have increased risk to infection. About one third will report infections and this increases when receiving treatment.
A study involving 17 million patients with covid-19 has shown that patients with haematological malignancy have four times the risk factor.
A number of patients seen in the clinic contracted covid19. In FLAIR we found 18 confirmed cases (out of 1,400). Possibly there have been others with milder infections, which have not been reported Most of these were early on. There is evidence that shielding has helped. Sadly, there have been 2 deaths.
There is no data on whether there are different levels of risk according to stage of CLL.
Some patients are coping well with shielding, but others struggle due to social factors.
As the virus gets less, the risk of going out will get lower, but should still exercise caution and assess the risk carefully.
He is optimistic that the disease threat will continue to go down but would still advise against travelling until we know the threat is under control.
Question-Answer Session
Is immunoglobulin in short supply due to covid-19?
It is always in short supply. Patients with CLL are a priority if they have an infection. So covid-19 has not affected the availability of immunoglobulin to CLL patients.
Can you tell me about vaccine development?
Vaccines will be important, hopefully for controlling subsequent infections. Some of the vaccines are live and would not be given to CLL patients, but others non live. However, I would expect vaccines would not be available until early next year.
Q-A How are patients protected (visiting hospital)
1)Clean areas
2)Staff wear mask, patients also
3)Distancing within department, so less patients in department
Obviously, this will become a greater challenge as we go back to normal. We have tried to avoid patients going to covid-19 area. A balance between need for blood tests and risk
Q If I have a weakened immune system can you tell me about cytokine storm? Would it help with combating Covid-19?
Covid-19 has two important aspects: patients asymptomatic can be infectious. Plus, the immune response can lead to adult respiratory distress syndrome. Theoretically we could have less storm and immune system response, but in others this is not the case. The problem is the immune system is very complicated, so cannot predict how patients will respond, but there is no evidence this will protect them if they have covid-19.
Q Will I ever be safe to stop shielding whilst covid-19 cases?
A There is a need to balance risk with problems caused by long-term shielding. But this risk will reduce gradually, especially if we still take precautions. The history of corona viruses is that they do gradually disappear over time e.g. SARS. So I am optimistic that the levels of virus will continue to diminish over time.
Q Can CLL patients on a trial get an antibody test?
A We are discussing trialling both virus and antibody tests in patients.
Having negative test does not necessarily exclude it so would do more than one test. Also the virus can last longer than 2 weeks. For serology tests the wait has been longer for a reliable test, but now getting some showing more reliability. Likely that this will become more available and have been discussing doing a clinical trial for CLL patients. But just because you have an antibody does not necessarily mean you are immune. So in summary, if we had a reliable test we would use them with CLL patients but need to get better tests.
Q Will advice for W and W be different from others
A: No evidence this is necessary. Fair to say people on treatments likely to be more vulnerable, but we do not know the effect on W and W so they need to be treated as vulnerable as well.
Q Does it make a difference if we have had virus?
A Probably, but we do not know for sure whether there will be immunity.
We can now see how first relaxation has affected spread of virus, and we are learning from this. So we need to be cautious but not to extent of harming people.
Q Does no spleen make covid infection more likely ?
A Probably as it is important part of immune system, though many patients live successfully for years without a spleen.