Frequently Asked Questions - FAQ - CLL/SLL

 

Do you have to inform DVLA if you have CLL ? 

Notwithstanding any medical impediment, every driver has a legal duty of care not to drive if unfit. Alcohol and fatigue, just 2 examples.

It is not a requirement to inform the DVLA that you have CLL.

There may be certain provisos if you drive a certain category of vehicle like a bus, lorry, public service vehicle etc and/or you have any of the accompanying impairments listed on the official Gov website.

If your doctor advises you not to drive then they need to be notified by law. However, the rules changed last year making it incumbent on GP’s to notify the DVLA if they have concerns about a patient’s fitness to drive. 

From gov.uk/cancer-and-driving

‘You don’t need to tell DVLA if you have cancer, unless:

     you develop problems with your brain or nervous system

     your doctor says you might not be fit to drive

     you’re restricted to certain types of vehicles or vehicles that have been adapted for you

     your medication causes side effects which could affect your driving’.

Have a read through the site. If there’s any doubt that a physical or mental capacity exists which impacts on fitness or capacity to drive, it’s a legal requirement for the driver themselves to inform DVLA. 

CLL in itself would not appear to be a notifable condition unless the other elements are present. I’ve not known of a CLL’er who has routinely advised them but we are all different and may have additional disabilities. 

Just to clarify, CLL’ers are not forbidden from driving public service vehicles but it would be highly advisable to make sure the condition is declared because insurance companies may use the fact against the CLL’er in the event of an accident particularly if the DVLA haven’t been informed.

Response from CLLSA on HU https://healthunlocked.com/cllsupport/posts/138194453/does-anybody-know-...

Questions from a members conference:

We invited discussion groups at members meetings to list those questions about CLL, which members in the group could not answer. CLLSA trustees, who include a consultant haematologist, CLL patients at various stages of treatment, and carers, conferred after the conference and give their answers below.

Our responses may answer your concerns but we would like to emphasize that your CLL clinic remains the best place to seek advice.

 

CLL Overview 

How to extend the message to all CLL patients?

Assuming you are referring to the existence of CLLSA and its services, there’s no easy answer to this. Patient confidentiality means that CLLSA, and CLL patients, cannot have access to the details of CLL patients, so we have to use an indirect approach to reach CLL patients. We regularly send out leaflets to CLL clinics and rely on them to spread the word, with varying success. Watch and wait patients tend to miss out on information about CLLSA. We encourage members to “bang the drum” at their local specialist centre - drop of leaflets . IT savvy patients come across our services by internet browsing.

How many people dying from pneumonia but with CLL would have CLL given as a reason for death?

CLLSA trustees were unable to answer this question.

 

Members Conferences 

Are printouts of the presentations available?

We aim to put the slides of clinician presentations at our conference on our web site CLLSA website as soon as possible after the conference assuming permision is given. 

 

CLL Diagnosis

Is CLL a new type of leukaemia? When did it first appear?

Leukaemia was first diagnosed in 1845 and CLL was identified in 1913 along with three other forms of leukaemia. There’s a good article here on the history.

27.  Better to be ignorant or told you have CLL,(if no treatment recommended)?

Some patients will prefer to have all the info up front while others may prefer to wait until treatment is necessary. Once a diagnosis has been made it is not possible for the doctor to withhold the information. 

Has CLLSA investigated the extent of investigations members have had e.g. bone marrow, FISH test etc?

CLLSA has not researched this topic intensively but there are plans to launch a large research project later in 2017 on the quality of life of CLL patients and these topics would be included.

 

Living with CLL

Can I carry on a normal life? i.e. travelling on a busy tube, teaching small children (infections?) 

With sensible precautions, we recommend that patients and carers carry on their normal lives, simply for their own wellbeing. Sensible precautions might include avoiding unnecessary crowds/gatherings and the judicious use of nasal sprays together with hand sanitizing gels.

Help to be able to talk to people without them feeling sorry for me.

Be willing to accept some “reasonable” element of sympathy, whilst perhaps making it clear that you have come to terms with your situation and that you are comfortable with the way you are dealing with it.

How do you stop compassion fatigue amongst family and friends?

We were not sure what was meant by “compassion fatigue” amongst family and friends, e.g. fatigue on the part of the patient (as recipient) or the “donor”. Other than individual coping strategies, one trustee volunteered that when his wife began to suffer with the strain that carers inevitably suffer, his local clinic readily suggested that she meet with a specialist from the hospital’s psychology department. The support given to her was excellent.

Are there any medicines while you are on watch and wait, and at stage A?

Other than keeping healthy and as fit as possible there are no medicines to help, but see 10. above.

We also recommend the detailed practical advice on coping strategies and things you can do, given in three posts on Heathunlocked  Start by looking at the article: “original coping strategies for living with CLL”.

IgG deficiency causes. Infections, colds, pneumonia etc (40% of all patients die of pneumonia.) What treatment options are available to counter this, besides transfusions?

It is worth remembering that the consequences of a low IgG level vary in different patients – not everyone gets infections. Equally, many patients with normal IgG levels still get infection. Approaches: vaccination with pneumococcol, HiB, meningococcal vaccines for everyone at presentation (controversial, but may be helpful and unlikely to be harmful); prophylactic, long-term antibiotics (if you are getting recurrent infections); G-CSF growth hormone if you have low neutrophils; immunoglobulin infusions (either intravenously or, at home, in a subcutaneous formulation).

Weight loss 

Check out the CLLSA symptons side effects work section on the website. Your doctor may be able to feel that the spleen is enlarged. CLL itself uses up energy that your body would otherwise use or store. So you may lose weight, even if you eat normally. Rarely, an enlarged spleen may also increase the weight loss by squashing your stomach and making you feel full more quickly than usual.

Is there a higher incidence of skin cancer amongst CLL patients?

Yes.

Effectiveness of EHIC insurance for EU travel with CLL?

Sorry, none of our CLLSA trustees could answer this one. Members have made good use of the CLLSA  on-line forum on Healthunlocked for help with specific queries on insurance.

How soon can you ask for specialist tests to see if you have 17p deletions etc,

If you are still on watch and wait? It’s up to you- when you are diagnosed, if you wish. However, finding if you have a 17p deletion will NOT mean you should be treated. Treatment is based on clinical factors (see above).

Could the CLLSA website list of consultants with a particular interest in CLL be reinstated? It was much liked.

This was rather controversial when first introduced some years ago, but we shall discuss it again with the clinical community.

How do you decide it is time for treatment?

Medically, there are three factors to consider:

1. bone marrow failure, which is jargon for falling haemoglobin (less than 100) and/or low platelets (less than 100);

2. enlarged nodes/liver/spleen, which are very big, increasing in size or causing problems by pressing on other structures (just having some lumps is not a reason for treatment);

3. symptoms, often referred to as “B symptoms” – drenching night sweats/ high fevers without any evidence of infection/ marked weight loss/ severe, debilitating fatigue.

Advice for the carer and family to deal with CLL.

If the patient’s clinic has a clinical nurse specialist (CNS) for blood cancers, or one specializing in CLL, ask this nurse for advice and any relevant literature for carers and families. Make use of the CLLSA website www.cllsupport.org.uk for information. Meeting and talking with other others, e.g. at CLLSA’s Regional Conferences, can be helpful

 

Treatment

Where to find relevant information about the various treatments?

The Treatment section on the CLLSA web site is a good starting point. The UK CLL Forum website also has useful info. 

Any of the following worth doing: Vitamin C Therapy; Vitamin D therapy; Beta Glucan therapy; removal of mercury fillings? And high dosage protocol?

In all these cases of complementary treatment, it is important to be aware of the implications of high doses of the therapy. Check it out with your consultant or specialist nurse. It is also worth noting that, apart from some work on green tea some years ago, there is little or no scientific evidence to confirm or deny the efficacy of any of these therapies.

How do you control side effects?

We advise you to speak to your consultant haematologist or specialist nurse. Take with you details of the treatments you have had and be explicit about the side effects you are suffering. Your CLL clinic is the best place for advice on your particular case.

 

Treatment - Trials

How easy is it to get on trials and is this possibly the best option to access the latest drug?

It is both easy and not so easy! Firstly, the relevant trial must be open at the centre you attend – or you will have to be referred to a centre where the trial is open. There will be specific, and strict, criteria to decide who can be in the trial – so called “inclusion and exclusion” criteria. If you satisfy all these requirements,then you are in! Trials are almost always the best option to access new drugs

If you have treatment on a trial and go into remission and then neead treatment later can you back on the same trial?

This would be (almost) never possible. For information on trials we recommend Professor Peter Hillmen's updated article 2017. Links to currently available trials can be found on the site here

What are long-term effects of Ibrutinib? How latent are they?

This remains unknown, as it hasn’t been around long enough. However, one can predict we might begin to see problems with infections, as it suppresses not just B cells, but also other immune cells, such as monocyte function.

Is there a possibility of dose reduction on Ibrutinib?

Yes, but controversial. Our haematologist trustee has frequently found it necessary to reduce the dose of Ibrutinib in patients, without any loss of control of the CLL.

Does Ibrutinib always cause internal bleeding?

No.

What about the replacement of Ibrutinib with Venetoclax?

It works – currently, you could only get Venetoclax in a study or if you have already had Ibrutinib and progressed (or you had side-effects).

 

Treatment - Transplant

 

After Treatment

 

Related Conditions

 

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