Dear Friends of CLLANZ

Skin infection (cellulitis) and CLL – a cautionary tale

Cellulitis is an infection of the skin, most commonly of the legs. It is usually due to bacteria. It commonly arises when the integrity of the skin is breached by a penetrating injury, often in the context of a pre-existing condition, such as diabetes, and conditions where immunity is impaired, such as CLL.

Cellulitis is the second most common primary site causing severe infection in patients with CLL (lower respiratory tract infections are the most common). It is often associated with sepsis/septicemia; when this happens, mortality is about 25% one month on from the episode of cellulitis. So awareness of what cellulitis is, and prompt antibiotic treatment thereof can save lives.

Professionally and theoretically, I have always been concerned about the risks of cellulitis, but in practice I’ve always led a physically active lifestyle, acquiring numerous skin injuries in the process. So it’s perhaps surprising that I hadn’t ever got cellulitis.

That all changed recently, when I had a penetrating injury of my left leg by a stick. Twelve hours later, I awoke in the night feeling very unwell, with a red, swollen, and painful leg. I was admitted to hospital for five days of intravenous antibiotics (blood cultures were positive for E. coli), with a good response, and was sent home on oral antibiotics.

About a week later, the infection recurred, despite oral antibiotics, and I again felt very unwell. I was readmitted to hospital, the first few days of this period being in ICU/HDU because of my level of unwellness. Blood cultures were again positive for E. coli. This time, I was an inpatient for a total of fifteen days; IV antibiotics for all that time, then a further week of IV antibiotics as an outpatient, after discharge. This seems to have done the trick, and I am currently back to where I was pre-leg injury, health-wise.

So, for those with CLL, please look after your skin, particularly on your legs. Wear gumboots and other protective clothing when in the outdoors, seek prompt medical advice/treatment for any skin injuries, and keep a careful eye on such injuries. Sepsis can be serious/fatal quite quickly.

I for one have certainly adopted a change in approach to looking after my skin as a consequence of this episode.

Best wishes

Neil Graham

Dear Friends of CLLANZ

It was very interesting to learn in the news this week of Pharmac’s ‘wish list’ of 73 medicines it would like to pay for, if it had the budget to do so.  It’s the first time Pharmac has released figures for what it calls its ‘options for investment’ list. The cost of funding them would be $417,670,000.00. Newshub got the story from an Official Information Act request – see it here, and see Pharmac’s formal response here.

The wish list is separated into proposals (118) and medicines (73), (as some medicines treat several illnesses) and it comes with a breakdown of how long they’ve been waiting.  Although the list hasn’t been released, we expect Ibrutinib to be on it, as one of the 14 (of the total of 73) that have been waiting the longest, i.e. for 6+ years.

The timing of this is interesting, coming as it does in the lead-up to the Budget (May 20), and with Health Minister Andrew Little confirming to Newshub that any additional funding for Pharmac comes down to a political decision. That reality is also reflected in the government’s decision to exclude funding from the ‘independent’ review of Pharmac that is currently underway.

Filling the budget hole to fund the 73 ‘wish list’ medicines would mean a 40% increase in Pharmac’s funding, an increase that would go some way to bringing us into to line with Australia, the UK, Canada, etc.  We don’t know what Pharmac’s bid has been for this year’s Budget, but last year they didn’t ask for any more money at all!

We in CLLANZ have worked hard over recent years through petitions, submissions, engaging with media, marching on Parliament, appearances at select committees, and actively engaging with Pharmac to advocate for access for CLL patients to Ibrutinib, among other treatments, as well as treatment pathway reforms, and faster, more transparent funding decisions. We’re very proud to have been part of the push to reform Pharmac, which is now seen as losing the PR battle.

We hope this work will bear fruit in the coming Budget, but in the meantime we intend to continue our advocacy as vigorously as possible.  In this regard I warmly encourage you to support the current ‘Lie Down For Life’ campaign running nationwide on 12 May by Patient Voice Aotearoa. And if you haven’t already signed their petition to Reform Pharmac and Double its Budget, you can still do so here. This will be presented to Parliament on 12 May, the same day as we Lie Down For Life!

Kia kaha

Neil Graham

Dear Friends,

I and two colleagues are in the final process of submitting for publication a paper on second primary malignancies (SPM) in NZers with CLL. I have mentioned this briefly previously in my newsletter and I will let you know when the paper is published. The NZ experience of SPM in CLL has not been studied before.

The commonest type of SPM in NZers with CLL was skin cancer in its various forms, which accounted for over 80% of SPMs. One of the bottom line messages from the study therefore was to use skin protection from the sun for prevention, and have a skin check twice a year if you have CLL.

And reflecting on prevention and early detection, we all also need to focus on a holistic approach to health issues and healthy living, oncology patients perhaps even more so, as well as accessing treatment for our CLL – the latter potentially being a distraction from a broad approach to the way we look after ourselves.

You will all be familiar with these lifestyle components, including the following:

• Keep yourself lean, and, if you are overweight , take steps to get a healthier BMI (obesity in recent times has been shown to be a major element in risk of malignant disease)
• Don’t smoke
• Take alcohol in moderation, if you drink it
• Exercise regularly (studies in recent times have shown extensive health benefits from exercising)
• Keep happy, and keep your stress levels down
• Eat healthily
• Lead a balanced existence

In my career as an internal medicine specialist, I have always tried to encourage patient to focus on a broad approach to their disease, not just the main active problem, and have seen how much of a difference this approach can make.

Best wishes

Neil Graham