Name: Carolyn

Neuroendocrine Cancer Site: Bowel and secondary liver mets

Hospital: Royal Free Hospital, and local.

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Carolyn’s Story:

Lanreotide. Love it or hate it, it’s been my friend and part of my life since 2011 when liver metastases showed up on a Gallium-68 Pet scan.  
In 2005, I had previously had a bowel resection and it wasn’t until six years later that the mets were confirmed.

Starting Treatment

My first Lanreotide injection was administered at The Royal Free London by Liz, one of the lovely clinical nurse specialists. Lanreotide is a synthetic (man-made) version of a hormone called somatostatin, which is found naturally in our bodies.  

Initial Challenges

Initially, I was started on 30mg to see how well I tolerated the drug. I was fine so the dosage was upped to 60mg. Going forward, the next injections were to be given at my local hospital which should have been more convenient for me. However, when I arrived at the Oncology Ward the drug hadn’t arrived from the pharmacy, there was no free bed for me to lie on and no trained nurse to administer the drug. They were unfamiliar with Lanreotide and the way it must be injected to avoid side effects. 
You may already know; it is very important that the box is removed from the fridge for at least 30 minutes prior to injecting as it needs to be given at room temperature. Also, the skin should be flattened, not pinched and the drug should be given very slowly over at least 20 seconds.

Finding a Routine

To try to avoid future stress, my Oncologist arranged for my injections to be collected from my local pharmacy to take to my GP surgery. My practice nurse would then inject me. This was before the home delivery service with Sciencus.
My new monthly routine worked well as I only live a short distance from both the hospital and the surgery. It meant that when I was working full-time, I could nip out during my break with minimum disruption to my day. Lanreotide quickly became part of my normal routine.
I have kept this system going as it works well, although my local CNS now sorts the prescriptions. It has the bonus that I have got to know my practice nurses well. They help me with other health issues & keep an eye on my vaccinations too.

Managing Side Effects

I am very lucky in that I have tolerated Lanreotide well. The side effects can vary a lot from month to month, but once I got into a good routine, most months have been fine. I recognise what’s happening and have learned to rest when I need to.
My main side-effect has been fatigue which would hit me a few hours after, so I always booked my injections for a Friday to give me the weekend to recover. I also had diarrhoea for a few days after so I was careful what I ate: high fat foods and drinks would set it off. I always carry Loperamide with me now.

Adjusting Dosage

When I had progression in December 2014, my Lanreotide was increased to 120mg. My mets continued to grow, albeit very slowly, so in March 2016 it was decided to increase the frequency to three weekly.  
I then had 4 cycles of PRRT in 2018/2019 and had two more in 2022.
At the end of 2023, before trying any other treatments, it was decided to increase the frequency of my injections once again and that is where I am at the time of writing this (May 2024) – 120mg every two weeks.

Long-term Effects

Over the years I have noticed a few things which I suspect have been caused by the Lanreotide. In particular, intermittent joint and muscle aches. I’ve had many investigations for this including x-rays, MRIs, and nerve conduction studies for my wrists, but nothing has ever shown up, so I have put this down to the drug. I take paracetamol to help. I also have dry skin which hasn’t been helped by the injections. I use a very rich body butter to help with this, along with the Aveeno range which was recommended by a dermatologist.
My once luscious locks have also thinned. PRRT definitely hasn’t helped nor of course, the general ageing process. I invested in a hair topper (a small hairpiece) and have now found some hair products that have improved my hair condition. This has been quite difficult for me at times as I like my hair to look good.

Injection Site Issues

I also developed lumps at the site of each injection despite adhering to all the instructions. The lumps eventually fade and if this happens to you, they’re nothing to worry about. Sometimes you can see them on scans, too.

Hypoglycemia and Diet

A few years ago, I also started to feel weak and shaky on and off throughout the month, and occasionally a little anxious. I wasn’t sure what these ‘episodes’ were, but after discussing this with my consultant, he told me they are caused by low blood sugar levels and are called ‘hypos’. Lanreotide can affect blood sugar levels – both high and low. To prevent these, I know that I must eat little and often so I always carry glucose sweets just in case. Do tell your healthcare team if this happens. Also, be mindful that long-term use can sometimes cause gallstones, but it’s quite rare.

Dealing with Bloating

Bloating can also be an issue. I’m careful what I eat when this happens as there is no doubt certain foods make things worse. Herbal tea can be soothing during these days. Cutting back on wheat products has helped & when mine was particularly bad, my consultant recommended a very strong probiotic, which worked wonders. 

Preparation and Information

There is a patient information leaflet inside the Lanreotide box. I carry this around with me just in case I need to show it to a medic who is not familiar with my treatment, should I ever feel unwell away from home.

Reflection on Treatment

Whilst my disease has progressed very slowly, with periods of stability too, I often wonder what would’ve happened if I hadn’t been having Lanreotide injections. I consider that I’m lucky to have access to this very expensive drug through the NHS, somewhere around £900 per injection I’ve been told. In other parts of the world, not all patients have this option.
At the moment I’m continuing with the fortnightly Lanreotide, and I will have more scans soon to find out whether it is working. If not, it will be back to the drawing board to discuss what other treatment options might be suitable.

Encouragement for Others

For any new patients struggling initially to cope with the Lanreotide, I would urge you to persevere if possible, as it usually becomes much easier and may just offer you the stability you need. At the time of writing this in May 2024, I’ve now had 100 injections. It’s a powerful drug with a big job to do, and nothing in cancer comes without side effects and adjustments. 

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Podcast

Listen to Carolyn’s story in our podcast, Season 3, Episode 7.

Podcast: Neuroendocrine Cancer UK
Season: 3
Episode: 7
Title: Neuroendocrine Cancer Treatments: Insights from Jane and Carolyn”