Living with Lanreotide by Kate Quirk

By: Beth Chesser

Posted on: 6 years ago

Trigger Warning.

Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.

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Lanreotide and I have been living-in-sin for three years now. Before that, I spent a year with Sandostatin but we fell out when he messed with my blood sugar levels.

Lanreotide and I have a love / hate relationship.

I see him sitting in my fridge in the run up to injection day, every time I reach for the milk. He winks at me from his long white box and I know his silver foil wrapper which covers his sharp needle is waiting to be set free.

I love that he keeps me stable – together with 3 cycles of PRRT.

I love that he doesn’t make me bald.

I love that he stopped my flushing in one fell swoop.

I love that he made me more aware of my diet and what my body needs.  

But he lied when he said I would lose weight.

And so we roll.

Every time he comes home on day twenty-eight, he gives me a ‘bolts through the brain’ headache.  Just for a day.

He brings with him a laundry basket full of fatigue.

He makes my stomach bloat and gives me a rock hard abdomen.

At first, he completely stopped me visiting the loo.

But we’ve learnt to compromise…. I now have slim jeans and fat jeans.

I hate that he makes my hair shed and frizz.

He dries up my skin and makes me look weary.

But most of all, I hate it when he messes with my cognitive ability… 

… the panicked search for the perfect word

… the loss of train of thought

… the befuddled fog.

On the other hand, things could be so much worse.

I don’t know the science behind the discovery that this drug could slow the growth of neuroendocrine tumours. 

I don’t understand the microbiology in our cells which drinks this drug to slow our cancer down. 

And I certainly don’t know the price to produce it.

But I do know that – together with our UK NET Centres of Excellence –  it is a life saver for most Neuroendocrine Cancer patients. 

And it can keep working for many years.

We are all different and we all respond differently. 

But if there is a choice between a somatostatin analogue (which Lanreotide is) or the relentless ‘Red Devil’ Doxorubicin chemotherapy, I’ll take Lanreotide any day.

Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.

Do you have a story to share?

Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.

If you have a story to share, we would love to hear from you.

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We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.

By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.

Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.

Please complete the form below to share your story.

A note about reading and listening to personal stories

Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.

Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.

Support and next steps

You do not have to face this alone. Support is here when you are ready.

Disclaimer

The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.


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Published: 4 days ago

By Beth Chesser