Supporting the

Neuroendocrine Cancer Community

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.