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  • Writer's pictureMaddie Cowey

My Cancer Really is Incurable - An Update

Hello lovely people!

Long time no blog, and I've been trying to forgive myself for not writing on here so much as I've had a lot going on. I am currently finishing this blog on a train back to London from Cumbria.

A couple weeks ago I started back at work, I work at a pub and my oh my have we been busy! So not only have I been occupied with work, and a trip to my grandma's this week, but last month I also had my usual CT scan and I received the results a couple weeks ago. The news left me hanging for a little while (as I'll explain) so I didn't want to blog about it until I was really sure and I knew how I felt about it all.

A few weeks ago now I received the phone call from my consultant, hoping and expecting her to say that everything was fine, my lungs were stable and I can continue on the next 6 months as normal again. Unfortunately that was not the case. But it is not all bad news, in fact, depending on how you look at it it's not bad news at all. The thing is, my cancer is incurable, I do have multiple active and growing 'nodules' in both of my lungs, and they need treating. The treatment is by no means urgent - I am still living a healthy life with zero symptoms of cancer, and the tumours I do have are still growing very slowly. The majority of my lungs are healthy. However, my team think now is as good as time as any to take action and try and slow my cancer down. To read about my last set of scan results for a bit more context you can read my blog how it feels receiving good scan results.

Last week I found out exactly what the plan of action is going to be, having been told it could be surgery or it could be medication. I had my finger's crossed that by some miracle they'd be able to safely surgically remove all the nodules and I could get on with my life, as the fear of medication is that I'll have to live with negative side effects for a long long time, and that I may never get off the drugs. The idea of being on cancer drugs for the rest of my life really scares me (but I suppose cancer scares me more...)

Alas, surgery is not a viable or sensible option, and would cause more harm than good when weighed up against medication. So, I have been granted a drug called cediranib which is not actually available on the NHS and has only been through phase II trials for Alveolar soft part sarcoma (ASPS), but has evidenced quite good efficacy in slowing the growth for ASPS patients.

For anyone who knows a little bit of science, cediranib is a tyrosine kinase inhibitor, which works by inhibiting the enzyme (tyrosine kinase) that helps certain cancer cells grow. A few years ago cediranib was trialled with ASPS patients and although some positive results were found, there wasn't enough evidence for the drug to be approved by the NHS. Moreover, there simply aren't enough eligible ASPS patients around the world to do more of these trials to find out more about cediranib. You can read about the trial here, but basically it did work to shrink/stop tumour growth in some patients, with mostly mild side-effects like hypertension and diarrhoea (ugh).

It is an oral drug that I will take home with me and take every day, which is great as it means fewer trips to hospital than most other types of cancer treatment. I'll be on it for as long as I respond well to it (i.e. the cancer isn't growing!), which could be months or years, we won't know for a while whether it's working or not.

The news has been big for me, as even though I always knew that going on drugs was an inevitable aspect of my disease, I don't think I ever truly believed it would happen. I was diagnosed nearly 5 years ago now, which in the cancer world is a really long time to live with cancer cells in your body, but as a young person 5 years isn't a long time. I think I'd hoped that I'd manage to keep off cancer drugs for years and years. As nobody is ever able to put a time scale on my disease, I end up making one up in my head. But in reality I will never be really ready for cancer treatment - how do you prepare yourself for that? Instead I've decided to just get on with it and take whatever is thrown at me. Besides, anything that might stop the cancer from growing and add years to my life is a positive thing.

In preparation for these new drugs I'm having another full body PET scan and another chest CT scan in the coming days to give us the best idea of where my body is at before I start medication. Having these baseline scans means they know exactly how the cancer responds to the drugs. And once that's done it's time to start taking the drugs! I believe they're going to have to keep a closer eye on me - blood tests etc. to make sure I'm handling them okay, as some people can have adverse side effects. But the hope is that I'll manage them with minimal side effects and can keep going about my normal life.

We won't know if the drugs are working until about 6 months in, which is a bit of a pain but by this point I'm more than used to the waiting and not-knowing.

As much as I am nervous to start on this treatment and I am angry at the unpredictable nature of ASPS and how it's making this part of my life harder than it should be, I am trying to stay positive and see these drugs as a move in the right direction. But please cross your fingers for me that I'll handle them okay and that they work!

I am very glad to have had the distraction of work, as well as this trip to Cumbria this week, to take my mind off everything and remind me that cancer isn't my whole life, it's just a tiny crappy part of it.

I shall leave you with that thought and with the promise of another blog very soon.

Thanks for reading, please feel free to comment or get in contact with me if you have any questions. And be sure to subscribe and like my posts!! <3

Love you all,

M x


P.S. This year I am taking on lots of random challenges, on top of running/swimming/cycling 500k over the year! This is all in support of Sarcoma UK, the national sarcoma charity that funds vital research and provides support for patients and their families affected by the rare cancer. If you want to support me, then you can donate whatever you can through this link. Even £1 would be greatly appreciated, and you can donate completely anonymously!! Thank you!

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1 Comment

Mandy Bell
Mandy Bell
Aug 08, 2020

Another great piece, Maddie and again very inspiring with your great attitude. So, there's a challenge ahead but your life has got so much else going on, this will have to take its place in the queue for your attention. I love the way you don't define who you are by this disease. Everything crossed for a positive response to the new drugs. Lots more writing please!

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