The end of the road for cediranib?
Hello, welcome to my blog. It has been a while!I am managing about one blog post a month these days, which isn't awful I suppose. For a while, I didn't have much to update on, and I've been very busy just living life! But it is about time to update you all.
As much as I wish I could say everything is stable and things are still going well on this treatment, unfortunately I can't. If you're new here...when I say 'it', I mean cancer - an ultra rare type called Alveolar soft part sarcoma (it is literally officially 'ultra rare').
Back in September 2020 I started on a drug called Cediranib. (Read that blog here). Leading up to it, some of the tumours in my lungs were growing and new ones popped up at most scans. It was the right time to try to treat them with a systemic treatment. Cediranib is an oral chemotherapeutic drug that inhibits an enzyme (tyrosine kinase) which is thought to aid the growth of certain cancers. So by inhibiting this enzyme from working properly, you're able to prevent/slow/stop the growth of the cancer. I am not a scientist so don't quote me on that but it's close enough to the truth!
3 months into taking cediranib, we saw shrinkage of most of the nodules in my lungs, and stability of the rest! This was the best news about my cancer since my diagnosis in 2016. Every scan since then has been stable. I have continued taking cediranib. At some point my dosage was lowered, as I was stable and was having some not-so-nice side effects. So most recently I have been taking a lower dose. In March of this year I had my usual routine chest CT scan. I saw my consultant on the day who told me the scan looked pretty stable. She caveated that with her usual 'but we'll have to wait for the radiology report to be sure'.
I went on with my usual life. The last 6-12 months I have really been feeling like a 'normal' 24 year old. Aside from some side effects which have been manageable, and the odd trip to the hospital for them to look at me, I have been able to do everything my peers are able to. I work full-time, go on holidays, go out on weekends (occasionally), I love seeing live music, plays, I cycle a lot and have recently started going back to the gym. I have been getting quite tired of the constant health admin associated with living with cancer. I've gotten quite bad at chasing up blood tests, urine tests, scan results... I'm sick and tired of living with cancer, to be honest.
At my check-up a few weeks ago, 2 months after my last CT scan, I was feeling pretty chilled out. I wasn't happy about being in the hospital but I thought I'd just be seen to, pick up my meds, and be on my merry way.
Apparently, cancer doesn't work that way and is in fact the nasty, unpredictable bastard of a disease everyone says it is!!
'So we have had the report back of your last CT scan, and it does appear that 3 of the nodules in your lower left lung have grown.... we think this means cediranib is no longer working for you'
All I could think in that moment was 'Why am I here alone??? What do I say? What does this mean?'
It shocked me so much that my response was pretty calm. I think. I can't really remember properly what was said after that.
I asked how much they had grown. She told me all 3 had grown about 2mm each.
She apologised for not telling me sooner but said that she didn't think it was anything to panic about and she didn't want to worry me.
I had thought no news meant good news. That's that sentiment out the window!
2mm is tiny. It is. I still have no symptoms of lung tumours in my lungs. But it's still growth. Cancer growth is never good, is it?
She then told me they wanted to do a repeat CT scan and a PET scan. This was when panic and my fight or flight instinct started to set in. I wanted to fly. Run away as fast as I could out of there all the way home. Or to Spain. Or Australia. Never to return to that darned hospital.
It is funny that we start to associate people or places with our disease. I hate that hospital - I associate it with bad news. But the bad news is inside me. The hospital is actually good. It's giving me knowledge about my body and it's there to treat me. The bad stuff is (literally) deep inside me. But it doesn't feel that way, it feels like every time I return there bad things happen to me.
I did not want to return for scans. But I also didn't want a scan there and then. Last time they sent me for scans on-the-day I was in the hospital for over 6 hours. It was horrible. I didn't want to be cannulated. I hate needles. I had a feeling they'd miss my vein (spoiler alert - they did). And my consultant is pretty sympathetic but there's not much she can do in that moment. Even then, it felt like my duty to calm the air in the room and crack some jokes. At one point nurse number 3 walked in, there were 5 of us in the room, and in my head I thought 'Jesus Christ they've got 3 nurses looking out for me this is bad news' and out loud I said 'haha! It's like a party in here!' Ever the pacifier, me. I can't handle tension. Nothing like a laugh and a joke to pretend it's not happening.
Later on, when I was being cannulated and she failed in my hand, I said 'You know, I feel a drama queen moment is brewing today'. Sure enough, minutes later, I nearly fainted and felt like I was going to throw up/shit myself. A student nurse came to sit with me, and she was so awkward that despite the fact I was white as a sheet and felt like death, I rambled and rambled so she wouldn't feel so awkward. Or maybe it was so I could think about anything other than the news I'd just been given.
My consultant had mentioned trying another compassionate use drug. I didn't think to ask what it was called (too stunned). I asked whether the nodules could be ablated - she said they were too deep (too deep?? too deep?!). She said that she'd spoken to a thoracic surgeon and that surgery was maybe an option but not ideal as has more risks attached and I'm quite young and fit.
My thinking was that surely things are growing because we lowered the dose of cediranib. Surely we should just increase the dose?
Perhaps. But it could be that the nodules have just become resistant to the drug now.
I went for my repeat CT scan. That was 24th May.
Last week I had a PET scan to determine whether it's spread anywhere else.
I heard on Tuesday 14th June that the 3 lung mets that were growing, are now stable, however, I have a few new mets in my upper right lung. My consultant said 'unfortunately this is what we would call 'progresssive disease', which means the cediranib is no longer working'. 'This does mean you are eligible for a clinical trial'. Lordy. Do I really have cancer? And my only option is a clinical trial?
I asked how many new mets there are and how big they are. She described them as a 'cluster' - That doesn't sound good. They're in the exact spot in which I had the ablation. I'm not sure if the two things are linked, as the ablation was way back in 2018. She goes on to tell me there are around 5-6 in the cluster, and the biggest is around 7mm. This is tiny, but the fact that they weren't there 2 months ago is not good, surely?
Yesterday we were told that the rest of my PET scan was clear. The only active area(s) is in my lungs. Specifically the cluster in the right lung. It definitely can't be ablated. My hope is to increase the cediranib back up to 30mg per day just to see how that goes. I am used to the treatment and think it is worth a shot before changing treatments.
I have been asked to read up on the trial - called ImmunoSarc - and make my mind up about whether I want to go for it. It would involve fortnightly infusions of immunotherapy in hospital, combined with daily pills, and the idea of so many freqeutn hospital trips is very daunting to me. There are pros and cons to participating in a clinical trial. Maybe I should write a whole other blog post about that... And I should say that it's not my only option, if I decide it is not for me.
The past few weeks have been odd to say the least. I've gone from learning my cancer was growing, to meeting my idol (dodie) at a music festival, losing my mobile phone in Norwich, working... I've had my driving test coming up next week (my second attempt), and I had an internal job interview this week. I attended an event last week with Sarcoma UK sharing my experiences with a room of PhD students, on an empty stomach as I had my PET scan that evening. I went to 2 Billie Eilish concerts in a row last weekend. I have worked through it all. And to top it all off, this week I tested positive for COVID-19. So I (unknowingly) did the interview while sick with COVID. I also unknowingly had COVID at the Sarcoma UK charity event (explaining why I felt so utterly crap that day). I've had to cancel my driving test. I am rather impressed with myself if I am honest. My brain has been either working in overdrive or completely switched off. I feel a bit like I have been diagnosed with cancer all over again - except now I am more clued up, more mentally stable, and have more tools to deal and with and process the news.
I am balancing dealing with this news, with all the usual things people have to deal with in life, as well as trying to enjoy my summer and make the most of life. My zest for life is the reason I've been doing so much - like seeing Billie twice in a row instead of just once... Call me a crazy fan girl all you want, I am living the life I want to and intend on doing things that make me happy while I have the energy and can. Yesterday I booked a holiday for next month, and I am in the midst of planning another in August - nothing can stop me!!!
I'm not afraid of dying. In fact, ASPS is a pretty slow-growing disease, even if it is what kills me, it's unlikely to happen any time soon.
What I am afraid of is being on treatment for life. Living with pain, or fatigue, constant stomach problems, breathing problems - whatever it may be. I know lots of people on treatment for life who have minimal side effects, but even the idea of going to hospital every fortnight, scans every few months, for the rest of my life. It's daunting. And even though I have been living with this for nearly 7 years it is still hard to wrap my head around the fact that it is actually happening to me.
The clinical trial is an experiment. It is not a cure. But the hope is it shrinks or stabilises disease as much as possible, or even trains the body to kill the cancer by itself... We want to delay the cancer, or stop it in it's tracks. Even if the treatment works wonders, this damned disease is something that will follow me throughout my life and that's something I have to deal with.
Thank you for being with me through all of this, whether you are a passive reader that has never met me, a fellow person affected by sarcoma, a friend or family member. I appreciate you reading. If you are someone else going through sarcoma, I hope my blogs make you feel less alone. I started this blog because I wanted there to be a resource for people diagnosed with sarcoma. Somewhere to read about the real life experiences of someone living with a rare disease to hopefully not feel so alone. Don't hesitate to get in touch with me if you have any questions and want to chat further!
I will be back here with an update when I have one! This blog is my outlet so I will continue writing here when I get the chance.
Leaving you with a quotation on a postcard that I bought in Lisbon:
"And sometimes you meet yourself back where you started, but stronger"
Thanks for reading, and lots of love
You can see a mini vlog of my May 24th hospital appointment on TikTok and Instagram!