New lung cancer treatments, such as targeted therapy and immunotherapy, are having an incredibly positive impact on many people. But what happens when your response isn’t as positive?
Karen Michael, 49 from Bedfordshire, wanted to share her lung cancer story to show others there is hope even if a targeted therapy stops working.
“I’m not going to lie; it was devastating when my targeted therapy stopped working.
“I have the EGFR Exon 21 mutation and started on Osimertinib in June 2021. I had nine good months on it and then I started to get progression. In fact, I had progression at every scan throughout 2022.
“At the time, you can’t help but think why me? It’s working for so many other people so why isn’t it working for me? I felt like I was being diagnosed all over again and the future looked so uncertain.
“I stayed on Osimertinib for a few more months, whilst also having other treatments. I had radiotherapy on my lungs and hips, and gamma knife twice on my brain mets. I also went on a clinical trial for stereotactic radiotherapy, but sadly each scan still showed my cancer had grown.
“Then in January 2023, my scan showed the cancer had spread to my other lung. This ended my involvement in the trial and also stopped my targeted treatment. I tried to get on a second clinical trial but didn’t qualify due to the size of my tumours.
“However, there was still another option – chemotherapy, and this is why I really wanted to share my experience.
I know a lot of people are scared of having chemotherapy. I was part of Roy Castle Lung Cancer Foundation’s online support group and people often talked about their fears of having chemo. They were desperate for their targeted therapy to keep working so they wouldn’t have to have chemo. I want people to know it’s not as bad as you think.
“I don’t want to sugar coat it. The side effects of chemotherapy are tough, but you get through them and you learn how to cope.
“I had my first symptom a few days after my first session. I had hot flushes that went through my whole body; I thought I was giving birth to a fireball!
“Then there’s the effects that the steroids have. I would find myself at wide awake at 3am, and not just awake but buzzing! I described myself as a ravenous rat at a rave!
“I would be in the kitchen eating all of the kid’s food, scrolling through my phone online shopping. I’d then completely forget what I’d ordered until the postman knocked the next day with my random purchases. The weirdest had to be this awful see-through, clingy dress. I must have thought I was Beyonce when I ordered that one!
“I didn’t lose my hair with chemo though, which I know is a big fear for a lot of people. We have these really stark images of a person on chemotherapy – bald and fragile, who is constantly being sick – and I think that’s why so many people are really scared of this particular treatment.
“I was only sick once or twice when I was having chemotherapy, but I did suffer quite badly with nausea. I had my first session on a Wednesday, felt fine on the Thursday then Friday the nausea hit me. It lasted for about 4-5 days and was pretty horrendous. By the Tuesday, I couldn’t imagine ever feeling better, then the next day – poof! I was ok again. That’s what I want people to know – as awful as the side effects can be, you will get through them, and with each session I was more prepared and found things that helped to soothe the symptoms.
You can’t at the time, but I can now see the humour in each side effect. After one chemo session, I was on the train back home and put a sick bowl on the seat next to me. I texted my friend about how I’d found a way to avoid anyone sitting next to you!
“I had four sessions of chemo and a round of maintenance chemo, but I am currently on a ‘chemo holiday’ because of the impact it’s having on my kidneys. Some people may consider this a blessing, to have a left up from the symptoms but in all honesty, it doesn’t feel like a holiday should! It feels very scary.
“Ever since I was diagnosed over two years ago, I have been on active treatment, and even when it hasn’t been working as well as you’d hope, it still meant things were being done to try and control the cancer. I’m now in a very alien situation where it feels like nothing is being done and that’s what’s so frightening.
“It’s a hard thing to get your head around and you have to work hard to stop yourself going down that rabbit hole. Instead, I’m trying to focus on freedom I now have by not being tied down to appointments and tests and treatments for a month or so.
“It’s my 50th birthday soon so my family and I are having a long weekend near Barcelona. I wouldn’t have been able to do that if I was still having treatment. I’m trying to look at it that I’ve been given the gift of extra time, which is exciting whilst also being terrifying! That’s when denial can help!
“You never forget you have incurable lung cancer, but there are times when you do everything you can to not think about it and just try to live your normal life. I can control where I go for dinner. I can’t control what my cancer is going to do so sometimes you just have to go into denial. At least I do and it’s very freeing.
That’s something that has surprised me about my diagnosis – how I can now live in the moment. I no longer save that expensive shower gel for best. I take my girls on holiday to Disney and Lapland without debate. I take so much pleasure in the smallest moments. That’s why the last year has been the best and worst of my life.
“When Osimertinib stopped working, I thought that was it. But it wasn’t and in fact, I have done things this past year that, without my diagnosis, I probably wouldn’t have been able to do. I’ve been able to give my girls some incredible memories and will continue to do so for as long as I can.”
