We first met member Gloria (Glow4life) in 2015 when she shared her journey on the PatientsLikeMe blog. She opened up about her experiences from receiving a lung cancer diagnosis (adenocarcinoma), to the sudden loss of her husband and going through several rounds of treatment. Despite it all she never gave up hope, and two years later Gloria still lives by her motto: “Never give up, never give in.”
Gloria was recently accepted for treatment with Keytruda, a groundbreaking new immunotherapy drug. Read on to find out more about how treatment with Keytruda is going, what she’s been up to since we last spoke to her and what she’s looking forward to.
What have you been doing over the past two years, since we last spoke?
From October 2013 to October 2015, I was stable, until a scan revealed that the primary site, right lung, had increased from 3mm to 16 mm, and I had a new growth in the liver. Because it had been so long since my last chemo, Dr. Brown, my oncologist, was able to offer further chemo, this time Carboplatin and Pemetrexed, four treatments every three weeks. My prognosis was 6 to 9 months without treatment, up to 18 months with, assuming it was successful. I didn’t expect to be offered another chance at chemo, so I didn’t have to think twice before accepting. Unfortunately, the first infusion made me extremely ill, and I was unable to continue. I opted to go back on watch and wait for three months, and recommenced treatment in March 2016.
The next few months were very rough, but made bearable by keeping a syringe driver on throughout. This caused a very nasty case of cellulitis by the fourth treatment, which eventually had to be treated in hospital with intravenous antibiotics. I got through this stage by telling myself that however horrible I felt, in a few days it would pass. Which, of course, it did, and I was able to go on the next treatment. I was pretty much housebound during this period, and promised myself that if the chemo was successful I would look into leaving my 5th floor flat and apply for a ground floor flat near to where my sister lives. The following scan revealed that all tumours showed considerable shrinkage, and no new growths, another miracle! I cannot describe the relief and gratitude I felt at this time. I applied for, and got, a garden flat on a lovely estate a few doors away from my sister, and fully warden controlled. I moved in October and have blessed every day since, I’m so much happier here, I’m not isolated and lonely, I’ve got a front door and a garden and I’m in the countryside. It’s perfect, and I see my lovely sister most days, she’s easier in her mind too, having me nearby. I did it just in time too because the next scan in November showed that the cancer was growing again, and because it had recurred so quickly it was probably now resistant to further chemo. I thought this was the start of the home run, which I knew had to come eventually, and was prepared for. But fate hadn’t finished with me yet, it was this very week that the new immunotherapy treatment, Pembrolizumab, was cleared for suitable patients in the U.K.
Dr. Brown said he was happy to put me forward for it. There followed an anxious wait until January while my biopsy sample was tested in Birmingham to see if I was suitable. And it was! It’s easy for me to believe that my darling husband, Tim, is up there rooting for me, having a word in the big man’s ear, as he would put it.
You mentioned you’ve been accepted for treatment with Keytruda, can you explain what the treatment is and what it means for you? How is treatment going so far?
Keytruda is one of the new immunotherapy drugs, and it’s a massive breakthrough. As far as I understand, it’s offered to lung cancer patients whose cancers have stopped responding to chemotherapy. It can only be given if a certain protein shows in the biopsy sample, which fortunately mine did. I was one of the first in the country, and the first in my local Trust, to be given it so I feel incredibly privileged. It’s given by infusion in the chemo unit, it takes about 30 minutes with a 10-minute flush afterwards. Generally, after 4 infusions a scan is done and if the treatment appears to have been effective it can continue every three weeks for as long as it’s effective, for up to two years. I take this to mean that two years is the maximum survival rate. It’s not a cure, but it’s giving extra time to people whose time was running out, and there are very few side effects so that time can be enjoyed without the misery that comes with chemo.
I had my first infusion on January 17th, and felt well for the first week, then came down with a severe chest infection. This responded well to antibiotics and my doctor, Dr. Brown, doesn’t think it’s treatment related. My two following infusions have gone well, with no side effects, I feel well but am very easily fatigued, much more than usual. The best thing is not having to take a vast cocktail of post treatment drugs so my head is clear and I’m not walking around like a zombie!
My fourth treatment is March 22nd, with a scan booked for 18th April, at which point I should know if it’s working.
The X Ray that I had before my last treatment showed a distinct improvement in the area of the primary tumor, but Dr. Brown has said he can’t be sure that it isn’t the effect of the antibiotics on the chest infection, but it looks promising, nothing new growing in there at least. So, we wait and see.
What does Keytruda mean to me? It’s exciting to be involved in such groundbreaking treatment, and even if it doesn’t work for me, to know that everything they learn from my case will help in the further research and development of immunotherapy. Who knows where this will take the treatment of all cancers, even eventually to a possible cure? Also of course, it means hopefully more time. My daughter is getting married to her lovely man in October, and I want to be there. I’ve bought my outfit, and I’m determined to show it off!
In the meantime, every morning that I wake up feeling well is a day to celebrate life. And I saw another Spring!
How can others grappling with a difficult diagnosis apply your motto: “never give up never give in,” to their own life?
In all honesty, I’m not sure they can. Every cancer, every patient, is different, and we all deal with it in our own way, finding courage and inspiration from wherever we can. However, I will repeat what I said in my last interview, which was: “somehow, from somewhere, courage will come.” When we are first given a terminal diagnosis, it seems insurmountable, how will we ever be able to cope? But for the most part we do, because we have to, and courage comes to help us through, and to help our families through, and we live a “new normal” life as time passes. I’m very aware that I’ve been incredibly lucky, and I’ve had a long time to adjust to my new normal.
I’m a realist, as well as an optimist, and I know my time will come, as it does to everyone, and I hope I can carry “never give up, never give in” with me to the end. For me, then, it will mean accepting the inevitable with as much grace and courage as I can drum up.
How has PatientsLikeMe helped you through the challenges of the last few years?
One of the most significant ways in which PatientsLikeMe has helped me, is to show me how very lucky I’ve been. Reading some of the posts, and seeing for myself the age and circumstances of other cancer patients has really made me thank my lucky stars. Yet I see that people much worse off than me are coping, and getting on with their lives, just as I am. So if they can, I surely can.
We’re stronger together, so to be in touch with other patients is really empowering. If I’m having a bad day, I can be honest here, and say so. Just one message of support in reply is enough to remind me I’m not alone, and of course that works both ways. I have the good fortune to be a recipient of the very best care the NHS has to offer, all completely free. I couldn’t have had better care, and in many other countries I would have died long ago. The NHS is far from perfect, but it’s still wonderful, and I cannot thank or praise my medical team highly enough. Sometimes, reading of the struggle some patients from other countries have, just to fund their treatment, leaves me speechless.
In conclusion, can I send a message of hope and support to everyone currently engaged in the fight against this evil disease, and their families. Huge advances are being made, let’s hope that future generations can be free of the scourge that has affected so many, for so long.
Never give up!
Have you ever experienced Keytruda (Pembrolizumab) therapy to treat your condition? Share your story in the comments.
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