I’ve written a nice little blog about receiving immunotherapy, but it didn’t work out. I did receive Pembrolizumab the better of the two immunotherapies on offer to me, it almost felt like it was written, NICE had seemingly brought forward their meeting for the “Technological Appraisal” of Pembro in patients who’d yet to receive Ipi. Therefore I was eligible not only to have it, but also for free, first line from the 25th of November. The benefits of it is that it works faster with less side effects and in more people. However like Ipi, as their action is indirect against the melanoma there is still a lag time for full effectiveness, if you get an effect at all. This is because they treat the immune system (Cytotoxic T cells), and they latch onto both the T cells and the melanoma to remove the inhibition that the cancer has evolved against the immune system. In effect the idea is to treat the patient and not just the cancer. Dabrafenib just treated the cancer, and in me did this rather well, albeit not perfectly or I’d still be taking it. It was turning out to be very hopeful with a former US president (Jimmy Carter) announced that his melanoma secondaries in his brain had seemingly vanished after a course of Pembro.
This gap between treatment is what I was always frightened of. However, initially I took this setback better than finding out I had brain secondaries, because at least I was expecting to become BRAF inhibitor insensitive at some point. However as much as I was reassured the brain secondaries weren’t as bad news as I thought they were I really felt that they would massively increase my risk of death. It is annoying that my fears were right. I received Pembro on Monday, there was some delays at actually getting the treatment, due to pharmacy, the bane of any junior doctors life. But by 6pm the infusion was up and I was receiving it. I was kind of expecting to feel different straight away, like I did when I started Dabrafenib. But clearly the effect was not as quick. I mentioned to the team that morning I had been getting headaches since Thursday, and night sweats. Night sweats are a symptom of cancer and recurrent ones should not be ignored. So understandably I was very eager to start. By Wednesday I woke up with my headache so fierce that I could not even be bothered to get pain relief. I rang the Marsden and spent most of the day in the clinical assessment unit, fearing that I would not be able to go to Wicked in the evening. Georgie raceddown from Leicester earlier than planned and by 2pm they’d decided that an urgent MRI scan would likely not show anything and discussed my case with the radiologist who also agreed. I had mentioned a drop in sensation in my inner thigh on clinical examination but perhaps this was old. The scan only 10 days before showed small stable disease…
I was pleased as it meant I could go to see Wicked, with Georgie, some of her friends, her parents, Dave, Alice and Matt. It was well, Wicked, it’s a very good show, probably my second favourite musical that I’ve seen after “The Book of Mormon”. The story is good and the songs too, they’ve managed to make a very good subplot to the wizard of Oz, so much so you’re left with a bad taste about the Wizard and everyone else in the book, as opposed to the Green Witch.
I digress, by Thursday the headache was still very much there. I really didn’t think it was going to abate like all the clinicians and family looking after me had hoped. More water was suggested and to overhydrate. I’d been proactively offered an appointment on Thursday by my Cancer Nurse Specialist to see my regular doctor on Friday. In the morning I emailed her basically demanding an MRI scan, I think rather pointlessly as they’d come to the same conclusion. By then I had numbness in my left ring finger, initially I thought this was from resting my funny bone on a table for too long, but as the symptoms did not abate my conclusion was something destructive is going on in my head. The headache was relentless, only marginally improved by codeine that they’d given me two days before. I was cannulated and they’d call me when they could fit me into the MRI scanner. They had one scanner offline that day so they weren’t overly pleased about another patient. But they squeezed me in nonetheless. We went to Winter Wonderland in Hyde Park whilst waiting for the MRI scan, we grabbed lunch and soon received the phone call for the scan. We jumped into a taxi and arrived slightly late, the first time in my long outpatient career that they were waiting for me as opposed to the other way around. Straight on the scanner. By then my head was burning, the fairy lights in Winter Wonderland had seemingly stimulated a migraine on top of my already burning mind, and my aura (scintillating scotoma) was in full flow. So I couldn’t see clearly, I didn’t tell Georgie I needed her to not panic so we could get back in time. After the scan I was clearly very unwell. Georgie and I were trying to have a conversation in the cafe, and my eyes were half closed and I was sweating a lot. Ibuprofen helped to clear the migraine, but the headache remained relentless. My Cancer Specialist Nurse called, and it was pretty obvious something was wrong. She’d arranged with the Prof to see me in his Private outpatients clinic. The chairs were nicer and there were free mince pies, otherwise it was still pretty busy. It was slightly chaotic as they were waiting for the scan report I guess so that they had the full information, but clearly they’d made the plan from seeing the images themselves. I needed steroids and quickly. There were new lesions and some of the lesions, one in particular had almost tripled in size, the rest were hard to ascertain from all the oedema (inflammation) in my head. This is why I couldn’t feel my finger, and why my head felt like it was exploding. I’ve been having flashbacks since then about things said, mostly things I said.
“my time on this planet is probably drawing to a close”
“my disease is so aggressive”
“let’s not beat around the bush this is very bad news”
“I really don’t have long do I”
Some things the Prof said:
He gave me his number
“You need steroids, you can’t possibly walk around like that”
“Let’s not give up just yet” or something like that.
The problem with steroids is there’s a risk that you reduce the efficacy of the immunotherapy, as steroids suppress the immune system. However many people have been successfully treated with immunotherapy having had steroids (I am on a very high dose of steroids), but it’s a catch 22. Either I have no quality of life at all, and try to weather the storm, but likely to have more neurological damage in the process, or take the steroids.
I had plans and they were ruined, I couldn’t risk going to the wedding Georgie and I were invited to the next day, because I couldn’t predict what the headache would be like. Actually I could have probably managed it in hindsight. I was told, and it’s something I knew already, that I wouldn’t be able to sleep that night because of the steroids. Steroids mess with your daily hormone balance, to the extent it tricks your body into thinking it’s just woken up. In fact I slept better that night than I have all year. Georgie and I watched a programme in bed and fell asleep at 8.30, I woke up occasionally but mostly slept for 12 hours. Although this isn’t medical at all but my brain had taken such a battering, with the steroids it had a chance to relax and I could catch up on the disrupted headache sleep from the last nine days or so.
The strangeness of my life, is all too apparent and there’s an odd twist to this, Georgie and I ordered an Uber to get me to the Marsden as quickly as possible on Friday morning. We were picked up and the driver informed us of new regulations that he now in fact had to wait five minutes before he could take us where we needed to go. I had heard about these proposed plans, and was kind of annoyed, but needs must, and I said just as much, being sympathetic to his plight. After all, we felt, it must be more annoying for the driver, he entertained us with “hold music” and gave us answers from an email every time I suggested we got going. I was eager to get there. At five minutes, he said look at the cameras, they became more obvious. We’d been part of an elaborate prank and we were filmed for a Uber video they hope to go viral in protest at this silly regulation. I just felt bemused, Georgie was overwhelmed, just another weird turn in my crazy life. There were cameramen as we got out the car and before we knew what was happening we’d signed so we could let them use the footage, we both felt we came across rather well not getting unduly annoyed and played along. We were whisked off to the Marsden in a free trip in an UberLux (the higher ranked car).
Further to these strange goings on my friend Matt was the life saving doctor in the attack in Leytonstone tube station, he very kindly asked each of the news agencies that contacted him for donations to my justgiving page. The night that it happened he messaged me and the boys Whatsapp Group, I’m covered in blood and I’ve just been involved in this, passing on the link.
Chosen specifically because of the hard man picture. Matt’s Mum reaction to it summed up how I felt, she saw him two days after on his birthday, and kissed him for being so brave and slapped him for being so foolhardy. As proud as I am of my very good friend, I’m very relieved he avoided any harm that night.
I’ve gone off on a tangent, into my bizarre world. I tell you all, I’m sorry. I’m sorry, I have an aggressive form of one of the most aggressive cancers. My life would be so brilliant if it wasn’t for this devastating disease. I have a good profession, a great family, super friends and a beautiful amazing girlfriend. My disease is so aggressive it seemed to surprise my clinical team, who including both consultants and all the registrars, probably have over 100 years of experience. I did not stand a chance of catching my disease early. I really feel that I only had stage 4 for a matter of a couple of months and by the time I started getting symptoms late January I’m pretty sure it was in my brain, liver, lung, spleen and gallbladder at that point. Stopping the Dabrafenib has taken it off the brakes and my cancer is in full throttle. My only saving grace is it took so long to come back in the first place. I still have a chance, if only the Pembro is less affected by the steroids, and it works quickly. Otherwise I’ll lose my fight before it even gets going. Where do we go from here? it would seem the next option will be to irradiate my brain to try and limit the growth of the melanoma therefore giving me a chance for the Pembro to work (if I am one of people who does actually respond to Pembro).
8 thoughts on “The Endless Setback”
There are no words for how incredible you and Georgie are. Praying for you both x
Sorry to read things are not as good as they should be , but your very brave ! I wondered if you would know the dr at the tube station once I read it , his age and where he trained . If you feel upto seeing another show go and see the jersey boys , thinking of you and all of your loved ones xx
So sorry to hear this Mark. Melanoma is an absolute b*****d. I really hope the steroids reduce the inflammation and the Pembro kicks it back into check asap.
Don’t give up, love and strength to you all xx
Hi Mark – sorry to hear you’ve come up against yet another obstacle. It’s all so relentless. You had me in tears on the train from Bristol – hope the radiotherapy works well to get you back on keytruda. Thinking of you and hoping you and Georgie are able to enjoy some time together – you both seem pretty special. All the best – as ever – Anna x
Thanks, we are, we so are. That’s why we’re now engaged. She’s amazing. How’s your husband getting on, on ipilimumab? Cheers Mark x
Dear Mark tonight is Christmas night. We just hope you will find the special present under your Christmas tree tomorrow morning: the gift of living and loving as you should be able to do. Please don’t give up. We are all with you, Georgie and your special family with all our love and thoughts. Merry Christmas dear Mark! the Bertone’s family xxxxx
Thank you for your kind wish. I certainly hope so. Thank you for your support and merry Christmas to Davide yourself and the whole family. Mark x
Sorry for the late reply, I’m sure you’ve gathered that I’ve not been that well. I’m out of hospital now. Fortunately had Christmas at home. I’m now out but my health is in a fine balance, with subtle signs of improvement. Again send my thanks to Davide for his ten km run, that was amazing. Thank you to the whole Bertone family for your support. You probably know but as I love telling people. Georgie and I have got engaged! X