I finished my ipi/nivo dual immunotherapy at the end of March. The standard approach is for a break of 6 weeks followed by nivolumab monotherapy. I’m a Big Fan of this treatment. I looked forward to the 3 week visits for treatment and I’m disappointed I have to wait 6 weeks for the new regime to start. Who says cancer doesn’t take over your life huh?!
But I start to feel a bit pants. I’m getting dozy again, feeling lethargic and I lose my appetite. I'm freezing cold all the time as well. I start getting worse night sweats that leave a wet patch on the bed clothes and removing my nightwear is like peeling off wet swim wear. And I have an excessive thirst. I don’t leave the house without a bottle of water, else it’s too uncomfortable because I am parched!
The Good People on the Incurables Forum advise me to get myself off to the GP for something for the night sweats. Oh! Enlightened, I do exactly that, and get the inevitable blood tests. My oncologist finds them first though and an hour later I am sitting in his clinic discovering that my kidney function is in the amber alert zone. The blood tests are a complete mixed bag. My symptoms suggest hormone imbalance, but the blood tests don’t support this or a dehydration theory. Despite a kidney tumour, your kidneys still need to carry out this vital function I learn. The irony is not lost on me.
My next dose of nivolumab is due in a week. Oncologist M wants to fix this ASAP so the treatment can continue. The next day the kidney function is worse and I’m told to bring a bag in and they warn me I may be “detained” until they get to the bottom of it.
I arrive at the Cancer Assessment Centre. I am shown to a single en-suite room which makes me think “OMG! They really are going to keep me in!”. But compared to other places I’ve been, this is favourable. The atmosphere is relaxed, the sun is shining in the window and there’s no lock on the entrance door to the unit! Also, later I discover they make better tea than the Victoria. WIN!
Diabetes Insipidus is the first suggestion, but my team has never seen this caused by immunotherapy and the rest of my bloods aren’t supporting it. Liaison with Endocrinology and Urology follow. There‘s a long wait (hours) to gate crash the ultrasound queue (to check for a blockage) but nothing awry is found. I am allowed home (1-0 to me!) and asked to return for 8am the next day.
Then there is a suggestion that I’m not producing enough vasopressin (anti-diuretic hormone) and a head CT scan is intimated, but Endocrinology eventually rule this out.
As my kidney function deterioration correlates with the immunotherapy, there’s no denying the cancer treatment is a strong suspect as to the cause. My team are now suggesting that as I have responded so well to the treatment, then it’s very probable that the inflammation is greater, causing knock-on effects and my poor kidneys aren’t coping. Steroids are suggested to quieten things down. WAIT? WHAT?! Alarm bells ring. I do NOT want to start taking steroids. (now it’s 1-1). Then it’s suggested we might have to postpone the nivo. . . . . . noooooooo! (2-1 against me)
Bank Holiday Monday 2nd May 9am is my scheduled bloods in preparation for the nivo on Wednesday. A duty Doctor calls me at 2pm to tell me my bloods is awry and he’s going to email my oncologist. I’m already booked into the oncology clinic tomorrow as a last check, but the writing is on the wall now.
At the clinic we talk numbers and trends. My kidney function (eGFR) should be over 60, but since cycle 4 (end March), there has been a downwards trend. This week it has fallen further, but it seems stable now (35). I am given a new diagnosis of Acute Interstitial Nephritis. The plan is to start steroids. I voice my concerns. The side effects are fresh in my mind, the mood altering behaviours, potential depression, increased appetite, difficulty sleeping. I’m worried about starting a journey and there being no return. I carry a red medical alert card, already. Steroids would be a blue card too. Just no.
We discuss the plan, the backout, the what-ifs, the drug and the dosage. To be fair to the Oncology and Urology consultants, both answered my questions, and I'm eventually in possession of Plan A, B, C, and Plan D (not kidding).
I am confronted with my red line face-on, with no alternative. I’m upset. I ask for a second opinion with the senior pharmacist at my GP practice who was good to me before. M offers other oncologists, but it’s not the oncology which is the problem. I want the drug Q&A. I know any second opinion will support what M is telling me now, but I need more time, more detailed information, and from a segregated specialism.
To cut a long story short, further phone calls follow the next day with the pharmacist, and then my oncologist. Eventually all the emotions come out and I’m crying. It’s all so easy for them to advise blah, but I feel it’s my body, my family, my 18 year old sitting her AHs right now. There must be no disruption or risk to the home routine. Not now. It should be my choice and herein is the crux.
I want to be in control and decide what’s going to happen. This is the first demonstration that I am NOT in control. M won’t approve the nivo immunotherapy. The cancer is laughing in my face “Haha! I am in control!”.
A couple of days later I start taking the steroids.
So sorry you are facing this development particularly as the immunotherapy had seemed to be helping in so many ways. Not being in control makes it so much tougher. I hope the steroids do what they are meant to do without a repeat of the side effects you so dread. I don’t know what this will mean for your next block if immunotherapy and hope you can find a balancing solution around your quality of life.