As a brief recap, I am currently experiencing the (very low likelihood) downside risks of being treated with a PD-1 inhibitor. Essentially my immune system trying to wreck my previously healthy kidneys. As an aside, as I write this, the immediate crisis is under control, but I won’t know for a while whether the reduction in signs and symptoms is because the steroids are keeping me under control, or because the attack itself has stopped and the kidneys are recovering.
My last update concerned the dreadful experience of being admitted via A&E and spending the night in their care. By the following morning, I am safely and much more comfortably back in the calm familiarity of the acute oncology assessment unit (AOS). From there, I am looked after fairly well. They are also of the view it’s an immunotherapy adverse event. My doctor niece tells me I would have had to have sat in the Sahara without water for several days to drive that level of creatinine increase through dehydration alone. Other causes, such as infection or kidney stone are quickly ruled out through tests and ultrasound. Kidneys are confirmed to have been normal, bladder also normal. The overnight hydration has started to bring creatinine down, but I now have a constant raging thirst. I am on a somewhat embarrassing process of collecting all my urine so it can be measured and logged.
I am admitted to the oncology wards and given choice about whether I want to start high dose steroids now, or get more sleep, see if there’s further improvement, and start in the morning. Much as I hate the idea of high dose steroids, this is an utter no brainer. I want to live, I want to minimise the long term damage. I take the steroids.
My room is a 4 bedded room with a shared bathroom. 2 women who are ambulant, not in pain, different problems but not a major burden to the overnight staff. The other lady is much further through her cancer journey than us. She is bed bound, on morphine, in constant pain, not lucid. The night passes with her crying out, vomiting, needing others to regularly call for help for her. It’s not a peaceful night, obviously the steroids don’t help me sleep anyway. I keep bringing back containers of urine from the bathroom, and they stack up in my cubicle because the overnight staff are not getting the time to measure and log them. In the morning, the very sick lady is transferred out so she can be put on a morphine driver and kept in a private room.
My own consultant is a breast cancer oncologist but is also the hospital’s clinical overall lead for oncology. She is in London at a conference. Her main registrar has been heavily involved in my case from the day before and seems competent. In the morning, I receive a visit from someone I have not met before. I immediately clock his seniority based on the fact he is wearing a slightly tatty jumper. He introduces himself and says my consultant has asked him to see me. It turns out he is the overall head of cancer at the hospital. I won’t name him on here, other than to say he is a Professor with a very interesting looking CV, on the boards of several other hospitals, serious research background, and also involved in various biotech companies involved in the immunotherapy related field. He came across as a knowledgeable man. We discuss the situation at length. He agrees with the current action plan, decides further renal tests are needed and sets up so I can be urgently reviewed by renal if/when needed. It’s clear I am of major concern and also experiencing something that rarely happens with Pembrolizumab. (I later discover it’s something like 3-5 in 10,000).
Morphine lady is replaced by another lady. This one recently immobilised by a fall on top of her existing cancer problems. She can’t move without 2 nurses to help. She has ongoing continence problems of all types. Another difficult night passes as they never quite get to her in time and frequent bed moves, bedding changes etc are needed. The urine pots stack up again. In the middle of the night a nurse does take them from me, and despite clear instruction on what she is meant to do, I hear her flush them all down the loo.
The following morning my consultant is back in town and I am treated to a mass arrival of consultant, registrar, metastatic breast care nurse. It happens whilst my husband is visiting, which is also helpful. We sort out a method where I can use a jug to measure and log my own urine. We establish the go forward plan (essentially a week or so at this level of steroid, then try to start to ladder down, renal have reviewed and are ready to step in upon urgent referral). Other blood tests are taken. Creatinine has held its initial reduction but not reduced further. They decide to use a few days of IV steroids, rather than the tablets, then switch me back to the tablets.
Later in the day they decide I will be more comfortable sleeping at home and returning daily for outpatient IV steroids in AOS. This is something of a relief. It takes a little while to get the bag of take home drugs to me and get me discharged, but I go home that evening.
Next up, the outpatient phase.
