Another blog entry, another ‘itis’. Not sure how many more I can collect since that lovely time in mid September when my immune system went on the rampage against everything no longer hidden behind the PD-1/PD-L1 invisibility cloak, thanks to the wide reaching effects of Pembrolizumab. We started with thyroiditis (thyroid stopped working) and nephritis (kidneys not working properly). Later on we had pneumonitis (inflammation in the lungs) and colitis (inflammation in the bowels, thankfully mild). The latest issue started to manifest over Christmas, a few days after my steroid dose had been reduced to 10mg per day. It takes the form of a stinging sensation and pins and needles running from my left thumb all the way up my arm into my spine. It can usually be relieved by turning my head to the right. Frequency and intensity has been increasing. The likely explanation is, as with all of these, inflammation. In this case inflammation at the C6 spine, putting pressure on the nerve. It’s likely to get worse as I continue to wean off the steroids, more on that later.
Today’s oncology appointment, which brought about that diagnosis, also brought feedback on the CT scan I had last week. I had been expecting tumour progression, given it is now 5 months since my last Pembrolizumab infusion, and I haven’t had any cancer treatment as all since the NAB-Paclitaxel infusion I had in the first week of September. As ever, it was difficult to get a clear picture from the report. It showed improvement from my last CT (August) but it seems like 1 tumour has grown and 1 has shrunk versus my last MRI (October). Apples versus pears? The medical opinion was it is relatively stable so we scan again in 3 months to see what has happened. No cancer treatment required in the interim. That’s good news, bearing in mind I can’t have more Pembrolizumab, and the next (and possibly only other) treatment, Trodelvy, sounds very side effect heavy. I need to make sure I get on with enjoying the next few months as the future remains somewhat uncertain. Which is easier said than done, given the itis problems, and the weaning off steroid problems.
Itis number 1, the killed off thyroid, is now adequately managed through the daily ingestion of 100mg levothyroxine.
Itis number 2, the kidneys, has miraculously largely resolved itself through time and the slow wean of steroid support. My latest blood test showed creatinine of 79, something I could only have dreamed about in September when this started.
Itis number 3, the lungs, are still a problem upon exertion. I can’t run, which is hugely upsetting, as that’s always been my go to way of dealing with stress. And as anyone on one of these journeys knows, there is quite a lot of stress involved. I can’t walk quickly, I get out of breath on hills and on long flights of stairs, and I find it harder in cold weather of the sort we have at the moment. However, I was offered some hope on this one. The scan showed the ‘ground glass opacities’ had resolved with no scar tissue left behind. So with time and exercise, I should be able to improve my lung capacity.
Itis number 4, the bowels, aren’t too bad. This one mainly manifests as a lot of wind and abdominal pain, some, but not all mornings. Rich foods and the sorts of foods that normally generate wind are implicated here. So I can either restrict my diet or just put up with it, at the moment I am mostly doing the latter.
Itis number 5, the nerve pain, is irritating and uncomfortable rather than painful. At the moment, it’s just the one nerve. It does however react to certain movements and limits what I can do. I also enjoy swimming and it would be my go-to to help resolve the lung issue, except that the pull part of the stroke immediately sets it off. I am going to see my pet physiotherapist tomorrow to get some input on how to relieve it and manage it, having been reassured the nerve issue isn’t caused by cancer in the spine.
I remain keen to complete the wean from steroids. There is the concern that this will make any or all of the itises worse. The medical team are also worried that my adrenal function won’t kick back in easily given how long I have been on steroids, so I have got to go very slowly and carefully. Tomorrow I reduce to 7.5mg per day. Hopefully I can then move through 5mg, 2.5mg and 1mg, before stopping altogether. Hopefully all in good time before my next scan in April and whatever follows that.
