I’m going to do what’s probably quite unusual and actually type out the scan report. This is verbatim with my explanatory comments in square brackets. This is to highlight how far I need to get but also how far I’ve come, plus I feel it’s actually a very good report, as it doesn’t contain much jargon and is easy to understand.
CT Head Thorax Abdo Pelvis with Contrast
Metastatic melanoma. Multiple brain mets. ? Improvement of cerebral oedema [inflammation surrounding the tumours in the brain]. Re-staging CT TAP. [A CT from the neck down]
Comparison was made with previous CT brain dated 30/12/2015 and CT TAP dated the 24/11/2015
Multiple widely scattered intracranial [brain] metastases [cancer which has spread] again noted with no difference in number, size and distribution. The oedema [swelling] around most of the lesions remains stable with no definite evidence of improvement on imaging. Brain appearances completely stable.
In the lungs there are stable bronchiectatic [abnormal widening of the airways which increased the risk of infection – presumably because the tumour stretched the airways then it shrank] changes at the right lower lobe and the solid nodule distal to those has decreased in size measuring 1cm in the current study from 1.5cm previously. No new lesions seen. Pleural spaces are clear. No abnormal thoracic [chest] lymphadenopathy [it’s talking about swollen lymph nodes which are typical place for cancer to spread to first]
Below the diaphragm [in the abdomen] disease in the liver is stable. Marker lesion in segment VIII [jargon – for somewhere] measures 3cm as before and the largest lesion in segment VI measures 3.6cm previously 3.7cm. Smaller lesions appear stable as well. No new liver lesions. No intra or extra pattern dilatation.
Disease in the spleen appears less pronounced with marker lesion in the posterior [back of the] spleen measuring 1.6cm previously and 2cm and another lesion that was previously seen in the spleen anterior lay not visible in the current study.
The pancreas adrenals and both kidneys appear normal. Small and large bowel are grossly normal in this non-dedicated study. No evidence of peritoneal disease [the membrane that covers the abdomen]. No evidence of abnormal retroperitoneal [space at the back of the abdomen] or pelvic lymphadenopathy.
This is where we are at.
The reason the blog is called “Of Brain” is I do not want people jumping the gun and thinking everything is going to be ok. The brain is still the concern. I am still very much unwell. I’m at my brother’s house, tired, worn out and having intermittent headaches, wondering when or if I’ll need to be admitted into hospital again. The cancer in the head almost killed me and as of last Wednesday they were considering withdrawing active treatment from me and just giving me palliative care, that is how bad it was. With my family, Alice, Georgie (my fiancée!), Matt and Rachel, left that night wondering if I would be able to speak again and if I’d survive the next few days. However I was given high dose steroids to reduce the oedema (eluded to on the report). The steroids worked clinically and by the end of the next day I was back to where I was 3 weeks before. Listening to all their stories, they as frightened as I was, I just couldn’t verbalise it at the time, fortunately I was so drowsy I don’t remember much of the day. What I’d inadvertently done is one rapidly got worse, as I’m young, but perhaps missed the warning signs that things were getting that way, like vomiting and sleepiness. As I was told that this could be due to the radiotherapy I was having and I was eager to keep the steroids low as requested.
After 5 days of high dose steroids, the enigma is why am I so much better than the scan. My Cancer Nurse Specialist called me Lazarus, fittingly as I rose from the dead, as she reads the blog she actually got the update on New Years day at home. As you’ve read, you can see the head part of the report actually shows no change from the last scan (that day), at least there wasn’t an increase in the oedema or tumours, but no change. This is confusing as you’d expect a change. When it came to this I said to the Prof “I’m a complicated patient” of which he replied “you’re not the worst SHO (Dr) I’ve ever had”. It is a major cause for concern as the oedema (inflammation) could easily bounce back as I begin to wean the steroids down. We don’t know how much of the oedema is related to the radiotherapy or why it is so resistant. Things do not always correlate clinically (as in my symptoms) with the radiological findings (i.e. the CT), but of course, I prefer the way it is, but reassuringly I’d like both.
Hence then the tentative reasons to be optimistic, that I eluded to on Facebook. The Prof, when I saw him Monday afternoon, gladly announced that I’d had shrinkage in the lung and spleen. Also the disease is stable in the liver, both of which I was hopeful for but did not want to jinx anything by saying it too loud. The reason for being hopeful was firstly I’d not had any liver capsular pain and that was one of the lesions growing fastest post Dabrafamiracle. Apart from when the registrar in UCLH prodded me a bit too fiercely and once at Georgie’s. So I didn’t think it was gone, but I was under the impression that it had at least stopped because it hadn’t become constant. Then there is the lung, which I was more confident about, as I’d had a chest X-Ray the week before which I’d seen and felt “there’s not really a tumour there”, but as the CT is more sensitive there is, but it’s now 1cm, from 1.5cm post Dabrafenib.
I requested the CT below my neck, I think they would have done one anyway, but I took the risk, I had enough evidence to suggest that it would be an optimistic result, that by having room to be optimistic and my obvious clinical improvement, that it hope it means it would be very hard for them not to give me the next dose of Pembrolizumab. To put it simply doing the CT of my body was very helpful as it shows one very important thing, I responded to one dose of Pembrolizumab at least from the neck down and that’s despite taking steroids for most of the first dose, but not all.
This means we need to plough on with the Pembro, but I need to try and get the steroids down very slowly first, as we’re very worried, especially me, becoming critically unwell again. The other issue is pseudoprogression. This is when the T-Cells have been switched on again by the Pembro and infiltrated the tumours in order to kill them, but this can cause a huge swelling and can be awful for the patient particularly if in a closed and vital organ like the brain.