I’m a rebel at heart. Rules are made to be broken… even, nay, especially, my own strictures, such as the one about updating this blog at least once a month. I’ve been taking some stick about my online absence. I’m not sure why I haven’t posted much this year. It could be down to the strange cycle which the six-week Sutent schedule imposes; your energy seeps away during the four weeks of popping pills, culminating in a veritable bedfest, and you then have a few frenetic Sutent-free weeks, rushing around seeing friends and family, trying to make up for the lost time and being oh, way too busy to pause to blog. Then again it may be that I’ve immersed myself so fully in distractive activities that I’ve found it impossible to pull my nose out of my kindle or switch the blu-ray player/iphone off (Robin could feasibly sue for divorce naming the Tetris app as co-respondent). It might be that after over a year and a half of ruminating on my desperate fight for survival and my, oh so sad, plight of imminent demise I feel slightly embarrassed to erm, still be here, ruminating on my desperate fight for survival.
I’m that new kind of patient; the terminally ill individual whose illness starts to seem more like a chronic condition than a fatal disease. All thanks to the new life extending drugs. Sure, the oncologists would politely clear their throats at this point, take me aside and remind me not to get carried away, that Stage IV kidney cancer IS terminal, that while medical advances are being made they won’t benefit me (reliant as I am on the cash-strapped NHS Scotland) and, that, unfortunately, the ‘miracle’ cure has yet to be discovered. I know that but I’ve also learnt that it is impossible to live your life at a dramatic pitch. Yes, our lives have been transformed in undreamt of, unwanted ways. Yes, I am now reliant on my husband to an independence-belittling degree but these days we’re pretty placid. We’ve traversed through the churning waves of denial/anger/grief/ bargaining/ ‘splurge all your savings on fancy restaurants and Clinique cosmetics’ and popped out in calmer waters.
Of course that current inner tranquility has been aided and abetted by our own minor medical miracle – and as I always argue that this blog is not just a navel-gazing, gossip column of ‘Where Sharon Went For Lunch This Month’ but hopefully also a helpful guide to other renal cell carcinoma patients of what to expect, particularly papillary rcc patients who have less options and are badly served by Big Pharma- I do feel slightly guilty about not updating on my experience with Sutent. Otherwise known as ‘my precious.’
As the title of this post implies Sutent has given me not the desperately hoped for stability but has actually turned the clock back on the cancer within me, with an overwhelming result of SHRINKAGE! Sure, it’s not the Holy Grail we cancerites lust after of a NED (No Evidence of Disease) diagnosis but it is definitely the next best thing and more than I dared hope for from this drug which, while being the gold standard for clear cell kidney cancer dudes, rarely delivers shrinkage for papillary patients.
After two cycles of Sutent on the full 50mg dosage (yay, I am HARD CORE!!!) a CT scan at the beginning of February revealed I had considerable reduction of disease. It was amazing to finally see a radiographer’s report. For the first time in my Stage IV experience I had a clear(ish) statement of my status. The past year has been one of confusion and contradictory opinion from the medical profession as to the proliferation of metastasis in my body.
This report listed black and white comparisons between the CT scan on 29th November (taken seven days after starting Sutent following two-months of limbo after Afinitor) and a CT scan from 7th February 2012. True, I was rather aghast to discover the damned cancer had more of a grip on my organs than I had known about and it was troubling to find out just how rapidly it had advanced during the drug-free period I had been forced into while the NHS Scotland bureaucrats argued over my right to treatment (see earlier post).
We were horrified to discover that my biggest tumour, the one inextricably entangled in the ileopsoas muscle, the source of my debilitating pain, necessitating the daily ingestion of a rainbow of opiates, had reached the frankly terrifying diameter of almost 7cm at the end of November. Robin and I also paled when confronted with the evidence that the cancer HAD reached my lungs but we were very much heartened by the news that Sutent has been reducing much of the disease to rubble.
I won’t reproduce the report here. I may have described it as ‘clearish’ but that is just relative to the usual impenetrable medical lingo. I recently came across an American blog by fellow rcc patient, Chris Battle. His sly satire makes mincemeat of rcc and unlike my meanderings he is also genuinely informative. He dissects the jargon of radiography reports with surgical precision in his post ‘Of Diseased Livers and Uteri; How To Read a Radiology Report‘.
I’ve translated mine into the following bullet points, giving all measurements mentioned;
- tumour in the ileopsoas muscle has decreased from 6.7 x 6.8cm to 6.1 x 5.8cm,
- tumour at the site of the nephrectomy has decreased from a diameter of 1.6cm to 0.9cm,
- peritoneal tumour in the vicinity of the distal descending colon has decreased from 4.2cm on the axial plane to 2.2cm,
- peritoneal tumour has decreased from 2.7cm to 2.0cm,
- peritoneal tumour in the vicinity of the hepatic flexure of the colon has decreased from 2.5cm to 1.6cm,
- tumour in the lower lobe of the right lung has ‘almost completely resolved’,
- tumour in the middle lobe of the right lung ‘is significantly smaller’,
- tumour in the lower lobe of the left lung is stable compared to previous scan,
- the right paratracheal lymphadenopathy is stable compared to previous scan,
- the right hilar lymphadenopathy is stable compared to the previous scan.
Amazing eh? I have so longed to hear ‘shrinkage’ over the past year. So, I apologise for not blogging about the good stuff. I was too busy celebrating. At the end of February we had an incredible lunch at Room in the Town restaurant (a nod to those of you who read this purely for the culinary tips; expect great food, service and value and best of all it is BYOB). It was a triple celebration, toasting the shrinkage, my birthday (45th, hurrah!) and our first wedding anniversary. We were just shocked and awed by the efforts our family and friends made to share the day with us and we had a hilarious time. We were also showered with gifts and largesse and are humbly grateful to everyone (an impressive twenty two) who made the effort. Love you all.
A week later we headed west to celebrate the return of our darling friend and bridesmaid Karin from Doha. She threw a fabulous dinner party in Glasgow and we had an incredible evening with her and other close mates. It was so good to greet Karin with some good news for a change! It was a whistle-stop visit for her and by the time she had flown back a few days later my socialising spate was over as fatigue really did floor me for the last ten days of my third cycle of Sutent.
Side effects of Sutent
I have, touch wood, been very lucky not to experience the side effects I dreaded on Sutent. I haven’t been sick. As I take so much morphine I haven’t been troubled by the typical bouts of diarrhoea. My hands and feet have been mercifully free of the sore, red blisters (Hand Foot Syndrome) so many experience and while some of my eyelashes and eyebrows have turned white my hair hasn’t. (The ugly silver roots I am sporting at the moment are just evidence of my normal grey coming through as I’ve been nervous of dying my hair while on the drug). My tastebuds haven’t been destroyed although they do become ludicrously sensitive in the final few weeks of the drug, returning to normal a few days into the drug break.
My gums bleed incessantly so I chew fruity gum to dispel the constant stale, iron taste in my mouth. My eyelids swell monstrously and my face becomes moon-like in the final fortnights. When I walk the sensation is that my huge head is bobbing along, attached to the rest of my body by a piece of frayed string (think Cat Face, Weebl’s incomparable online animation).
Vanity would normally prevent me from publishing this unflattering photograph (of me! Paul looks delovely as usual) but I’m trying to honestly document this experience, fat face, grey roots and all. I’ve had some pretty chilling experiences of reflux. It’s a relatively harmless side effect but the incidences have freaked me as they have spooked me awake during the night.
My main side effects have been hypertension and a low thyroid count. Sutent can play havoc with blood pressure so I indulged in a pricey automatic BP kit and periodically play nursey on myself. It’s been highish (150/100) but not disastrous. I’ve also had a very low white blood cell count, dropping to 1.4 by the end of the third cycle (if you have less than 1.5 you cannot go ahead with chemotherapy). This has contributed to intense fatigue. Actually fatigue is too insipid and half-hearted a word to describe the leaden exhaustion which increases as each day of the 28 day pill cycle passes. Last month there were days when I slept from midnight until 5.3opm the following evening, surfacing from my coma state only for toilet and pill breaks.
When I did get up I was positively lizard like. Inert. My heartbeat measured 56 bpm which would be fantastic for an Olympian athlete but not so much in my case. I had to draw on every reserve of strength to limp into the shower. I focused on the reprieve of the two-week break although a few days into that I was stricken with labyrinthitis which made the world spin around and put paid to any partying, although I was immensely cheered by a visit from my Aunt Marion and cousin Alex during the recent surprisingly sunny spell. Incidentally, for those of you aware of rcc’s appetite for cerebral treats we are confident this lack of balance is not connected to brain mets as I have no other neurological symptoms.
I’m not complaining about the downsides of the drug. Far from it. Strikes me that a a few days of hibernation is a very small price to pay for the results I got and hope to continue to achieve. Such side effects are mere bagatelles compared to the distress most chemo and radiation patients endure. When I described the tiredness to my oncologist Dr McLaren at the Western General on my most recent visit he did voice ‘quality of life’ concerns and discussed reducing the Sutent to the more usual 37.5mg dose but he understood and endorsed my determination to continue on the 50mg dosage. I take three pills, one 25mg and two 12.5mg at the end of day and have been cautioned to reduce dose if the side effects are too overwhelming.
Sutent works best at the beginning. Over time its effects diminish. I had hoped to complete at least one cycle at 50mg. Following the euphoria of the scan my concept of ‘beginning’ shifted. The promise of that last scan offers such a tantalising lifeline.
Speaking of lifelines the eagle-eyed amongst you may have spotted in the pic above that my ‘lifeline’ has a distinct gap and then restarts on a parallel line. In palmistry this is indicative of gloom and doom but Robin recently tenderly traced the line and postulated that, in my case, the gap might mean a fresh start after an illness. Of course we don’t place credence in chiromancy or other desperate hope systems but for now we are firmly putting our faith in Sutent. Our hope is that the big guns of a 50mg dose will obliterate my cancer into dust.
PS: This is a week of anniversaries so salutations and birthday hugs to my dear father-in-law (yesterday), my fab dad (tomorrow) and my gorgeous pal Helen (Saturday).