CANCER CHARITY GIST SUPPORT UK CELEBRATE THE NICE APPROVAL OF REGORAFENIB FOR GIST CANCER PATIENTS
Today GIST Support UK, the key charity specifically focused on combating GIST (gastrointestinal stromal tumour), celebrated the NICE decision to approve regorafenib, a life extending drug, as a third line treatment for GIST cancer patients in England, ensuring that they have access to the same key drug as provided to patients in Scotland and Wales.
Nic Puntis & Jayne Bressington (on behalf of GIST Support UK) said:
“We welcome the NICE decision to recommend access to regorafenib as it offers greater long-term treatment options for patients with GIST. Importantly, GIST patients in England will now have routine access to this important treatment, joining patients currently living in Scotland and Wales.
Thank you to everyone who worked so hard to review and approve regorafenib.”
GIST(Gastro-Intestinal Stromal Tumour) is a rare form of cancer which does not respond to the more usual cancer treatments of radio- or chemotherapy. Before the introduction of specialist drugs, the only recourse was surgery. With the more recent introduction of TKI drugs (ie, Tyrosine-kinase inhibitors), options improved.
The first line of treatment, which I have been on for three years now, before and after surgery last February, is imatinib (UK trade name Glivec. However, this is not effective for all varieties of GIST, and even where it is effective, there often comes a point where it is no longer so. In such cases, the second line of treatment is a drug called sunitinib (trade name Sutent). Where this too is not effective, or loses its effectiveness, the third line of treatment is regorafenib.
Until now, only the first two, imatinib and sunitinib, were approved for NHS funding in England under NICE rules. Regorafenib has been available only under the special arrangements of the cancer drugs fund (and even that was achieved only after intensive lobbying by GIST Support UK).
Today’s welcome news means that in future, this life-saving drug will be more securely available.
I spent yesterday in Cardiff, for a patients/carers meeting with GIST Support UK.
GIST (“Gastrointestinal Stromal Tumour”) is a particularly rare form of cancer, which I was diagnosed with just over three years ago. Because it is a sarcoma, not the more usual form of cancer, carcinoma, much of what is popularly understood by the term “cancer” simply does not apply. Because it is so rare (even most GP’s and nurses have never heard of it), it really needs to be treated in specialist sarcoma centres. For all these reasons, people who have been diagnosed with GIST are in particular need of support – to meet and hear from others in similar situations, and to keep abreast with the latest developments in research and treatment for the condition.
GIST support UK provides this support in different ways. Most obviously, it has a website which summarises the key information currently available – and lists the specialist centres with appropriate expertise in treating the condition. It also has an email Listserve group, where people with GIST can tell their stories, ask for or offer help and advice, or report on new developments from the world of science. We also host a patients’/carers’ meeting twice a year in different parts of the country, where people can get this personal contact face to face – and get reports on the best current knowledge, from experts in the field.
We do not simply sit back and receive the result of research – we also contribute to it, directly. In conjunction with the Royal Marsden, we host a GIST tissue bank, where tumours that have been surgically removed from people with GIST, are stored and available for clinical research. We also directly fund researchers working in the field, and pay for patient advocates to participate in academic conferences, contributing the voice of patient experience. It is notable, for instance, that one recent academic paper on the current best practice by leading UK researchers, included in the acknowledgements, the value of contributions by two of our leading members.
I came across the website from a Googe search immediately after my initial diagnosis. I then signed up to the Listserve group, which I have both learned from and contributed to, and have since attended three of the patient meetings, to my immense benefit. I was flattered at yesterday’s meeting to be invited to join the board of trustees.
All of this good work, inevitably costs money., for which we have an active fundraising team. I am not a great fundraiser myself, but from time to time I will be sharing information on GIST Support UK fundraising activities. When I do, please consider contributing.
This article from The Times describes the remarkable drug that I’ve been taking for my (very rare) form of cancer – GIST, or Gastro Intestinal Stromal Tumour.
Fortunately for me, I’m in the sub-group with the KIT gene that the article says does particularly well on imatinib. My experience was that I was originally diagnosed almost three years ago with a massive tumour (26cm x 19cm) wrapped around my stomach. That was considered too big for surgery, and this particular form of tumour does not respond to either radiation or conventional chemotherapy, so I was put onto imatinib to reduce its size.
All I did was take one tablet daily with my breakfast. Some patients experience a range of nasty side -effects, but I was lucky: side-effects were minimal, with very little impact on my daily life. Regular 3-monthly scans immediately showed that the drug was having the desired effect, with definite shrinkage. However, there came a point where shrinkage ceased, with the tumour down to 19cm x 15cm: still big, but much more manageable. At that point, surgery was scheduled for February last year (2016).
Following surgery, I continue to take the drug, now to guard against regrowth. Every six months, I have a CT scan to check that indeed there is none. The last, in April, still showed all clear. The next scan will be in October – when I hope, that will still be the message.
Drug turns cancer from deadly disease to manageable illness
Cancer could become a manageable chronic disease like HIV for many patients, according to scientists running a drug trial.
Researchers found that a drug for advanced cancers of the gut and stomach kept a large minority of patients alive and mostly symptom-free for at least ten years after the start of the trial.
Experts said the “remarkable” discovery was a foretaste of a future in which people diagnosed with aggressive tumours that would once have been a death sentence may be able to resume their old lives for many years.
Since the turn of the millennium doctors have widely adopted a new class of chemotherapy known as targeted drugs, which attack a particular gene or protein that is known to be essential for the cancer’s development.
However, these medicines tend to be costly and usually extend the lives of patients by only a matter of months as the tumours mutate to resist their effects.
Not ” a little” but “a lot” of help from my friends.
When I wrote recently about my late wife’s struggles with mental health, and her final, nearly completed, suicide attempt a friend who had known us both well at that time, wrote to me, saying,
“..how you coped with it I will never know!”
My response was
“how I coped with it” – one day at a time, and with a lot of help from my friends.
I wrote previously about what was (almost) the end of our difficulties together, but there was also the beginning. In some ways at least, this was almost more difficult, because it was all so new and unfamiliar terrain, and because the children were so much younger, aged just 18 months and three years. I could not have come through that time without extensive support from both friends and family.
This support was crucial again, through all the crises during the marriage, and at its end. After the marriage finally broke down, there was the help of a support group for divorced people: I was at home one afternoon, when a stranger appeared at the door. She was the Polish mother of a daughter’s classmate, and instructed me, forcefully, “You come Divorce Workshop Group!” So I did – and found it immensely valuable, for the hard information I gained, and for the friendships formed.
Later, when I moved from to Johannesburg to Cape Town and finally came out to myself and then to others that I was indeed gay, again I found that simply meeting other gay men, and forming friendships with them, was helpful – as was my membership of a gay/lesbian support group, “Gasa Rand” (i.e., Gay Association of South Africa, Witwatersrand region). I joined their committee and introduced an adaptation of the tools used by the DWG, that I had found so helpful for divorced people in Cape Town. These proved to be equally successful, in supporting gay men and lesbians in Johannesburg.
Still later, after moving to London, I was faced with the challenge of coping with living once again as a single gay man, and attempting to reconcile the apparent contradictions in being both gay, and Catholic. During this time, the support, resources and regular LGBT-affirming worship services of what were then known as the “Soho Masses” were yet another lifeline.
More recently, in my journey with GIST, it’s been the GIST Support UK who have been invaluable, with the information on their website, the listserve email group, and their biannual conferences. Conversely, during my major surgery last February to remove the tumour and with it my stomach, I was acutely conscious of the support and prayers of this GIST support group, but also of my LGBT friends in queer faith communities worldwide, as well as my local parish community.
I am now more conscious than ever, that in times of difficulty, I “get by with a little a lot of help from my friends,”
In the early, happier days of our marriage, I enjoyed reading aloud to my wife. Much of our honeymoon was spent reading Dickens’ Barnaby Rudge. Later, there was more Dickens – I remember specifically, Martin Chuzzlewit. For our first Christmas together, we both woke up with vicious colds, and we spent the day in bed with me reading aloud her gift to me – a set of Moomintroll books which I’d never previously encountered. Later, I read through The Hobbit and Lord of the Rings. The latter, I effectively read twice: once to her, and because I found the pace of reading aloud too slow, I began to read ahead for myself, while continuing to read for her. Toward the end, I ended up reading right through the night to get to the conclusion.
With the arrival of children, reading aloud was a major part of my childcare routine, especially at bedtime. I regret to say though, that some of my choices were far too ambitious for children of their age. For instance, I introduced them to The Hobbit very young – and then, ridiculously, to The Lord of the Rings. We got about half way through, but never completed it. I’ve not picked it up since.
(It’s not for nothing that Joyce describes memory as “fadographs”. Memory is intrinsically fallible. What follows is not necessarily an authentic account of what happened – but it is a meticulous account of how I remember it.)
By this time, Marie-Jeanne been through numerous bouts of suicide attempts and threatened suicide attempts. However, she’d also been through an extended period of therapy with an excellent psychotherapist who had assured me that she was well on the way to recovery. He had also advised me against the danger of allowing myself to be manipulated by her (possible) emotional blackmail. When I received a telephone call from her at work, I was initially reluctant to be drawn.
She said to me that I really needed to come to home immediately, for the children’s sake (just as I had sometimes done before, in times of emergency. I was blessed to be working for an understanding and supportive employer, The Cape Argus newspaper). Trying to avoid being “manipulated”, I resisted, arguing that I had a job to do, which I could not simply abandon. Her response was that it was essential for the girls’ sake that I did get home ASAP, as she “would not be there”. Still I demurred, and hung up.
Thinking about it thereafter, I reconsidered. Something in the exchange led me to think that it was perhaps more serious than previous such calls. I did not then know what she meant by “would not be there”: perhaps she simply meant she would be going away, as she had done once or twice before, without warning. Whatever the case, I concluded that I should indeed go home. I spoke to my immediate boss, and got permission to go immediately. (I think he even drove me home). When I got there, I found six year old Robyn sitting on her suitcase outside the front door, unable to get in. Barbara was home from school a little later, and I made some excuses for their mother’s unexplained absence.
When she was still not home by evening, I made supper as usual, got the girls bathed, and ready for bed. We spread out on the main bedroom double bed, one on each side of me, ready to read from The Lord of the Rings, “The Fellowship of the Ring”. (By memory, the passage in question was the journey through the mountain of Moria, just before meeting the encounter with the Balrog – but memory could be playing nasty tricks on me).
What I definitely remember as accurate, is that as I picked up the book, instead of a bookmark I found a note from Marie-Jeanne, placed where she knew I’d find it:
“I’ll be under the floorboards”.
I knew exactly what she meant. In the centre of the house was an open plan room, with a trapdoor in the centre. Underneath it was a space not quite deep enough for a cellar, but which invite thoughts of conversion into some sort of usable space. I immediately realised the gravity of the situation – but had above all, to avoid alarming two young girls, already confused by their mother’s absence.
I found an excuse to put down the book, saying I’d remembered I needed to phone a friend up the road. Jean and her husband Allen were committed Baptists, and Jean had been very friendly and supportive to Marie-Jeanne, with two children just the age of our two. As circumspectly as I could, I explained the nature of the emergency and the need for urgent help. I told the girls that it was they (not I) in need of help, and drove them up the road to Jean and Allen. Once their, I gave my front door key to Allen, who slipped away, while Jean and I put all four children to bed.
I then returned to the family home- where I found an ambulance already on hand. busy taking Marie-Jeanne on board . Allen explained that on lifting the floorboards, he had found her unconscious, with assorted empty pill bottles around her, and her head enclosed in a plastic bag, tied around her neck. We were told by the ambulance crew that if she’d been found just a short while later, it would have been all over.
“Finiche! Only a fadograph of a yestern scene.” (Finnegans Wake I, 7)
“And after that she wove a garland for her hair. She pleated it. She plaited it. Of meadowgrass and riverflags, the bulrush and waterweed, and of fallen griefs of weeping willow. “(Finnegans Wake IV, 207)
So – she is gone, my wife that was, the mother of my daughters.
I heard the news last Friday evening, via two emails from my daughter Robynn.
Just fyi – Mom is in hospital, expected to die within a few days. It’s *probably* cancer, but she refused to go to a doctor for so long, by the time she was admitted she was far too weak for them to do the usual tests, so it hasn’t been confirmed. In any case she’s in a very bad way and apparently now shutting down.
Just thought you should know.
followed a short time later by
She died 3 hours ago.
The suddenness of her passing, as a result of having refused to see a doctor, was no surprise. Later, Robynn shared her thoughts in a blog post, including this,
You can’t grow up hearing constantly that your own childish neediness was the reason she’d tried to kill herself, and the reason she still wanted to, without sooner or later thinking “Well then – get on with it!”
Ever since, my mind has been turning repeatedly to that time, thirty five or so years ago, when her suicide attempts and threats were a constant part of our lives together. It’s ridiculous of course, to have blamed the girls for her mental health difficulties – at the time of the final, very nearly completed attempt, Barbara was just barely eight years old (almost exactly the age that my granddaughter Claudia is now), and Robynn only six. Nor do I accept that I was myself “to blame”, as she also would have alleged. However, with hindsight I must accept that I was indeed part of the problem.
That’s not how I saw it at the time of course. Throughout her many difficult periods, I had done my best (as I saw it), to support her in every way I could. Because she had difficulty coping with too much stress, I had taken on responsibility for pretty well all the cooking and shopping, and as much of the childcare as I could, when not at work. When she was willing to see therapists for her depression, I took time off work to get her to them, saw them with her when required, and attempted to comply with all their recommendations. When things became too much for her, I did what I could to ease the pressures and soothe her distress. When it all tipped over the edge, I was the one that got her to psychiatric casualty at Groote Schuur hospital, a place I got to know far too well. Throughout, I also tried simultaneously to maintain as normal, calm a life as possible for the two young girls, in situations that were very far from normal. In my own mind, I was doing everything I could to be part of the solution.
The reality I could not then see, was that while not the “cause” of the difficulties, I was very much part of the problem. As a gay man, I should never have proposed marriage in the first place – something I had done at a ridiculously young age, impulsively and without proper forethought. When we married a few years later, it was on a precarious financial footing, and we never developed a sound, partnership based approach to managing household finances. Two young children arrived too soon. The first pregnancy and birth were difficult – with post partem depression exacerbating an existing mental health difficulty, quickly compounded by a second pregnancy. As the years went by, the marital difficulties mounted, and depressive episodes, emotional meltdowns, threats of suicide and actual attempts became a constant in our lives. She came to demand a divorce, which I refused. Although no longer by then a practising Catholic, I clung to the myth that marriage vows are sacrosanct, and must be forever. How wrong I was. It’s little wonder then, that feeling trapped in what had become a destructive marriage, she chose to get out in the only way she could.
The time has come that I need to write about these times. I do so, not with any intent to complain about or to disparage Marie-Jeanne, but just to describe what it was like, especially as it concerned my daughters. They lived through some extraordinary conditions in their childhood, but somehow not only survived, but in the end thrived. Both are today strong, capable and independent women and excellent mothers – in spite of their parents. I salute them.
“These Fragments I Have Shored Against My Ruins” (TS Eliot, The Waste Land: What the Thunder Said)
It’s been a momentous, difficult year. No, it’s not “New Year”, the traditional time for these reflection, but I’m not thinking the calendar year. I’m considering the year from February to February: more specifically, the year from February 9th 2016, the day I lost my stomach. That’s a long story, which I tell elsewhere, but the process has been rather prominent in my consciousness. To that, came the anguish first, of the Brexit vote here in the UK, continuing “Zuptagate” horror stories in South Africa concerning President Jacob Zuma and his cronies, and finally the horror of a Trump presidency in the USA. Throughout, the entire world has seen the trauma of continuing war in the Middle East, with the resultant plight of refugees and terror elsewhere.
A year ago today, I checked in to the Royal Free Hospital Hampstead to have a stomach GIST removed, and with it, the whole of my stomach and spleen: time now to look back, on the year since – and before.
It all began some eighteen months earlier, in the summer of 2014, when I began to experience what I incorrectly described as “stomach” pains – and the GP described more accurately as abdominal pain. He diagnosed a bowel complaint, diverticulosis, and prescribed antibiotics. This brought some relief, but some residual pain remained – so another course of antibiotics. After the third such attempt, he said we needed to take a closer look inside the bowels, and referred me (under the “two week rule” to a bowel specialist at Royal Surrey for a colonoscopy. I had not previously heard of a two week rule. When I looked it up later, I found that this applies whenever there is any risk of cancer. Alarm bells were ringing. The consultant agreed with the GP diagnosis, but also that we needed a test to check, just to “confirm the diagnosis”. However, instead of the colonoscopy, he recommended a CT scan, because that would show what was going on outside the bowel, as well as inside it. That decision was of major importance.