Funding Breakthrough in GIST Cancer Treatment

Good news reported in a release by GIST Support UK:

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.

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GIST Support UK: Cardiff Conference

GIST and Imatinib in the News

One year on from GIST surgery: (1) Diagnosis and early treatment

One year on from GIST surgery: (2) Surgery

 

GIST Support UK: Cardiff Conference

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.

Related posts:

GIST and Imatinib in the News

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.

Full report: The Times & The Sunday Times

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One year on from GIST surgery: (1) Diagnosis and early treatment

One year on from GIST surgery: (2) Surgery

“With a little help from my friends..”

Scrub that.

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,”

One year on from GIST surgery: (1) Diagnosis and early treatment

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.

Under the two week rule, everything had moved quickly to the date of the test – and much more quickly thereafter. Continue reading “One year on from GIST surgery: (1) Diagnosis and early treatment”