Finding Chemo: Help James Beat Brain Cancer
Donation protected
One day in March 2015, I came home from an early Pilates class to find my then boyfriend James had thrown all of my socks into the bin. This wasn’t some attempt at trying to turn me into a barefoot hippy (I’m already one of those at heart!) We assumed he had been sleep walking, which he had done before and thinking no more of it we went out to lunch with a friend.
In conversation, I mentioned that we had been to an appointment the day before, but James seemed to have no recollection of it, despite him driving 3 hours there and back. Something was clearly up, but we just put it down to him having a bad cold and working too much. The following month all became clear…
On 20th April I woke to find James having a seizure on the floor, and James was taken to hospital. The Emergency Department doctor said James needed an MRI and was no longer allowed to drive, and after some checks we were sent home. At first we essentially just put the seizure down to too much caffeine and the umpteen undergraduate essays that James had been marking intensely the day before!
Over the course of the week he started to have vacant moments where he would lose his power of speech. By the weekend, these moments had increased in frequency. I am lucky that James has an exceptional group of friends from his service in the Army with The Rifles (formerly the Devonshire & Dorset Regiment), one of whom is now a paramedic. He took us back into hospital where James had a CT scan, and at 3am in the morning we received the news that James had a 5.7cm tumour in his right frontal lobe - we named it Kenneth.
This was obviously a huge shock for us both. Unable to sleep I had been looking James’ symptoms up online all week and was convinced he had a neurological condition. Despite losing my beloved Nanny Joy to a brain tumour three years earlier, the idea that it was happening again had not crossed my mind.
In July 2015, aged 29, James had a successful awake craniotomy under Dr James Palmer and anaesthetist Dr Justine Elliot at Derriford Hospital, and Kenneth the brain tumour was evicted. The pathology of the tumour showed that it was a Grade 3 Anaplastic Astrocytoma which is a high grade cancer; with a prognosis of 3-5 years before recurrence. James had follow up radiotherapy and concurrent chemotherapy daily for six weeks, followed by a further course of chemotherapy lasting a full year, including during our wedding. He coped incredibly well with the treatment, and took it all in his stride.
We got married in a small, perfect ceremony in Malta in 2016, joined by our close family and friends, and both went back to our work and studies. James was monitored with 3-monthly MRI scans which was always a nerve-wracking time – ‘scanxiety’ as it is referred to by the brain tumour community! Despite the appearance of Kenneth, James went on to complete his PhD in International Relations, and I am extremely proud of his passion, tenacity, and determination.
However, in December 2019 our lives were turned upside down for a second time. A routine MRI showed a recurrence of cancer. Kenneth Jr. was evicted in March 2020 and we were lucky enough to have the same fantastic surgeon and anaesthetist team. This time around hasn’t all been plain sailing though. Post-surgery James lost use of his left side (thankfully significantly recovered), and the pathology results show that the cancer has advanced to a Grade 4 Glioblastoma (GBM), the most aggressive type of brain cancer.
The news has been devastating to us. Glioblastoma has a shocking prognosis, with the average survival from first diagnosis being just 12-15 months. As James received radiotherapy back in 2015, it is no longer a viable treatment option for him without the risk of significant harm. Alarmingly, the April post-op MRI has revealed regrowth already.
We cannot believe what we are facing, and the recent Covid lockdown has made things even harder to process. My James is witty, intelligent, kind-hearted and fiercely loyal. He is a veteran of Afghanistan, serving with The Rifles, as part of 3 Commando Brigade (on Operation Herrick 9), and an accomplished associate lecturer in International Relations and Politics at the University of Plymouth. We are at the start of our married lives and careers, but instead we are seeking every possible treatment option we can. When James was first diagnosed he told me that the two important things on his bucket-list were to make me happy and to complete his PhD. He has achieved both of those things, but at just 34 years old he has so much more to give and to live for.
Through the NHS, James is currently receiving chemotherapy every month, but Glioblastoma is notoriously resistant to such treatments. He is also undertaking various private treatment protocols, including supplements and repurposed drugs which are thought to disrupt the metabolic makeup of the cancer cells, which we access through the Care Oncology Clinic in London.
What we are appealing for:
We are now seeking immunotherapy treatment options to keep James alive and well for as long as we can. As this treatment isn’t currently approved by NICE in the UK, we will have to fund the treatment ourselves, and travel to Germany regularly. We hope to have tumour sequencing analysis carried out at the CeGaT clinic in Tuebingen, with a personalised treatment created which will hopefully give James a better chance in any rematch with Kenneth III. A second line of treatment, provided by IOZK (again in Germany) isDendritic Cell Vaccine. Early indications show these treatments to hold fantastic promise for extending survival rates.
Unfortunately, such treatment is extremely expensive, even on the non-profit, compassionate basis on which German clinics operate. Tumour sequencing/analysis at CeGaT is 9,900 EURO, with treatment (if shown to be viable for James) at 45,000 EURO. Dendritic Cell Vaccine treatment at IOZK is quoted as costing 3,500 EURO for immunodiagnostic blood sampling; 4,500 EURO per 5-day ICD treatment; 22,000 EURO for 8-day vaccination cycles, with two cycles being foreseen to induce an immune system response. On top of this, treatment necessitates travel and accommodation in Germany every month. If you feel you can help by making a modest donation, sharing this fundraising page, or both, we would be forever grateful.
Nicola (nee Langdon) & James Flint (and Loxley the cat) x
All monies thankfully received will go towards the above treatment costs. Were there to be any remainder monies, this will be donated to the charity Brain Tumour Research, who have a centre of excellence in Plymouth.
CeGaT: https://www.cegat.de/en/
IOZK: https://www.iozk.de/en/
Brain Tumour Research: https://www.braintumourresearch.org/
James after surgery, July 2015
James after surgery, March 2020
James in Helmand, Afghanistan
In conversation, I mentioned that we had been to an appointment the day before, but James seemed to have no recollection of it, despite him driving 3 hours there and back. Something was clearly up, but we just put it down to him having a bad cold and working too much. The following month all became clear…
On 20th April I woke to find James having a seizure on the floor, and James was taken to hospital. The Emergency Department doctor said James needed an MRI and was no longer allowed to drive, and after some checks we were sent home. At first we essentially just put the seizure down to too much caffeine and the umpteen undergraduate essays that James had been marking intensely the day before!
Over the course of the week he started to have vacant moments where he would lose his power of speech. By the weekend, these moments had increased in frequency. I am lucky that James has an exceptional group of friends from his service in the Army with The Rifles (formerly the Devonshire & Dorset Regiment), one of whom is now a paramedic. He took us back into hospital where James had a CT scan, and at 3am in the morning we received the news that James had a 5.7cm tumour in his right frontal lobe - we named it Kenneth.
This was obviously a huge shock for us both. Unable to sleep I had been looking James’ symptoms up online all week and was convinced he had a neurological condition. Despite losing my beloved Nanny Joy to a brain tumour three years earlier, the idea that it was happening again had not crossed my mind.
In July 2015, aged 29, James had a successful awake craniotomy under Dr James Palmer and anaesthetist Dr Justine Elliot at Derriford Hospital, and Kenneth the brain tumour was evicted. The pathology of the tumour showed that it was a Grade 3 Anaplastic Astrocytoma which is a high grade cancer; with a prognosis of 3-5 years before recurrence. James had follow up radiotherapy and concurrent chemotherapy daily for six weeks, followed by a further course of chemotherapy lasting a full year, including during our wedding. He coped incredibly well with the treatment, and took it all in his stride.
We got married in a small, perfect ceremony in Malta in 2016, joined by our close family and friends, and both went back to our work and studies. James was monitored with 3-monthly MRI scans which was always a nerve-wracking time – ‘scanxiety’ as it is referred to by the brain tumour community! Despite the appearance of Kenneth, James went on to complete his PhD in International Relations, and I am extremely proud of his passion, tenacity, and determination.
However, in December 2019 our lives were turned upside down for a second time. A routine MRI showed a recurrence of cancer. Kenneth Jr. was evicted in March 2020 and we were lucky enough to have the same fantastic surgeon and anaesthetist team. This time around hasn’t all been plain sailing though. Post-surgery James lost use of his left side (thankfully significantly recovered), and the pathology results show that the cancer has advanced to a Grade 4 Glioblastoma (GBM), the most aggressive type of brain cancer.
The news has been devastating to us. Glioblastoma has a shocking prognosis, with the average survival from first diagnosis being just 12-15 months. As James received radiotherapy back in 2015, it is no longer a viable treatment option for him without the risk of significant harm. Alarmingly, the April post-op MRI has revealed regrowth already.
We cannot believe what we are facing, and the recent Covid lockdown has made things even harder to process. My James is witty, intelligent, kind-hearted and fiercely loyal. He is a veteran of Afghanistan, serving with The Rifles, as part of 3 Commando Brigade (on Operation Herrick 9), and an accomplished associate lecturer in International Relations and Politics at the University of Plymouth. We are at the start of our married lives and careers, but instead we are seeking every possible treatment option we can. When James was first diagnosed he told me that the two important things on his bucket-list were to make me happy and to complete his PhD. He has achieved both of those things, but at just 34 years old he has so much more to give and to live for.
Through the NHS, James is currently receiving chemotherapy every month, but Glioblastoma is notoriously resistant to such treatments. He is also undertaking various private treatment protocols, including supplements and repurposed drugs which are thought to disrupt the metabolic makeup of the cancer cells, which we access through the Care Oncology Clinic in London.
What we are appealing for:
We are now seeking immunotherapy treatment options to keep James alive and well for as long as we can. As this treatment isn’t currently approved by NICE in the UK, we will have to fund the treatment ourselves, and travel to Germany regularly. We hope to have tumour sequencing analysis carried out at the CeGaT clinic in Tuebingen, with a personalised treatment created which will hopefully give James a better chance in any rematch with Kenneth III. A second line of treatment, provided by IOZK (again in Germany) isDendritic Cell Vaccine. Early indications show these treatments to hold fantastic promise for extending survival rates.
Unfortunately, such treatment is extremely expensive, even on the non-profit, compassionate basis on which German clinics operate. Tumour sequencing/analysis at CeGaT is 9,900 EURO, with treatment (if shown to be viable for James) at 45,000 EURO. Dendritic Cell Vaccine treatment at IOZK is quoted as costing 3,500 EURO for immunodiagnostic blood sampling; 4,500 EURO per 5-day ICD treatment; 22,000 EURO for 8-day vaccination cycles, with two cycles being foreseen to induce an immune system response. On top of this, treatment necessitates travel and accommodation in Germany every month. If you feel you can help by making a modest donation, sharing this fundraising page, or both, we would be forever grateful.
Nicola (nee Langdon) & James Flint (and Loxley the cat) x
All monies thankfully received will go towards the above treatment costs. Were there to be any remainder monies, this will be donated to the charity Brain Tumour Research, who have a centre of excellence in Plymouth.
CeGaT: https://www.cegat.de/en/
IOZK: https://www.iozk.de/en/
Brain Tumour Research: https://www.braintumourresearch.org/
James after surgery, July 2015James after surgery, March 2020James in Helmand, Afghanistan
James (Flinbad, back row-right) with Plymouth Platoon in Afghanistan
On holidays in Malta
Our wedding in Mdina, Malta
Our wedding in Mdina, Malta
On holidays in MaltaOur wedding in Mdina, MaltaOur wedding in Mdina, Malta
At our wedding party in Wadebridge, Cornwall
Loxley cat with the Brainstrust stress brain
Kid James with Captain
Loxley cat with the Brainstrust stress brainKid James with Captain
Organizer
Nicola Flint
Organizer