Tag Archives: tumour

Like Tessa Jowell, I have a brain tumour. I hope her death inspires new research | Jessica Morris

Many people are grieving the untimely death of Tessa Jowell. She was an exceptional person. Tony Blair confirmed the impression she gave to those of us who only knew her from afar: “Tessa had passion, determination and simple human decency in greater measure than any person I have ever known.”

For me, her death is personal for another reason. We found ourselves in the same elite club.

Like Tessa Jowell, I was blindsided by a diagnosis of glioblastoma (GBM) in January 2016. I was walking in the hills in upstate New York (we live in the city) when a strange sensation made me stop. I opened my mouth to explain to my friends and found I couldn’t form any words. I slumped into unconsciousness, having a full-blown seizure.

Two days later I had brain surgery, and the terrible diagnosis came two weeks after that. Now, more than two years later, I am determined to do what I can to improve the outcomes for everyone like me living with this brutal disease. Jowell’s death gives me added impetus in the struggle to turn this monstrous disease around.

After I was diagnosed, I asked my neuro-oncologist why glioblastoma is so deadly; why the terrifying statistics suggested that I had a mere 5% chance of surviving five years. He explained to me that the dreaded figure five also relates to another key statistic: the percentage of successful applications for research funding into GBM. This disease is so complex, so aggressive and so rare, that it is hard to attract substantial research funding.

It is especially gratifying that Jowell’s powerful legacy has already begun to be felt in the form of increased government funding. But she would be the first to agree this is not enough. There is another currency to tap: a goldmine of patient-generated data that is massively under-collected and undervalued. At the heart of every GBM drama, as with any life-threatening disease, is a human being enduring symptoms – some good, many bad – resulting from the cancer and the treatments we take. Yet our relationship as patients with our disease is not consistently recorded or analysed. It can feel as if, from the perspective of the medical system, our experience is not worth understanding.

Tessa Jowell dies aged 70 – video obituary

As an example, I’ve been fortunate enough to be treated in New York with ground-breaking treatments that can be hard to come by in the UK, including electrotherapy and immunotherapy. These cost more than $ 30,000 a month, covered by insurance and the drug company’s compassionate use programme. But how the interaction between these therapies is actually affecting me is not recorded. This reflects a long-standing approach in medicine. The “objective” measures of disease progression, as evidenced by things like the size of my tumour, the results of my MRIs, are prized. The “subjective” measures of my experience – how I feel each day, my personal responses in terms of X or Y – are largely ignored.

Patients are active, wanting to share and swap notes. Desperate to know whether a change in diet, or a cocktail of supplements, or exercise, or mindset, can help them stay alive, they are busy on social media. Amid all this noise, doctors have little advice to give – “Should I adopt the ketogenic diet? Take medical marijuana? Fast twice a week?” – because none of these approaches have been, or could be, subject to the kind of clinical trial a new drug treatment undergoes.

But imagine if we could ask people to log how they’re feeling, and what steps they’re taking to manage their disease, every day. Imagine if we could then aggregate all that data and mine it for insights. Couldn’t we find some clues from patients’ unfiltered perspective that would supplement the clinical trials information?

Dr Ethan Basch, of the Lineberger Comprehensive Cancer Center, University of North Carolina, undertook some fascinating research last year. He found that if you ask someone with cancer to log their symptoms, the act of doing so, coupled with your clinician’s ability to adjust therapies in real time, can lead to an actual improvement in disease outcome. People lived longer.

I’ve channelled my own frustration with my diagnosis into creating OurBrainBank, a non-profit organisation designed to move glioblastoma from terminal to treatable, powered by patients. We recently launched our pilot app in the US. People with GBM can log their symptoms daily and their aggregated data will be available to any qualified GBM researcher worldwide, for free, subject to strict screening. People using the app report feeling more on top of their disease through daily monitoring; better able to make use of their meetings with their clinicians; and more hopeful that by sharing their personal data they can play an active role in making progress.

Tessa Jowell died during May, which happens to be brain tumour awareness month. Our colour is grey. It’s strangely apt. Because what we need to crack GBM is to use our grey cells to think creatively and empathetically – patient and doctor alike.

That’s the kind of approach she espoused. She put it the best: “I hope always my politics are the politics of aspiration, ambition, possibility and the future.”

Jessica Morris is a strategic communications consultant and the founder and chair of OurBrainBank

Like Tessa Jowell, I have a brain tumour. I hope her death inspires new research | Jessica Morris

Many people are grieving the untimely death of Tessa Jowell. She was an exceptional person. Tony Blair confirmed the impression she gave to those of us who only knew her from afar: “Tessa had passion, determination and simple human decency in greater measure than any person I have ever known.”

For me, her death is personal for another reason. We found ourselves in the same elite club.

Like Tessa Jowell, I was blindsided by a diagnosis of glioblastoma (GBM) in January 2016. I was walking in the hills in upstate New York (we live in the city) when a strange sensation made me stop. I opened my mouth to explain to my friends and found I couldn’t form any words. I slumped into unconsciousness, having a full-blown seizure.

Two days later I had brain surgery, and the terrible diagnosis came two weeks after that. Now, more than two years later, I am determined to do what I can to improve the outcomes for everyone like me living with this brutal disease. Jowell’s death gives me added impetus in the struggle to turn this monstrous disease around.

After I was diagnosed, I asked my neuro-oncologist why glioblastoma is so deadly; why the terrifying statistics suggested that I had a mere 5% chance of surviving five years. He explained to me that the dreaded figure five also relates to another key statistic: the percentage of successful applications for research funding into GBM. This disease is so complex, so aggressive and so rare, that it is hard to attract substantial research funding.

It is especially gratifying that Jowell’s powerful legacy has already begun to be felt in the form of increased government funding. But she would be the first to agree this is not enough. There is another currency to tap: a goldmine of patient-generated data that is massively under-collected and undervalued. At the heart of every GBM drama, as with any life-threatening disease, is a human being enduring symptoms – some good, many bad – resulting from the cancer and the treatments we take. Yet our relationship as patients with our disease is not consistently recorded or analysed. It can feel as if, from the perspective of the medical system, our experience is not worth understanding.

Tessa Jowell dies aged 70 – video obituary

As an example, I’ve been fortunate enough to be treated in New York with ground-breaking treatments that can be hard to come by in the UK, including electrotherapy and immunotherapy. These cost more than $ 30,000 a month, covered by insurance and the drug company’s compassionate use programme. But how the interaction between these therapies is actually affecting me is not recorded. This reflects a long-standing approach in medicine. The “objective” measures of disease progression, as evidenced by things like the size of my tumour, the results of my MRIs, are prized. The “subjective” measures of my experience – how I feel each day, my personal responses in terms of X or Y – are largely ignored.

Patients are active, wanting to share and swap notes. Desperate to know whether a change in diet, or a cocktail of supplements, or exercise, or mindset, can help them stay alive, they are busy on social media. Amid all this noise, doctors have little advice to give – “Should I adopt the ketogenic diet? Take medical marijuana? Fast twice a week?” – because none of these approaches have been, or could be, subject to the kind of clinical trial a new drug treatment undergoes.

But imagine if we could ask people to log how they’re feeling, and what steps they’re taking to manage their disease, every day. Imagine if we could then aggregate all that data and mine it for insights. Couldn’t we find some clues from patients’ unfiltered perspective that would supplement the clinical trials information?

Dr Ethan Basch, of the Lineberger Comprehensive Cancer Center, University of North Carolina, undertook some fascinating research last year. He found that if you ask someone with cancer to log their symptoms, the act of doing so, coupled with your clinician’s ability to adjust therapies in real time, can lead to an actual improvement in disease outcome. People lived longer.

I’ve channelled my own frustration with my diagnosis into creating OurBrainBank, a non-profit organisation designed to move glioblastoma from terminal to treatable, powered by patients. We recently launched our pilot app in the US. People with GBM can log their symptoms daily and their aggregated data will be available to any qualified GBM researcher worldwide, for free, subject to strict screening. People using the app report feeling more on top of their disease through daily monitoring; better able to make use of their meetings with their clinicians; and more hopeful that by sharing their personal data they can play an active role in making progress.

Tessa Jowell died during May, which happens to be brain tumour awareness month. Our colour is grey. It’s strangely apt. Because what we need to crack GBM is to use our grey cells to think creatively and empathetically – patient and doctor alike.

That’s the kind of approach she espoused. She put it the best: “I hope always my politics are the politics of aspiration, ambition, possibility and the future.”

Jessica Morris is a strategic communications consultant and the founder and chair of OurBrainBank

Like Tessa Jowell, I have a brain tumour. I hope her death inspires new research | Jessica Morris

Many people are grieving the untimely death of Tessa Jowell. She was an exceptional person. Tony Blair confirmed the impression she gave to those of us who only knew her from afar: “Tessa had passion, determination and simple human decency in greater measure than any person I have ever known.”

For me, her death is personal for another reason. We found ourselves in the same elite club.

Like Tessa Jowell, I was blindsided by a diagnosis of glioblastoma (GBM) in January 2016. I was walking in the hills in upstate New York (we live in the city) when a strange sensation made me stop. I opened my mouth to explain to my friends and found I couldn’t form any words. I slumped into unconsciousness, having a full-blown seizure.

Two days later I had brain surgery, and the terrible diagnosis came two weeks after that. Now, more than two years later, I am determined to do what I can to improve the outcomes for everyone like me living with this brutal disease. Jowell’s death gives me added impetus in the struggle to turn this monstrous disease around.

After I was diagnosed, I asked my neuro-oncologist why glioblastoma is so deadly; why the terrifying statistics suggested that I had a mere 5% chance of surviving five years. He explained to me that the dreaded figure five also relates to another key statistic: the percentage of successful applications for research funding into GBM. This disease is so complex, so aggressive and so rare, that it is hard to attract substantial research funding.

It is especially gratifying that Jowell’s powerful legacy has already begun to be felt in the form of increased government funding. But she would be the first to agree this is not enough. There is another currency to tap: a goldmine of patient-generated data that is massively under-collected and undervalued. At the heart of every GBM drama, as with any life-threatening disease, is a human being enduring symptoms – some good, many bad – resulting from the cancer and the treatments we take. Yet our relationship as patients with our disease is not consistently recorded or analysed. It can feel as if, from the perspective of the medical system, our experience is not worth understanding.

Tessa Jowell dies aged 70 – video obituary

As an example, I’ve been fortunate enough to be treated in New York with ground-breaking treatments that can be hard to come by in the UK, including electrotherapy and immunotherapy. These cost more than $ 30,000 a month, covered by insurance and the drug company’s compassionate use programme. But how the interaction between these therapies is actually affecting me is not recorded. This reflects a long-standing approach in medicine. The “objective” measures of disease progression, as evidenced by things like the size of my tumour, the results of my MRIs, are prized. The “subjective” measures of my experience – how I feel each day, my personal responses in terms of X or Y – are largely ignored.

Patients are active, wanting to share and swap notes. Desperate to know whether a change in diet, or a cocktail of supplements, or exercise, or mindset, can help them stay alive, they are busy on social media. Amid all this noise, doctors have little advice to give – “Should I adopt the ketogenic diet? Take medical marijuana? Fast twice a week?” – because none of these approaches have been, or could be, subject to the kind of clinical trial a new drug treatment undergoes.

But imagine if we could ask people to log how they’re feeling, and what steps they’re taking to manage their disease, every day. Imagine if we could then aggregate all that data and mine it for insights. Couldn’t we find some clues from patients’ unfiltered perspective that would supplement the clinical trials information?

Dr Ethan Basch, of the Lineberger Comprehensive Cancer Center, University of North Carolina, undertook some fascinating research last year. He found that if you ask someone with cancer to log their symptoms, the act of doing so, coupled with your clinician’s ability to adjust therapies in real time, can lead to an actual improvement in disease outcome. People lived longer.

I’ve channelled my own frustration with my diagnosis into creating OurBrainBank, a non-profit organisation designed to move glioblastoma from terminal to treatable, powered by patients. We recently launched our pilot app in the US. People with GBM can log their symptoms daily and their aggregated data will be available to any qualified GBM researcher worldwide, for free, subject to strict screening. People using the app report feeling more on top of their disease through daily monitoring; better able to make use of their meetings with their clinicians; and more hopeful that by sharing their personal data they can play an active role in making progress.

Tessa Jowell died during May, which happens to be brain tumour awareness month. Our colour is grey. It’s strangely apt. Because what we need to crack GBM is to use our grey cells to think creatively and empathetically – patient and doctor alike.

That’s the kind of approach she espoused. She put it the best: “I hope always my politics are the politics of aspiration, ambition, possibility and the future.”

Jessica Morris is a strategic communications consultant and the founder and chair of OurBrainBank

Like Tessa Jowell, I have a brain tumour. I hope her death inspires new research | Jessica Morris

Many people are grieving the untimely death of Tessa Jowell. She was an exceptional person. Tony Blair confirmed the impression she gave to those of us who only knew her from afar: “Tessa had passion, determination and simple human decency in greater measure than any person I have ever known.”

For me, her death is personal for another reason. We found ourselves in the same elite club.

Like Tessa Jowell, I was blindsided by a diagnosis of glioblastoma (GBM) in January 2016. I was walking in the hills in upstate New York (we live in the city) when a strange sensation made me stop. I opened my mouth to explain to my friends and found I couldn’t form any words. I slumped into unconsciousness, having a full-blown seizure.

Two days later I had brain surgery, and the terrible diagnosis came two weeks after that. Now, more than two years later, I am determined to do what I can to improve the outcomes for everyone like me living with this brutal disease. Jowell’s death gives me added impetus in the struggle to turn this monstrous disease around.

After I was diagnosed, I asked my neuro-oncologist why glioblastoma is so deadly; why the terrifying statistics suggested that I had a mere 5% chance of surviving five years. He explained to me that the dreaded figure five also relates to another key statistic: the percentage of successful applications for research funding into GBM. This disease is so complex, so aggressive and so rare, that it is hard to attract substantial research funding.

It is especially gratifying that Jowell’s powerful legacy has already begun to be felt in the form of increased government funding. But she would be the first to agree this is not enough. There is another currency to tap: a goldmine of patient-generated data that is massively under-collected and undervalued. At the heart of every GBM drama, as with any life-threatening disease, is a human being enduring symptoms – some good, many bad – resulting from the cancer and the treatments we take. Yet our relationship as patients with our disease is not consistently recorded or analysed. It can feel as if, from the perspective of the medical system, our experience is not worth understanding.

Tessa Jowell dies aged 70 – video obituary

As an example, I’ve been fortunate enough to be treated in New York with ground-breaking treatments that can be hard to come by in the UK, including electrotherapy and immunotherapy. These cost more than $ 30,000 a month, covered by insurance and the drug company’s compassionate use programme. But how the interaction between these therapies is actually affecting me is not recorded. This reflects a long-standing approach in medicine. The “objective” measures of disease progression, as evidenced by things like the size of my tumour, the results of my MRIs, are prized. The “subjective” measures of my experience – how I feel each day, my personal responses in terms of X or Y – are largely ignored.

Patients are active, wanting to share and swap notes. Desperate to know whether a change in diet, or a cocktail of supplements, or exercise, or mindset, can help them stay alive, they are busy on social media. Amid all this noise, doctors have little advice to give – “Should I adopt the ketogenic diet? Take medical marijuana? Fast twice a week?” – because none of these approaches have been, or could be, subject to the kind of clinical trial a new drug treatment undergoes.

But imagine if we could ask people to log how they’re feeling, and what steps they’re taking to manage their disease, every day. Imagine if we could then aggregate all that data and mine it for insights. Couldn’t we find some clues from patients’ unfiltered perspective that would supplement the clinical trials information?

Dr Ethan Basch, of the Lineberger Comprehensive Cancer Center, University of North Carolina, undertook some fascinating research last year. He found that if you ask someone with cancer to log their symptoms, the act of doing so, coupled with your clinician’s ability to adjust therapies in real time, can lead to an actual improvement in disease outcome. People lived longer.

I’ve channelled my own frustration with my diagnosis into creating OurBrainBank, a non-profit organisation designed to move glioblastoma from terminal to treatable, powered by patients. We recently launched our pilot app in the US. People with GBM can log their symptoms daily and their aggregated data will be available to any qualified GBM researcher worldwide, for free, subject to strict screening. People using the app report feeling more on top of their disease through daily monitoring; better able to make use of their meetings with their clinicians; and more hopeful that by sharing their personal data they can play an active role in making progress.

Tessa Jowell died during May, which happens to be brain tumour awareness month. Our colour is grey. It’s strangely apt. Because what we need to crack GBM is to use our grey cells to think creatively and empathetically – patient and doctor alike.

That’s the kind of approach she espoused. She put it the best: “I hope always my politics are the politics of aspiration, ambition, possibility and the future.”

Jessica Morris is a strategic communications consultant and the founder and chair of OurBrainBank

Italian court rules mobile phone use caused brain tumour

An Italian court has ruled that excessive, work-related use of a mobile phone caused an executive to develop a benign brain tumour.

In what could become a landmark ruling, the court in the northern town of Ivrea awarded the plaintiff a state-funded pension.

The judgment, which was handed own on 11 April but only made public on Thursday, is subject to a possible appeal.

Roberto Romeo, 57, had testified that his work duties obliged him to use his mobile for three to four hours of each working day for 15 years.

“For the first time in the world, a court has recognised a causal link between inappropriate use of a mobile phone and a brain tumour,” his lawyers, Stefano Bertone and Renato Ambrosio said in a statement.

Romeo said he did not want to demonise mobiles, “but I believe we have to be more aware about how to use them.

“I had no choice but to use my mobile to talk to colleagues and organise work – for 15 years I was calling all the time, from home, in the car.

“I started to have the feeling of my right ear being blocked all the time and the tumour was diagnosed in 2010. Happily, it was benign but I can no longer hear anything because they had to remove my acoustic nerve.”

A medical expert estimated the damage to Romeo at 23% of his bodily function, prompting the judge to make a compensation award of €500 per month to be paid by INAIL, a national insurance scheme covering workplace accidents.

Scientific studies of the potential health risks of mobile phones have mostly concluded that they pose no serious risk to human health at the level of most people’s use.

Heavier use may pose some risk, other studies have found, and many experts say it is too early to do a proper assessment of what is a relatively new technology.

My story: I discovered out I had a cancerous tumour while providing birth to my daughter

Cathryn had to start her treatment method instantly. She had provided birth to her 2nd daughter in March 2011, but after the cancer was found in Could, she had chemotherapy, radiotherapy and brachytherapy from June by way of to August.

“I received via it by getting a dark sense of humour,” she says. “I was possessing an MRI scan for an hour and a half, and they played Adele’s A person Like You on repeat. I just laughed about it, but I totally dislike that song now.”

Her daughter Robyn, only a couple of months previous, would wait outside with Cathryn’s spouse George. Fortunately George could consider time off from his perform as a learning disabilities nurse, and their eldest daughter Milli, 6-many years-previous, stayed with her grandparents. But issues had been nevertheless difficult.

“George would do all the night feeds for Robyn,” says Cathryn. “I physically couldn’t do it. It was also exhausting. For the 1st couple of months of Robyn’s existence, I wasn’t really there. I hardly held her. At the time the target was just, get better or I will not have the rest of her lifestyle. You are prepared to sacrifice the initial handful of weeks.”

It created it challenging for Cathryn to at first bond with her daughter, but three years later on, they now have a loving relationship. “It’s much more particular, due to the fact if it wasn’t for her, I wouldn’t be right here. I had literally no signs and symptoms, I had no thought I had cancer until finally I gave birth to Robyn,” says Cathryn, now 34.

She obtained an invitation for a smear check back in 2005 soon after she gave birth to her eldest daughter, but by no means went. “I bear in mind acquiring a letter and thinking, I’ll get round to it 1 day, and then never receiving round to it,” she says. “With hindsight, if I’d gone, it may have all happened differently.”

Instead, she discovered out several many years later on when her daughter Milli, now eight many years outdated, was only six. “She knew mummy was sick, but not what it was or why I couldn’t play or get out her,” says Cathryn, who would be concerned about how the cancer was affecting Milli. “Now as she’s obtaining older, she hears the word cancer and know it is serious. She’s truly concerned about it coming back.”

Cathryn’s therapy ended in August 2011 but she wasn’t told she was clear till January 2012. Nevertheless, she nevertheless started a nursing program in September 2011 at Canterbury Christ Church University. She says: “I commenced the course not knowing if I’d finish it. I bear in mind contemplating if the treatment’s not effective at least I’ll have been a nurse for a handful of weeks on my placements.

“It’s all I ever wanted to do, I had waited years to be ready to afford it. The bloody cancer’s taken ample from me. I wasn’t going to let it get my dream of getting a nurse from me as effectively.”

Now, she is in her ultimate year of studying and will be a certified nurse in June. She is two many years clear from cancer, but is waiting until 5 many years have passed and she will be officially free of charge of the condition. “I’ve learnt that each day counts really,” she says. “But when I get to the 5 12 months mark, that’s when I’ll begin arranging for my future.”

Jo’s Cervical Cancer Believe in is working Cervical Cancer Prevention Week from 19 to 25 January to increase awareness of the condition and the significance of screenings. To get in touch with them, go to their site or get in touch with their helpline (0808 802 8000).