Donation protected
Our partner, friend, daughter and sister Philippa has been dealing with aggressive breast cancer for more than two years. Aged only 37, she recently found out her cancer is incurable and has spread to her brain. The prognosis for her type of incurable breast cancer is just two years. She needs money to access life-extending treatment not available on the public health system (NHS) in the UK.
Breast cancer entered Philippa’s life right when everything was going great (isn’t it always the way?). She had finished a PhD in History at Harvard University in 2014 and got her dream job as a university lecturer at University College London. She moved to her favourite city in the world and set up there with her partner Alessandro, working on writing a Russian history book and teaching the capital’s undergraduates. Then, on 16 February 2019, she found a lump in her left breast, and everything fell apart. She was diagnosed with Stage 2 breast cancer, just six months after her beloved father died in Australia of melanoma.
This came as a huge shock to all of us, due to her young age and the fact that she has no family history of breast cancer. Philippa took sick leave from her job and put her life on pause. She started five months of punishing chemotherapy during which she lost her hair, eyebrows and eyelashes and was largely bed-bound. She had a radical mastectomy and was told she needed to wait at least a year before reconstruction because her cancer was so aggressive. She then had a month of daily radiation treatments and was put on ten years of hormone therapy to stop the cancer returning. In November 2019 she was told she was cancer free.
Despite this life-altering treatment, on a terrible day in November 2020 she found out that the cancer had returned and was now Stage 4 (incurable). In a one-two punch, it had set up shop in her lungs and - the most difficult news - it had mutated to a trickier type of breast cancer called Triple Negative Breast Cancer. This rare form of breast cancer doesn’t respond to hormone treatments, is even more aggressive than her earlier cancer and more likely to spread to vital organs like the brain. It has the shortest life expectancy of any form of breast cancer.
We recently found out the breast cancer has spread to her brain, with many tiny lesions in the occipital lobe. This will needs specialised radiotherapy for a chance of being treated, which is not available on the NHS.
Traditionally, there have been very few treatments for Triple Negative Breast Cancer. Treatment usually involves indefinite chemotherapy. As well as being brutal, this stops working quickly - each form of chemotherapy only works for a maximum of six months.
Luckily, the last few years have seen a renaissance in drug development for Triple Negative Breast Cancer. First, scientists have discovered that immunotherapy can work with Triple Negative. The second, big news, is the US FDA approval of the drug Trodelvy (drug name Sacituzumab Govitecan). This is the first targeted therapy for Triple Negative Breast Cancer and the clinical trials have shown great results. You can watch a video about Trodelvy here.
Unfortunately, Trodelvy is not yet available on the NHS in the UK, and neither are most immunotherapies. They’re only available if you pay privately or in clinical trials. Often these clinical trials require that you have certain ‘mutations’ in your cancer, and the only way to find out if you have mutations is by paying for expensive genetic testing. Some patients can access targeted radiotherapy on the NHS, but Philippa has been told she has too many tumours for this. She may be able to access targeted radiotherapy privately but it will be expensive.
The most important thing for a cancer patient is to have options. For Philippa, the options to access Trodelvy, immunotherapy and targeted radiation at the time she needs them are crucial, and could extend her life by a number of years (years when we hope the scientists will discover a cure). We’re hoping she won’t need to take up these options while the ‘standard of care’ chemotherapy she’s on now is working. But we’re realistic that she’ll need them sooner than the NHS is able to give them to her.
Which is where our fundraiser comes in! People with cancer take a serious financial hit and Philippa and Alessandro have already run down savings paying for out-of-pocket expenses related to treatment. Financially, they can’t do this alone. To help them, we’re fundraising to cover the following:
1. Genetic tests to identify mutations for clinical trials: Cancer mutates all the time and this determines the treatments you can access. The NHS doesn’t cover genetic tests to find out what these mutations are. Patients with the best outcomes have these tests about once a year to check for new mutations. For three years this is: £6000
2. Private targeted radiation: One option Philippa has is to pay for targeted radiation on the tumours in her brain. Quotes for this are roughly: £20,000
3. Private access to drugs licensed in the UK but not available on the NHS: Two immunotherapy drugs are currently only available privately. These are called Avastin and Pembrolizumab. Philippa is speaking to oncologists about accessing them now. The cost is £1800 per three-week cycle, which for one year is: £30,600
4. Expenses related to accessing treatment in the US, including Trodelvy and/or a clinical trial: From September 2021-2023 Philippa has a window to spend time in the US as she’s eligible for a visa and (limited) health insurance through Alessandro’s work. The US has more cutting-edge treatments for Triple Negative Breast Cancer than anywhere else in the world. Just last week Philippa spoke to a specialist from the National Institute of Health in Maryland about a cancer vaccine trial where they modify your immune cells and inject them back into you - exciting stuff. We all know how expensive medical bills are in the US, especially if you’re a foreigner with cancer. Based on a conservative estimate, £16,000 should cover out-of-pocket expenses for Trodelvy and/or (depending on whether it works) an exciting clinical trial. Estimate: £16,000
Total fundraising target: £72,600
All money raised will be spent on medical treatments - none on treats! All will go directly to accessing science-based, rigorously-tested medicines. None will go to dodgy alternative therapies or insanely overpriced cancer ‘spas’ in the Alps or Mexico.
If not all the money is needed, any left over-funds will be donated directly to Triple Negative Breast Cancer research. Specifically, we plan to send unused money to fund research here.
In addition to one-off donations, we will be organising fundraising events throughout the year, mostly online, that people can buy tickets for and participate in. Watch this space!
Please note: if you’re in the UK a Gofundme donation is eligible for GiftAid - please tick the GiftAid box as it’s a big help. If you’re in the US or Australia a Gofundme donation is tax deductible so keep your receipt.
Thank you everyone for all your help!
XXXXXXXXX
Breast cancer entered Philippa’s life right when everything was going great (isn’t it always the way?). She had finished a PhD in History at Harvard University in 2014 and got her dream job as a university lecturer at University College London. She moved to her favourite city in the world and set up there with her partner Alessandro, working on writing a Russian history book and teaching the capital’s undergraduates. Then, on 16 February 2019, she found a lump in her left breast, and everything fell apart. She was diagnosed with Stage 2 breast cancer, just six months after her beloved father died in Australia of melanoma.
This came as a huge shock to all of us, due to her young age and the fact that she has no family history of breast cancer. Philippa took sick leave from her job and put her life on pause. She started five months of punishing chemotherapy during which she lost her hair, eyebrows and eyelashes and was largely bed-bound. She had a radical mastectomy and was told she needed to wait at least a year before reconstruction because her cancer was so aggressive. She then had a month of daily radiation treatments and was put on ten years of hormone therapy to stop the cancer returning. In November 2019 she was told she was cancer free.
Despite this life-altering treatment, on a terrible day in November 2020 she found out that the cancer had returned and was now Stage 4 (incurable). In a one-two punch, it had set up shop in her lungs and - the most difficult news - it had mutated to a trickier type of breast cancer called Triple Negative Breast Cancer. This rare form of breast cancer doesn’t respond to hormone treatments, is even more aggressive than her earlier cancer and more likely to spread to vital organs like the brain. It has the shortest life expectancy of any form of breast cancer.
We recently found out the breast cancer has spread to her brain, with many tiny lesions in the occipital lobe. This will needs specialised radiotherapy for a chance of being treated, which is not available on the NHS.
Traditionally, there have been very few treatments for Triple Negative Breast Cancer. Treatment usually involves indefinite chemotherapy. As well as being brutal, this stops working quickly - each form of chemotherapy only works for a maximum of six months.
Luckily, the last few years have seen a renaissance in drug development for Triple Negative Breast Cancer. First, scientists have discovered that immunotherapy can work with Triple Negative. The second, big news, is the US FDA approval of the drug Trodelvy (drug name Sacituzumab Govitecan). This is the first targeted therapy for Triple Negative Breast Cancer and the clinical trials have shown great results. You can watch a video about Trodelvy here.
Unfortunately, Trodelvy is not yet available on the NHS in the UK, and neither are most immunotherapies. They’re only available if you pay privately or in clinical trials. Often these clinical trials require that you have certain ‘mutations’ in your cancer, and the only way to find out if you have mutations is by paying for expensive genetic testing. Some patients can access targeted radiotherapy on the NHS, but Philippa has been told she has too many tumours for this. She may be able to access targeted radiotherapy privately but it will be expensive.
The most important thing for a cancer patient is to have options. For Philippa, the options to access Trodelvy, immunotherapy and targeted radiation at the time she needs them are crucial, and could extend her life by a number of years (years when we hope the scientists will discover a cure). We’re hoping she won’t need to take up these options while the ‘standard of care’ chemotherapy she’s on now is working. But we’re realistic that she’ll need them sooner than the NHS is able to give them to her.
Which is where our fundraiser comes in! People with cancer take a serious financial hit and Philippa and Alessandro have already run down savings paying for out-of-pocket expenses related to treatment. Financially, they can’t do this alone. To help them, we’re fundraising to cover the following:
1. Genetic tests to identify mutations for clinical trials: Cancer mutates all the time and this determines the treatments you can access. The NHS doesn’t cover genetic tests to find out what these mutations are. Patients with the best outcomes have these tests about once a year to check for new mutations. For three years this is: £6000
2. Private targeted radiation: One option Philippa has is to pay for targeted radiation on the tumours in her brain. Quotes for this are roughly: £20,000
3. Private access to drugs licensed in the UK but not available on the NHS: Two immunotherapy drugs are currently only available privately. These are called Avastin and Pembrolizumab. Philippa is speaking to oncologists about accessing them now. The cost is £1800 per three-week cycle, which for one year is: £30,600
4. Expenses related to accessing treatment in the US, including Trodelvy and/or a clinical trial: From September 2021-2023 Philippa has a window to spend time in the US as she’s eligible for a visa and (limited) health insurance through Alessandro’s work. The US has more cutting-edge treatments for Triple Negative Breast Cancer than anywhere else in the world. Just last week Philippa spoke to a specialist from the National Institute of Health in Maryland about a cancer vaccine trial where they modify your immune cells and inject them back into you - exciting stuff. We all know how expensive medical bills are in the US, especially if you’re a foreigner with cancer. Based on a conservative estimate, £16,000 should cover out-of-pocket expenses for Trodelvy and/or (depending on whether it works) an exciting clinical trial. Estimate: £16,000
Total fundraising target: £72,600
All money raised will be spent on medical treatments - none on treats! All will go directly to accessing science-based, rigorously-tested medicines. None will go to dodgy alternative therapies or insanely overpriced cancer ‘spas’ in the Alps or Mexico.
If not all the money is needed, any left over-funds will be donated directly to Triple Negative Breast Cancer research. Specifically, we plan to send unused money to fund research here.
In addition to one-off donations, we will be organising fundraising events throughout the year, mostly online, that people can buy tickets for and participate in. Watch this space!
Please note: if you’re in the UK a Gofundme donation is eligible for GiftAid - please tick the GiftAid box as it’s a big help. If you’re in the US or Australia a Gofundme donation is tax deductible so keep your receipt.
Thank you everyone for all your help!
XXXXXXXXX
Co-organizers (6)
Team Philippa
Organizer
England
Alessandro Iandolo
Co-organizer
Louise Kettle
Co-organizer
Robyn Hetherington
Co-organizer
Sarah Shortall
Co-organizer