Help Zoe fund vital brain cancer treatment
Without any warning, Zoe Wilson’s life was upended one day this spring. A massive seizure in the shower led to an abrupt, devastating diagnosis of an aggressive, malignant brain tumour. Doctors told her that without treatment she might only live for three more months, and with surgery, chemotherapy and radiotherapy, average life expectancy was 15 months.
Zoe, 35, who is an English teacher and a mother to two young boys, has now endured two lengthy operations to remove the bulk of the tumour. She's also had radiotherapy, and is currently undergoing cycles of chemo in an effort to eradicate as much of the remaining tumour. But this type of cancer is very hard to treat, and the tumour cells will ultimately mutate to evade the chemo.
The most promising treatment for Zoe’s cancer is immunotherapy: it is regularly used in Germany because it has been shown to extend sufferers’ lives. But it’s not available on the NHS - which is why we are crowdfunding now. All Zoe wants is to spend as much time as possible with her young family. Any help - by either contributing to the fund, or sharing our page - would be so gratefully appreciated. Thank you for your help.
-------
On the 18th March 2021, without warning, Zoe Wilson, a 35 year old secondary school teacher from Cheltenham, my wife and mother to our two children, collapsed at home. Only three days earlier she had been walking up Cleeve hill with her friend Sarah and our son on her back.
Zoe had just jumped into the shower, locked the door and left Mark (19 months) crawling on the bathroom floor, just as she always does before she goes to work. Our eldest, John (5), was downstairs watching cartoons and I heard an almighty crash, shot out of bed and broke into the bathroom to find her slumped over the bath, shaking all over, and having what turned out to be a massive seizure. If it had happened an hour later she could have been in the car driving Mark to nursery; we are so thankful that it didn't and they were safe.
Zoe was whisked off to Gloucester Royal Hospital by the paramedics, where she had two further seizures, including one in the CT scanner. When I arrived she was heavily sedated and scared. The next day we were given the life changing news that she had an aggressive and cancerous brain tumour: a Grade 4 Glioblastoma. Average life expectancy for this type of tumour, with the standard treatment, is 15 months. If we did nothing her surgeon predicted she had around 3 months of life left.
She returned home for a couple of weeks while she awaited surgery to remove two of the solid bits of tumour: one in the front left and one in the front right.
Unfortunately while she waited for the operations, just before Easter, she suffered a bleed and clot on the brain and was immediately admitted to Southmead hospital where she was stabilised by the wonderful team there.
The two operations went ahead, 5 days apart, with one lasting over 10 hours. The operations were both successful and we are grateful to the talented team at Southmead. However she missed her young family and having to give up breastfeeding so suddenly was a particular wrench for her.
Zoe approached her recovery like a trouper even though at points she was in incredible pain and could not remember the names of her children.
Problems with the left side of the brain affect spoken and written language and can cause word-finding issues (knowing what she wants to say, but not selecting the correct word) as well as a sense of disorientation. These were and continue to be particularly frustrating for Zoe, especially as an English teacher. While in hospital she never lost sight of her goal, to get home to be with her family. So she did everything that was asked of her by the wonderful doctors and nurses in hospital.
Finally, the day came for her to come home. Due to Covid I was the only person allowed to visit her in hospital, for one hour per day. She hadn't seen her children for over 3 weeks, and when she did, she was overjoyed (even if the embrace was a bit squishy for John!) She continues to work hard with her speech therapist in the hope of getting back to some form of work, which she really misses.
Zoe's tumour is diffuse which means that it has tentacles that spread throughout the healthy cells of her brain. This means it is impossible to remove by surgery alone so after the operations she was given six weeks of radiotherapy and chemotherapy. Zoe approached the treatment with a sense of calm and strength even when she felt tired or her hair started to fall out. Some days she walked to and from the hospital (having be told she could no longer drive) and tried to go swimming at the lido regularly to help combat her fatigue. Her attitude in the face of adversity is a wonder to behold. After six busy weeks, as is the custom when you finish a block of treatment, she got to ring the bell! I was so proud of her that day, after everything she had been through.
The NHS heroes who have treated Zoe to date have been wonderful, exceptional human beings. They have treated her with compassion and dignity, yet, they have been very clear with us: they can't cure this cancer. Zoe will be given another 6 to 12 months of chemotherapy to keep the tumour at bay, but eventually it will stop working. Brain cancer is very hard to treat because it is hard to get drugs into the brain due to something called the blood-brain-barrier. Radiotherapy works, but it causes collateral damage and you can only treat the same part of the body once, or you risk serious harm. Chemotherapy also works, but after a time the tumour will mutate and stop responding to the treatment. This type of tumour is notorious for mutating and eventually becoming resistant to the treatments given as standard on the NHS.
As we have always known we will run out of road with the standard treatment, we have been researching other options to help extend Zoe's life. Whilst other treatments are promising, these are not yet available on the NHS.
The most promising treatment we have found involves creating a custom vaccine to teach Zoe's immune system to attack the tumour. Cancers are very clever at avoiding the immune system: this is why tumours can grow unchecked in the body. However with a bit of encouragement Zoe's immune system could be trained to target the cancerous cells. Similar to a Covid vaccine you may have had, this treatment helps the immune system to learn what it needs to do. This could become the way Cancer is routinely treated in the future. The immune system is already used to target other types of cancer in the NHS, (immunotherapy) but the NHS do not yet use this technology for Zoe's type of brain tumour.
In May this year Prof Garth Cruickshank, Professor of Neurosurgery, University of Birmingham, spoke to the parliamentary committee and said, "there is increasing scientific evidence that the use of personalised vaccines to a patient’s tumour may offer a safe and potentially useful adjunct to current mainline NICE approved therapy."
There is such increasing support for this type of therapy in Europe that Germany have formed a nationwide program to deliver immunotherapy to all German sufferers, and the therapy is led by some of the most distinguished researchers in brain tumours in Europe.
Our hope is that these vaccines could train Zoe’s immune system to attack the tumour and keep it at bay, as it mutates and succeeds where the drugs will eventually fail. There are different types of vaccine technologies: dendritic cell vaccines, peptide vaccines and herpes virus vaccines. One of these custom vaccine technologies has already passed phase one and two clinical trials. The phase three trail is complete, pending publication of the results. There of course no guarantees that this will work, but one of the members of the Phase 1 trial in the US has survived 15 years and still has regular maintenance vaccines: https://eu.northjersey.com/story/news/health/2017/07/20/surviving-glioblastoma/495768001/
The manufacturing process is very complicated, expensive and is only available privately in the UK. The cost, over £157,000 in the first year. £150k to have the vaccine manufactured in Cambridgeshire, £1200 per injection to have the first 6 jabs administered in London plus additional costs to have tissue transported and blood harvested.
Peptide vaccines can be created in Germany because they are cheaper, but require the patient to travel to Germany for 2 weeks, then go back for a booster injection every 4 to 6 weeks. A challenge during a global pandemic and with a young family, but something Zoe is prepared to do if it will help. The cost for the first year is approximately €80,000 + travel, accommodation and covid tests! It would easier to have the injections in the UK, but in accordance with German Drug Law the clinic are not allowed to hand over or ship the vaccines to any other place or medical doctor. We understand that a London hospital is looking to do a clinic trial in the UK with the clinic, but currently government red tape is getting in the way of them starting. As Prof Garth Cruickshank told parliament, "the vaccines produced could be administered in the UK" but "vaccine production is not manufactured under GMP guidelines but only to a GLP standard. This prevents its use in the UK - despite the fact that any one vaccine is made and will only be used specifically in the one consenting patient is produced for, hence the risk is very low of problems". We have written to our MP and the Department of Health on this matter, but received a disappointingly generic response from Lord Bethell.
We know we have to be realistic, but these treatments give us hope. We think the science is there, but currently the only way to access these cutting edge treatments is privately. All we want is to give our children, John and Mark, the opportunity to spend as much time with their mother as possible.
Zoe is doing everything she can to prepare for some form of immunotherapy. She has adjusted her diet to eliminate sugar (not easy, given her sweet tooth) and is following "good gut" principles proven to boost the immune system.
Zoe is also taking some additional supplements, probiotics and medicines to complement her NHS care, but it all comes at at a cost to our family which is why we need your help.
While we will lobby and campaign tirelessly to allow people in the UK access to these treatments on the NHS, in Zoe's case we don't have time to wait for the wheels of bureaucracy to turn and for the UK to catch up with other countries which routinely offer these sort of treatments.
We are so grateful for any support given in any form. We know that the sums of money involved are vast and eye-watering, it doesn't come easily for us to ask for help and therefore we don't make this request lightly. All funds raised will be used for medical treatment and overseas travel if required. If at any point Zoe becomes too unwell for continued treatment then any leftover funds will be donated to Brain Tumour research.
Thank you for any support you can offer us, it is so appreciated.