Aman's fight against brain tumour Glioblastoma

Aman Singh Sumal, a 36 year old married father of a young baby boy from West London is suffering with a Grade 4 Glioblastoma (terminal brain cancer).  His family and friends are asking for your support for £150,000 so he can get lifesaving treatments.  These are private immunotherapy treatments that will cost anywhere up to £10,000 a month and, the development of a vaccine with CeGat in Germany which is formulated specifically for mutations in Aman’s tumour. This can cost upwards of £40,000 per vaccine. 


Never in a million years did we think we would be doing this. We are setting up this page because we need your help.

 

Aman is our handsome, intelligent, fun loving and caring brother who is now fighting for his life after a devastating Grade 4 Glioblastoma (terminal brain cancer) diagnosis.

 

Only a couple of weeks ago, Aman should have been celebrating his 7 year wedding anniversary with his wife (Jas) but unfortunately he was too unwell to do so. For years Aman and Jas had struggled to conceive and were finally blessed with the birth of their beautiful baby boy, Rajan. Aman is besotted by Rajan and tries to spend every waking minute of the day with him. He always wanted to be the one to change him, feed him and hold him. Unfortunately due to Aman’s symptoms, it has made it more difficult to be the hands on dad that he normally is.

 

 

Aman is one of four siblings and an identical twin. He and his twin (Anoop) have always shared an extra special bond that identical twins have, even speaking their own language when they were babies. Growing up they were the shining light of our family, some family members still can’t tell them apart. As siblings our hearts are broken for our brother, his beautiful young family and our devastated parents.

 

 

The NHS have been fantastic in offering what they can for Aman. Unfortunately, treatment options available through the NHS for this type of cancer are very limited and have been exhausted by Aman to no avail.

 

As a family we have been funding additional treatments but after recent deterioration in his condition and an emergency MRI, we have been given the heart-breaking news that time is no longer on our side. We are now reaching out in the hope that we can raise additional funds for potentially life-saving treatments to give Aman more time with his family and friends. These treatments are extremely costly and as a family we now require the additional help.

 

We are hoping to raise £150,000 for a private immunotherapy treatment that will cost anywhere up to £10,000 a month and, the development of a vaccine with CeGat in Germany which is formulated specifically for mutations in Aman’s tumour. This can cost upwards of £40,000 per vaccine.

 

 

 

 

Aman’s Story…

 

It all started in August 2020 when Aman collapsed at work, he was working as an engineer on a large construction project. He was about to drive himself home when a colleague stopped him as he didn’t seem fit to drive. Aman called our mum to ask if she could collect him as he wasn’t feeling right. On the journey home mum noticed that something was seriously wrong. They were only a few minutes away from home when Aman had a seizure in the car. Mum had to do an emergency stop in the middle of the street. She called out to strangers for help, who called an ambulance and ran down to Aman’s house to tell his wife. In sheer panic, she immediately ran down the street without even stopping to put her shoes on. The ambulance arrived and took Aman away, no one was able to accompany him due to Covid restrictions. Mum and his wife were left standing in the middle of the street not knowing the journey we were about to embark upon.

 

Aman continued to suffer from headaches after the initial seizure and felt something wasn’t right. An MRI scan was conducted and they discovered that he had a brain tumour that was deeply embedded across three parts of his brain. On initial review the consultants believed it to be a low grade tumour and he was placed on anti-seizure medication and he would have to come in for scans every 3 months to keep an eye on things but should otherwise carry on with his life as normal.

 

Unfortunately, this did not last for long. He suffered another seizure in January 2021 followed by a second MRI which showed areas of concern. We were informed of this on a Wednesday and Aman was scheduled for surgery on Saturday. Sadly only 10% of the tumour could be safely removed during the surgery, a sample of which was sent for evaluation. Aman had to go into the hospital and undergo the surgery alone as a result of ongoing Covid restrictions.

 

This led to the tragic diagnosis of a Glioblastoma Multiforme (GBM), which is stage 4 cancer. This is one of the most aggressive cancers with an average survival rate of only 12-14 months. Aman was given 4 weeks to recover from surgery before beginning 6 weeks of chemotherapy and intense radiotherapy. Once the 6 weeks of intense Radiotherapy was complete Aman continued with continuous cycles of chemotherapy.

In the meantime we privately funded a protocol with a naturopath from Australia which involved placing Aman on a ketogenic diet, eliminating all refined sugar and carbohydrates and started a programme of natural supplements and repurposed drugs.

 

We also sent off a sample of the tumour for DNA sequencing with CeGat, a gene analysis company in Germany, to try and determine if there are any mutations/traits within the tumour that could be targeted with medication or a personalised vaccine.

 

In August 2021, he started to become very confused, weak and unstable on his feet, he was taken into hospital and the MRI determined that he had a build-up of fluid in his brain and that the tumour was showing signs of disease progression. He had to undergo a second brain surgery to insert a permanent shunt in his brain to drain the fluid. His treatment path was also changed as the oncologist believed the chemotherapy was no longer working for him. He was given two weeks to recover from surgery before beginning with a different chemotherapy drug in September 2021.

 

We are now in October and Aman’s condition has further deteriorated. His short term memory has drastically been affected as well as his strength, sight, hearing and balance. Aman had to make two additional visits to the hospital as a result of this which eventually led to an emergency MRI showing further disease progression. Sadly the oncologist believes that the most recent chemotherapy drug is not working for Aman and has recommended a combination of two experimental drugs. These are not funded through the NHS and will need to be privately funded, costing anywhere up to £10,000 a month.

 

As we know that we are fighting against time we also want to proceed with peptide vaccines with CeGat which are formulated especially for Aman.

 

We have also been researching all sorts of alternative therapies and treatments that could benefit Aman as there are no more options available with the NHS. GBM is a very complex disease and every patient's tumour is completely different so there is no single treatment that works for everyone.

Managing Aman’s illness and symptoms has taken a huge toll on the family. We have dropped everything to provide round-the-clock care for Aman as he can no longer be left unattended. We are all desperate for Aman to have access to everything that could help prolong his life and give him the opportunity to have quality time with his young family.

 

We now need your help! We love Aman very much and want to do all we can to give him the precious time he needs and deserves. Any donation, however big or small, that you are able to make will be greatly appreciated and please share this on your social media platforms so we can raise the funds we need so Aman can keep making memories with his family. Please keep Aman in your prayers.