Hello, my name is Nicky, and my family and I are looking to raise EUR 100,000 for life-saving cancer immunotherapy treatment for my husband Justin who was diagnosed with an aggressive and deadly stage 4 brain cancer, a glioblastoma. Unfortunately we are not able to cover his treatment costs via the Dutch medical system so we need your help!
So how did we get here?
After experiencing severe headaches over a period of 6 months Justin was eventually rushed to the emergency room in January 2019 where an MRI showed a large tumour on his right frontal lobe. Doctors were shocked that he was still conscious and able to function considering how large the tumour was. He was immediately sent for surgery where the surgeons at VUmc in Amsterdam removed as much of the tumour as possible. We then waited for the diagnosis... We were devastated to be told he had stage 4 Glioblastoma which is a type of brain cancer considered to be terminal. It is essentially a very aggressive tumour, that often causes relapse due to cancer stem cells that can linger in the body after the tumour has been taken out. The median survival rate is poor with averages of between 18-31 months.
The Initial Treatment:
Justin then went through a gruelling few weeks of treatment which was 6 weeks of combined radiation and chemotherapy followed by a further 6 sessions of chemotherapy to try and blast any remaining tumour cells. His post treatment MRI came up clear with only residual damage leftover from the radiotherapy, we were so happy! He had to go back for MRI's every 3 months to check that the cancer had not returned and each MRI showed no new tumour growth, that is until June 2021 where a small shadow confirmed our worst fears... The cancer was back.
The Tumour Recurrence:
This was devastating news especially due to the fact we are expecting our first baby in September. Unfortunately the location of this new growth makes surgery not an option as it has moved to his corpus collosum which is the bridge in between the brain hemispheres and makes operating too risky. He can no longer receive radiotherapy as he was given the max amount allowed during his first round of treatment. So his options are very limited... But he has several factors that are in his favour, he is young and healthy. His tumour is IDH Mutant and methylated which means it is less aggressive than its IDH Wild counterpart and the methylated status makes it susceptible to chemotherapy. However... Glioblastoma is classed as an incurable cancer, the estimated survival rate from when it comes back is anywhere between 3-7months and while Justin's doctors believe he would most likely be on the longer side of this timeline we want to make sure he gets as much time as possible to be classed as a long term survivor of which there are few but they are out there!
The Treatment Plan:
We knew we had to look outside of the standard treatment options. With this type of brain tumour, every patient is given what is called the Standard of Care. It’s a one-size-fits-all strategy, and one that doesn’t treat the patient as an individual, just the disease and is palliative care only so it does not seek to cure it. Following extensive research we found an immunotherapy clinic in Germany (IOZK) that offers alternative treatment that looks at the patient as an individual. The treatment plan involves two lines of attack. The first combines TMZ chemotherapy with 2 additional ICD treatments - mEHT (Modulated Electrohyperthermia - which is similar to radiotherapy but only targets the tumour cells) and NDV (Newcastle Disease Virus). These additional therapies work to break down the genetic structure of the tumour cells to kill them off. Once he has completed these sessions we will then switch to our second line of attack - immunotherapy. This involves building a vaccine that will stimulate Justin's immune system to recognise the tumour and attack it. His tumour is currently being sequenced and analyzed so the doctors can tailor the vaccine specifically to his tumour to ensure maximum success.
Unfortunately this treatment is not yet covered by the Dutch medical system so we have to pay the full costs of these treatments which will come to around 100k. And while we will be putting our own savings into this we are still missing a substantial amount in order to fund this treatment so are asking for donations to ease the financial burden and give Justin the best chance at life possible!
Throughout this whole ordeal we have been determined to live our lives regardless. Since his initial diagnosis we have... bought our first apartment together, got a dog, got engaged, got married and are now expecting our first baby. We are going to fight this with everything we have and continue to live and enjoy our life for as long as we can!
Justin, Nicky, Baby & Marmite the dog
(Any funds that might exceed the amount we are raising for, will go straight to brain cancer research, helping other patients.)
DonatiesHoogste donaties weergeven
- G.H.C Berteler
- Thtjtfjy Iyutdxgbn
- Janien van Boven
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