Urgently help privately fund treatment for PML

Carol (mum) was diagnosed with Non Hodgkins Lymphoma in 2011 and managed her condition well until 2020 when the disease progressed and she needed to start chemotherapy treatment. During chemo she contracted sepsis twice but continued to fight and successfully completed chemo and began a course of immunotherapy to stabalise her condition. In November 2023 a Pet scan showed something on her thyroid and she had a biopsy which showed she had developed Thyroid Cancer, around the same time we started to notice that her speech was slightly slurred which was put down to stress. Carol's speech got progressively worse and she underwent an MRI, CT scan and a further Pet scan which showed a couple of masses in her brain. Carol then had a lumber puncture which returned a negative result which meant that Carol then had to have a brain biopsy in February 2024. The brain biopsy confirmed that she had developed a condition called PML, an incredibly rare infection that attacks the white matter of the brain. Most people carry the virus, however when the immune system is suppressed, in Carol's case, with the chemo, the virus can flourish and develop into PML. The chances of developing it are 1 in 500,000 and most doctor's will never see a patient with PML, some maybe only once in their career. Currently Carol has little speech, she can say yes and no, memory and coordination problems. On 13 April Carol suffered a seizure and is currently in hospital receiving care. Treatment for PML is difficult because of the rareness of the illness, however trials have shown that a drug called Pembrolizumab can stop the progression of the disease and in some cases lessen the symptoms. The drug is commonly used to treat MS and Melanoma cancers, however because it is considered experimental for PML, funding isn't available on the NHS. If Carol had MS, lung cancer or skin cancer then she would receive the drug for free. Her Hematologist has made several requests to the NHS for funding Pembrolizumab which have all been declined and we have also asked the manufacturer of the drug to waive the fee which they have turned down. Carol needs to have three doses of Pembrolizumab which she can have privately at a cost of £10,000 per dose. If you have read this far then we appreciate it, and if you can give anything towards Mum's treatment we would be so grateful. She is a proud wife, Mum and Grandmother and we want her to get the help that she needs to start to make a recovery.

Any money raised after we have funded the Pembrolizumab will be put towards private physical therapy and speech and language therapy as research has shown that intensive PT and SLT can have a dramatic impact on recovery. Current NHS provisions are severly limited.

Thank you - Terry, Stacey, Neil, Hollie and family