Life saving cancer treatment for Josie

Hello, my name is Laith and I have set up this crowd funding page for my wife Josie. My aim, along with her family, is to raise money for life saving treatment.

Josie is 35 and we have been inseparable for almost 22 years. We have been married for 12 years and are blessed with two beautiful daughters, Rebecca 8 and Sophie 4. Everyone who knows Josie will agree she is a kind, happy soul who is willing to help anyone in need. She is the most creative and talented person I know, with her main passions being painting, drawing and digital art. In the past she has worked in different roles within the NHS and as a carer in the community.

In June 2022 I noticed that a mole on her back had changed. She was checked by the GP who put through an urgent 2 week referral to dermatology. Upon examination, she was told by the dermatologist that it didn't look like anything to worry about, but they removed it for biopsy just to be sure. A few weeks later we were told it was a deep penetrating nevus, extending to the deep dermis layer. Most importantly, we were told it was benign. We breathed a huge sigh of relief!

A few weeks later, I noticed two more growths emerging through the fresh scar tissue around the biopsy site. We immediately notified dermatology who requested another examination. They were concerned and perplexed as moles don’t usually behave in this way, so opted to remove straight away. The second biopsy was sent away to a specialist to confirm diagnosis, and we were again told it was a benign deep penetrating nevus and nothing to worry about. They advised a wider local excision to prevent any regrowth. However, before the procedure could even take place, a third regrowth was showing. The dermatologist said not to worry, to go ahead with the wide excision, and advised that they would remove enough surrounding tissue to finally put it to bed.

Josie was left with a 100mm wound in the middle of her back, and was referred to the plastics department to take over her care and recovery. They immediately advised a CT scan as standard practice, which highlighted enlarged lymph nodes. We were told not to worry as this could be caused by a number of things. They decided to take a closer look at the nodes via ultrasound, and took further biopsies of these areas. We were repeatedly told that they didn’t expect anything serious as all the previous biopsies had come back clear, they were just covering all bases as she had been referred to another department and they needed their own set of tests. This whole process had taken 9 months, but on the reassurances of those professionals involved, we carried on with life as normal.

In March 2023, Josie received a phone call from the hospital with her latest results. They advised her that melanoma, an aggressive form of skin cancer, had been detected in multiple lymph nodes. We were in complete and utter shock. They expressed they were also very shocked and she was immediately referred to oncology.

Ten agonising days later we met with her oncologist who diagnosed Stage 3c metastatic melanoma which had spread to her lymphatic system. As you can imagine, we were completely overwhelmed and full of fear, but Josie was determined to be as positive as possible to retain some sort of normality for our girls and to give herself the best possible chance to fight the disease.

Her oncologist set out his initial plan of 4 rounds of immunotherapy, each spaced 3 weeks apart. She was very nervous as the information and research she was given highlighted possible side effects, but there was no other option.

She felt ok for the first week post the initial treatment, but into the second she started to show signs of possible side effects. She was checked by the specialist oncology nurse and admitted to hospital. They did various tests and it was found that her liver function was not great, a common side effect. After a week in hospital, she was sent home but required blood tests every 2 days to monitor her liver. Her oncologist advised to postpone the next round of treatment by a week to give her liver time to recover.

A week later she was given the go ahead for the second treatment and that’s when things took a further turn for the worse. It was apparent within a few days that something wasn’t right. Josie started experiencing difficulty with swallowing, breathing, vision, and was suffering with extreme swelling and fatigue. We naively put it down to further symptoms of the immunotherapy and did our best to manage this from home.

Her specialist Macmillan nurse wasn’t happy with the symptoms Josie was suffering, so we immediately went to the acute oncology team. She was admitted again and more tests were undertaken, but the on call oncologist expressed that he feared something else was going on and that the symptoms were not just down to immunotherapy. He briefly discussed a condition called myasthenia gravis, a neurological autoimmune disease that affects the nerve signals and commonly presents itself in the throat/eye area first. With this now the suspected culprit for Josie’s symptoms, specific test were carried out to confirm this diagnosis.

During the second day in hospital, Josie’s symptoms, particularly her breathing, became much worse. I received a call at 4am from the lead consultant in ICU explaining that Josie had been transferred to their unit to be put on a ventilator. Her latest tests has shown her blood was filling with carbon dioxide and her lungs were shutting down. She could breathe in ok, but the muscles in her lungs weren’t strong enough to expel. She also explained that she needed a nasogastric tube fitted, so if her condition worsened and they needed to put her in a controlled coma, they would still have access to administer medication.

I met with the doctor who explained how incredibly unlucky Josie was, not only to have been recently diagnosed with advanced cancer, but now a serious autoimmune disease, with added complications because it had been induced by the treatment we hoped would cure the cancer. This is extremely rare, with only a few known cases as immunotherapy is still a relatively new treatment.

Unfortunately this meant she could no longer have any immunotherapy as it would trigger the MG. It was an extremely scary time, but the ICU team were incredible and I’m so grateful that they acted so fast - if they hadn’t, she wouldn’t have made it through that night. After a week in ICU, Josie was transferred to a high dependency neurology ward where she stayed for 3 further weeks. After many more tests, procedures and finding the correct dosages of medication, she was discharged.

It was so good to have her home with us, even though all she could do was try to rest. However, this was short lived as 6 days later she was admitted again as the symptoms of MG were still very prominent and her body was is crisis. She was given several IVIG infusions, but it made little difference, so they undertook a blood plasma exchange. This required a main line to be inserted directly into the jugular vein in her neck and 10 days worth of treatment.

All went well and it soon became clear that this had improved her symptoms, and after another 4 weeks, she was discharged. We could now get back to focusing on fighting the cancer, whilst doing all we could to manage the MG in the background. By this stage, Josie hadn’t had any form of cancer treatment for over 3 months.

Her oncologist was still apprehensive to move forward with any form of treatment as the last attempt ended in disaster, so opted to wait for her next staging CT scan to have a better idea, depending on results, on how to proceed.

Josie had her scan a week later and results showed that the tumours in her lymph nodes had increased in size, which meant the two rounds of treatment she had endured, had had no effect on the cancer. It was agreed that another scan would be carried out 8 weeks later, which would enable him to compare results and establish how fast it was growing and spreading. We were bracing ourselves for a terminal diagnosis.

The most recent scan has shown that shadowing has now appeared on both lungs. They don’t yet know what this is, but melanoma is known to most commonly metastasise to the lungs and brain. She still isn’t allowed any treatment, and we have to wait a further couple of months for another scan.

Josies situation is becoming desperate and we have started to look further afield at options. We are so grateful to our amazing NHS, but we do understand that they can only offer treatments approved or financial viable.

After lots of research, I have found a treatment that is only offered in a few countries at present - Tumour-Infiltrating Lymphocytes (TIL). We understand it is only at trial stage in the UK and not an option for Josie via the NHS.

TIL Immunotherapy uses your own cells. Specific cells called tumour-infiltrating lymphocytes are removed from your cancer and isolated in a specialised laboratory. They are then grown to very large numbers and injected back into your body. TIL is very effective in patients with advanced metastatic melanoma that have had little or no benefit from conventional therapies. About 50% of these patients show improvement with TIL and approximately 25% of patients are cured of their melanoma. However, because TIL is very cutting edge, this therapy has very limited availability. There are only a handful of medical institutions in the world that currently offer TIL.

As I am sure you can imagine, I am utterly heartbroken that my wife, the mother of my young children and my best friend is going through this. Our whole family is devastated and heartbroken, and we want to do anything we can to give her the best chance at recovery. Our girls need their mum

and I need my wife. Her mum, sister and wider family need her to beat this awful disease!!

This treatment feels like our only viable option at present, but it is very expensive (over £100,000) and could never be an option for us without the help from others which is why we’ve set up this crowd funding page. I am unable to work as I am now a full time carer for Josie and our girls. We all just want this nightmare to be over.

THANK YOU to each and every one of you who has taken the time to read this far. If you are able to share and donate, it will go directly towards this potentially life saving treatment. Our aim is to help Josie prolong her life or even beat this horrible disease for good. X