Back to the big C - In some cases, proton beam therapy is used to help treat this rare cancer, but unfortunately the tumour was too large and aggressive to treat using this method. We were informed that she would need surgery to remove her eye, again another shattering moment for all of us. We didn't know what this would mean for mums way of life, but for those of you who know our mum and her journey over the last few years, she has shown nothing but shear determination and positivity. Losing her eye has not stopped her living her best life, she was back in the drivers seat, back to work and doing what she does best within 6 months- cooking and painting, life seemed normal again.
Alas, there were the hospital visits every six months and with every clear result that came back was another goal, another 6 months of breathing space for us all, we still had mum in our lives, the way we have always known her.... the elephant was always in the room though, we knew this cancer was aggressive and it was always a gut wrenching feeling waiting for the phone call for mum to let us know the latest results from her MRI, and unfortunately with time, the worst happened. In November 2019 (2 years later) our worst nightmare was confirmed, the liver showed small lesions which were cancerous and inoperable and with that came the news that there were very limited treatment options in Scotland for her type of cancer. She was offered a treatment which is mainly used for Cutaneous (skin) Melanoma, immunotherapy. There was less than a 10% chance of it working...and unfortunately it didn't work, the scan showed that the lesions were not shrinking and treatment stopped. From then, mum was on an early phase trial for 6 months, but again this treatment has not been successful in shrinking the tumours.
We needed a miracle....
There is one last hope for our mum, Chemo-saturation Therapy (Delcath), unfortunately unavailable on the NHS in Scotland, HOWEVER, it is available privately at the Spire in Southampton. The response has been remarkable in treating patients with eye cancer (40-60% success rate) and is available as standard procedure in several other countries (Germany and others in the EU). Until NICE (National Institute of Health and Care Excellence) approve this treatment to be used on the NHS in England and even if approved it will not be available to patients living in Scotland. Patients wanting to try this option will need to self fund for their own treatment. As mentioned, Chemo-saturation has a very good response rate which directly targets the liver and does not affect the rest of the body, there are limited side effects too, which is great news for mum.
Unfortunately Covid has halted many trials (and a lot of other things!!) including this one, meaning it could be quite some time before it becomes licensed and free under the NHS, that is time that she doesn't have....
Our family are trying everything they can to help raise funds desperately needed for mum to receive this treatment, but at £40,000 per session and with six treatments usually needed to complete the course, it is very much out of our reach.
Ocular Melanoma is extremely rare, in Scotland an average of 40 people a year will be diagnosed with this cancer, and because of this, treatment options are extremely limited. This is why we have turned to Go Fund Me, we would not ask for everyone's help if we didn't think our mum had a chance of beating this awful disease, but she is otherwise fit, healthy, her liver is in excellent condition and of course she is only 54 years old.
She desperately wishes to see her youngest daughter get married in spring and watch her 3 adorable grandchildren grow. It is so unfair that there is a treatment out there but unless you are extremely well off it is unavailable to most people suffering with this disease.
Please help us in anyway that you can...donate, share or spread the word!
Love the Maltby Girls xxx
- Suzanne Stewart
- Susan Jones
- Adarsh Singh
- Esther Krawczyk
- Marnie McCormack
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