Cornish woman’s brain tumor treated with HIV drugs

A Cornish woman is taking part in a medical trial which will see HIV drugs used to treat several brain tumours. Jayne Sweeney, 57, from Mevagissey, said she was proud to be involved, even though the work led by the University of Plymouth could not cure her condition.

Scientists believe the already approved drugs ritonavir and lopinavir could shrink tumors in people with neurofibromatosis 2 (NF2), a genetic condition that causes tumors to grow along nerves. Although usually not cancerous, NF2 can cause symptoms such as loss of balance, hearing loss that gradually worsens over time, and ringing in the ears, and there is no current treatment.

If the tumors grow inside the brain, spinal cord, or along nerves in the arms and legs, people can experience weakness in their limbs and persistent headaches. The new 12-person clinical trial, led by Professor Oliver Hanemann from the University of Plymouth’s Brain Tumor Research Center of Excellence, will build on laboratory studies showing that HIV and AIDS drugs can slow and shrink NF2 tumours.

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Previous research has also shown promise in using the drug for other types of brain tumors. There are no current treatments for NF2, which affects about one in 25,000 to 40,000 people, other than surgery.

Prof Hanemann said: “This could be the first step towards a systemic treatment for NF2-related tumours, both for patients who have inherited NF2 and develop multiple tumours, and for patients who have a single NF2 mutation and have developed a tumor. as a result. If the results are positive and the research develops into a larger clinical trial, it would be the most significant change for patients with this condition, for which there is no effective treatment.”

During the year-long study, patients will undergo a tumor biopsy and a blood test before having 30 days of treatment with the two drugs. They will then have another biopsy and a blood test to see if the drugs have been able to get into the tumor cells and shrink the tumors.

Dr Karen Noble, director of research, policy and innovation at Brain Tumor Research, said: “What’s great about using repurposed drugs like ritonavir and lopinavir is that they’ve already been shown to have a strong safety profile in healthy people and those treated. for HIV, which means they can be translated more quickly from the lab to patients.”

Jayne Sweeney was diagnosed with NF2 in 1996. She has 12 tumors growing in her brain and has had five surgeries to remove tumors from her brain, ear and ankle.

Mrs Sweeney said: “The Retreat process is incredibly exciting – any progress to improve people’s lives is brilliant. A cure for NF2 is too late for me, but I am extremely proud to have been invited to the trial steering group, where I saw first-hand how passionate the team is about helping people with this disease.

“If we can find an effective drug for newly diagnosed people, that would be fantastic. For me, hearing loss is the worst thing about having NF2 because it’s very isolating and frustrating.”

Ms Sweeney underwent 15 months of chemotherapy and Gamma Knife surgery, with painful injections in her head.

“Finding better, kinder ways to treat the disease is so important,” she said.

In half of all NF2 cases, the faulty gene is passed from a parent to their child. If either mother or father have the faulty gene, there is a 50% chance that each child they have will develop NF2.

In other cases, the defective gene appears to develop spontaneously, but it is not known why this happens. Most people with NF2 eventually develop significant hearing loss and the condition worsens over time.

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