[sammy65Participant]

Hi. Depends what test the GP booked. Light chains quantitative test is not a single myeloma diagnostic test. When you have increased or low light chains, doctor may order a special test to check what those light chains are doing. There is another part of the chains called heavy chains which will show if they were secreted by cancerous bone marrow. The GP may check your urine for Jones Bence protein and order electrophoresis test. That test will find out if monoclonal heavy chain/paraprotein is present. If positive for paraprotein you will be referred to haematology under cancer pathway for further investigation. There is a 2% chance that people have myeloma without secreting light or heavy chains affected by cancer, however the GP will monitor you to find out. I was initially not as suspect for myeloma, not anaemic, bones were fine, no pain, normal kidneys and calcium, but was fatigued; and paraprotein test showed suspect for myeloma.

[sammy65Participant]

Hi Anne,

I understand that the provider has withdrawn their proposal due to manufacturing issues of Car-T in UK. As you have said, the reasons are more complex than the one major reason. I would like to know what happens next to making Car-T available as treatment protocol in the UK. I have not looked at Car-T in US in detail as I am aware that it has been available in US for some time. The EU case is more interesting as it is more recent and its treatment ‘lines’ are similar to UK. Car-T has become available to EU patients recently, in February 2024 for people who who have received at least 1 prior therapy.

It was approved on the basis of a clinical trial which compared a medical specialist’s choice of either pomalidomide, bortezomib and dexamethasone (PVd) or daratumumab, pomalidomide and dexamethasone (DPd) until disease progression. It was found that people who received Car-T had a stronger and deeper remission compared to people in the standard treatment group.

Here is the link for Cartitude 4 trial: https://www.nejm.org/doi/full/10.1056/NEJMoa2303379

Regarding the side effects, Car-T has fewer side effects on immunosuppression than standard medications. Its main side effects are during administration of the treatment.

I would like to know if Myeloma UK is undertaking some actions on the government level to make Car-T available in UK. There is clearly a gap for a treatment with less immunosuppressive side effects that is already on the market. For people who are on lenalidomide maintenance like myself, neutropenia side effect can lead to breaks in the treatment and premature death. Most standard medications have this side effect, so Car-t can in principle give people a form of respite from those traditional side effects while keeping myeloma supressed.

[Author]

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