[siouxchiefParticipant]

Hi all,

My father aged 62 has suspected Myeloma (awaiting bone marrow result on Tuesday) so I have been doing some research and as a freaked out concerned son I have been getting some hope in regards to these kind of articles:

https://www.fredhutch.org/en/news/center-news/2018/12/multiple-myeloma-car-t-cell.html

1. Am I clutching at straws here or will it be like 10 years before these treatments make it to regular hospitals and it may be too late do you think?
2. I also notice NICE have approved 2 CAR-T treatments below but none cover Myeloma, are we any closer to NICE providing a NHS Myeloma treatment or can you go abroad and pay for it?

• For children and young people (up to age 25) with B-cell acute lymphoblastic leukaemia, if other treatments have not worked, NICE has approved the use of Kymriah® CAR-T therapy, via the Cancer Drugs Fund.
• For adults with diffuse large B-cell lymphoma (DLBCL) or primary mediastinal B-cell lymphoma (PMBCL), if other treatments have not worked, NICE has approved the use of Yescarta® CAR-T therapy and Kymriah®.
Obviously I’m a complete novice to understanding how all these CAR-T trials work so any thoughts would be welcome?

Thanks

[sarahdempseyParticipant]

Good afternoon

My name is Sarah and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry to see that you haven’t received a response yet but hope I can provide some information that may be helpful.

The adoptive T cell transfer (CAR-T cell therapy) you mentioned, is a new type of treatment that uses the body’s own immune system to kill myeloma cells. A lot of research is focusing on the potential role of the immune system in treating cancer and some myeloma treatments are already in use that work by modifying the immune system, such as the immunomodulatory drugs (IMiDs) lenalidomide (Revlimid®) and pomalidomide (Imnovid®). However, for clarification – adoptive T cell transfer is unlike any other immunotherapy treatments currently used in myeloma. Rather than using a drug to modify the immune system, a patient’s own immune cells are collected and genetically modified in a laboratory to enable them to kill myeloma cells.

At present, CAR-T cell therapy is not routinely available for myeloma patients in the UK – the APRIL trial (CAR-T cell therapy) is the only trial available in the UK for relapsed or refractory myeloma patients i.e. patients who have had at least three previous lines of therapy that have included a chemotherapy drug (e.g. cyclophosphamide or melphalan), a monoclonal antibody (e.g. Darzalex®), a proteasome inhibitor (e.g. Velcade®) and an immunomodulatory drug (Revlimid®, thalidomide or Imnovid®). Unfortunately, if your father has been diagnosed with myeloma, he would not meet the specific criteria for the trial at this time. However, if you wish to look at any other clinical trials currently available in the UK, please follow the link below to our clinical trial finder.

https://trials.myeloma.org.uk

Unfortunately, clinical trials investigating CAR-T cell therapy for myeloma patients is only in its early stages globally compared to other types of blood cancers (as you have mentioned above) which have been approved by NICE with certain guidelines. I hope this has been helpful but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

• This reply was modified 5 years, 2 months ago by  sarahdempsey.

[siouxchiefParticipant]

Thank you very much Sarah for the detailed reply it is really appreciated. My father today did get it confirmed via bone marrow result that it is myeloma. He wasn’t given a stage which I found interesting but the doctor did say it hadn’t impacted his organs although he has one lesion on his hip. He said there was no rush to do chemo straight away and it will start in a month as his is apparently slow progressing whatever that means. Any idea what stage that would suggest? Thanks

[sarahdempseyParticipant]

I am sorry to hear that your dad has received a confirmed diagnosis of myeloma.

For clarity – In myeloma, these plasma cells become abnormal, multiply uncontrollably and produce a large amount of a single type of antibody – known as paraprotein – which has no useful function. It is often through the measurement of this paraprotein or light chains (smaller part of the paraprotein) that myeloma is diagnosed and monitored. Myeloma is a very complex and individual cancer both in the way patients experience symptoms/complications, and in the way it responds to treatments – this can vary from patient to patient. This can also be said in relation to how slowly or quickly this paraprotein or light chain will increase – therefore each patient can require treatment at a different rate.

Patients are usually ‘staged’ at diagnosis. The most commonly used staging tool in myeloma is the International Staging System (see below for details). It looks at the levels of two proteins – beta 2 microglobulin (β2M) and albumin. Staging indicates the effect the myeloma is having on the body and can be used to help determine the bulk of the myeloma and may determine when treatment should begin.

The International Staging System:
• Stage 1. The level of β2-M is less than 3.5 mg/L, the level of albumin is more than 3.5 g/dL
• Stage 2. The level of β2-M is between 3.5mg/L and 5.5mg/L with any albumin level or the level of β2-M is less than 3.5mg/L and the level of albumin is less than 3.5mg/L
• Stage 3. The level of β2-M is more than 5.5mg/L

The presence of complications, caused by the myeloma damaging specific organs and tissues of the body, can also help to determine the characteristics of your husband’s myeloma. These are commonly referred to by the acronym ‘CRAB’ which describes the four major complications that are generally observed in myeloma:

• C -calcium elevation
• R -renal (kidney) damage
• A - anaemia
• B -bone damage

Results from blood tests, scans (X-ray, MRI, Pet scan) together with CRAB, will help determine when treatment should begin, what that treatment should be, and provide a baseline against which response to treatment and disease progression can be measured. I hope this has provided you with some further clarity but if you would like to speak in person (Myeloma Infoline: 0800 980 3332) or email us (askthenurse@myeloma.org.uk), please do so.

[siouxchiefParticipant]

Thank you very much for the information Sarah

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