The patient and clinician’s perspective on the recent recommendation of ixazomib

Ixazomib was recently recommended for NHS distribution, to be used in combination with two other standard medications for the treatment of multiple myeloma patients who have received two or three prior lines of therapy. Ixazomib is currently the only oral-protease inhibitor permitted for use in Europe and the triplet (ixazomib with lenalidomide and dexamethasone) IRd combination is the first of its kind to be made available through the Cancer Drug Fund. Read the full news story here.

In this joint interview we delve deeper into the news story to find out both the clinician’s and patient’s perspective on the recent recommendation.  

Graham Jackson – Consultant Hematologist

What are the current treatments options for myeloma?

The treatment options for myeloma are expanding all the time and there has been a huge amount of innovation in the past years. For example, the decision from NICE to allow the prescription of the IRd combination, now allows UK patients to access a novel effective and importantly an oral agent.

What is the clinical significance of the recommendation?

This decision has been widely welcomed and applauded by physicians and patients. Patients will benefit from a significant amount of extra time in remission with little in the way of additional side effect burden.  In addition, there are many other new and exciting novel approaches to myeloma therapy including venetoclax and novel immunotherapy approaches as well as CAR-T cells.

How would you like to see treatment options for myeloma evolve over the coming years?

The outlook for multiple myeloma patients is constantly improving, with key combinations of immunotherapy and proteasome inhibitors now becoming available for long-term use.

An all-oral IRd regime has been shown to be very effective versus Rd treatments in placebo trials. I think one of the most important thing to note on NINLARO and IRd is that there is a significant improvement in terms of quality of life for patients, it is seen to minimize hospital visits for patients and improves overall quality of life including progression-free survival which is vital as it gives patients that extra time to do things that they enjoy.

We also know that from trials, IRd benefits all types of patients from high to low risk; high to low ISS stage patients and patients of all ages – young or old. Physicians in the UK are excited to have IRd in their armory going forward; I cannot imagine a single physician that would not want to recommend this.

John Ellwood – multiple myeloma patient

Could you tell us about your diagnosis of myeloma?

In early 2011, I had a blood test in connection with another health issue, which proved not to be serious, but someone spotted an irregularity in my white cell counts. This resulted in a referral where I was diagnosed with smoldering myeloma. In 2012, the myeloma became active and it came with very severe back pains.

Could you give us some further details of your treatment with ixazomib?

The lenilidomide/ixazomib combination worked very well and I only suffered minimal side effects of fatigue and mood swings. I call ixazomib the ‘gift of time’, because it gives you that little bit extra and although it is only 9 or 12 months, it is better than nothing. The fact that it is also an oral medication is another advantage compared to other medications; where a lot of time during the week was taken going to hospital and waiting for infusions.

How would you like to see patient care and treatment options for those living with myeloma evolve over the coming years?

For me, the more treatment options available to consultants can only be beneficial for patients in the coming years. It seems no two myeloma patients are alike in their response to the various drugs available. While carphilzomib has worked well with many patients, it didn’t have a lasting effect on me, so having different treatment options was very helpful. I am very grateful for finance released by the Cancer Drugs Fund to make ixazomib available to the NHS. The more options the better!

One of the main challenges of living with myeloma is the psychological impact. In February 2011, at my initial diagnosis, I was correctly told that myeloma is a ‘sword of Damocles’ – it could fall at any time. That is true every time a patient is in remission; no one knows when the disease may return, be it next week or in many years’ time. Living with that reality and the uncertainty it brings will be handled by every patient in their own way, but the assistance of trained clinical psychologists could prove a helpful development.

Read John’s full interview here