John Ellwood discusses the myeloma treatment he underwent following his diagnosis with myeloma. To find out more about myeloma treatment options, check out our exclusive interview and news piece.
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 smouldering myeloma. In 2012, the myeloma became active and it came with very severe back pains.
Can you give us an outline of the treatment you received?
I immediately received treatment for three compressed vertebrae in the form of a vertobroplasty. This reduced the discomfort and gradually improved my mobility. I was then put on a 3 month chemotherapy course of CDT (cyclophosphamide, dexamethasone and thalidomide) to reduce my paraprotein levels and get me ready for an autologous stem cell transplant. This gave me good remission for 2 years.
In October 2014, my paraprotein levels started to increase again and I suffered five further compression factors in my spine in May 2015. After a second vertobroplasty, I was put on a trial for carphilzomib (Kyprolis) for 6 months, this again brought the paraprotein levels down to zero, but unfortunately only for about 6 weeks. After a failed stem cell harvest aimed at a second autologous transplant, I was put on a new chemotherapy regime of lenilidomide, dexamethasone and ixazomib (Ninlaro) for 8 months. In November 2016, I received a donor stem cell transplant, using my brother’s cells. I have been in full remission ever since.
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 time. 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.
Is it possible to ‘live well’ with myeloma? If so, how?
At my diagnosis I was told I should be able to enjoy a reasonable quality of life. During remission periods and even at times during treatment, I have found that to be true; although I realise that myeloma affects everyone differently.
For me, three things have proved crucial.
Firstly, having a really good support system in place has been invaluable. My family, friends and the staff at the Churchill have been everything I could ask for – concerned, available, caring and understanding. Having this network has been integral in making sure I haven’t gone ‘in on myself’, with friends going out their way to learn about the disease and Churchill staff offering excellent advice.
Secondly, stop viewing the interaction with myeloma as a fight and more as a journey. The metaphor reflects that while there are ‘battles’ to be fought along the way, there are opportunities to ‘admire the scenery’ as well. Be that an adjusted working life, more time with family and friends, the chance to reassess priorities and explore new opportunities. The unknown can be frightening, but it can open up new possibilities.
Thirdly, learning to ‘enjoy the moment’. When you are given a prognosis of this kind, time suddenly becomes hugely important. Myeloma patients, while in remission, often feel healthy and making the most of these moments becomes important. I have found myself slowing down and taking note of my surroundings; taking pleasure in the present instead of plunging headlong into the next activity. Keep well informed, occupied and establish a routine that works for you and stick to it– whatever works!