A myeloma treatment story from a Christie patient

As well as providing standard cancer treatments, The Christie is also one of the largest clinical trial centres in the UK. This means that patients who might have no further standard treatment options available can be given a second chance.

Here, one clinical trials patient talks about their experience at The Christie after they were diagnosed with melanoma.

I was in hospital, in the middle of the night, in severe pain when they told me I had myeloma. After asking what that was, my next question was, “How long do people usually live?” The consultant said, “3 years is the average.”

In retrospect, I think he was being intentionally conservative as a safeguard for him and me. He later told me no other cancer treatments were advancing as fast as myeloma. Effective new drugs are constantly coming out. Predictions therefore go out of date.

And anyway, predictions are statistics, which can be useful tools for making decisions in medicine, especially on a large scale. But on a personal level, we are individuals with our own unique make-ups and our own stories, of which myeloma is only a part, albeit a significant one.

2 things have helped me to keep living: treatment, and a reason to live. In a way, I feel fortunate to have a condition that is not considered curable, because I can’t fall into the trap of trying to “defeat death”, which always seemed to me like an unrealistic aim, given that we all die. It might be possible to postpone it though, and there is much one can do, and much that is available, to postpone death by myeloma.

I have been helped most wonderfully by many people, and I would like to mention here those who work with myeloma in the healthcare system. In my case, due to my relative youth (46) and the aggressive form of myeloma I had, I was quickly invited onto a medical trial in my hometown of Norwich. The drug was called daratumumab. Now it is available through the NHS, because it is effective. It certainly worked for me: I went into full remission for a couple of years and suffered very few side effects.

Eventually it stopped working and I changed to pomalidomide. It worked too and didn’t give me many problems aside from tingly toes and feet. Viewed as a kind of fee in exchange for living for some more time, tingly feet seem cheap at the price. Pomalidomide stopped working too after another 2 years or so; pains started coming on in my ribs, which turned out to be slight holes or breakages.

I had always talked to my consultants a lot about what new drugs were coming down the pipeline, so when pomalidomide stopped working, I asked if I could be put on a BiTe trial. BiTe is only being tried out in Manchester and London at the moment. After visiting both trial sites, I chose Manchester, mainly because they offered me to start sooner, and I feared more damage to my skeleton if I waited.

I really liked The Christie and the doctors and nurses I met there when I visited. Dr Searle, who leads the BiTe trial among things, was very down to earth and I felt I could talk to her easily. She was clearly very, very knowledgeable, but she wears her knowledge easily and is like a collaborator in what is on offer, rather than a professional administering something from up high. I think it’s really important to establish a good rapport with the people who are giving you your treatment.

Some doctors are naturally optimistic and hopeful, and I find that an immense boost. One of the haematologists at Norwich, Dr Gomez, epitomises this. He is invariably enthusiastic and hugely friendly whenever I go to see him. He stands up and shakes my hand when I walk in. I feel the energy of hope filling my body and I equate that energy with the feeling of getting better, which one has long known as the occupant of one’s own body.

While doctors rightly see things in scientific terms, we see them from the point of view of our own experience. I would advise any myeloma patient to honour that point of view and bring it to hospital in expectation of collaboration: you as the expert in your experience and the doctors as the experts in the mechanisms of disease and its treatment.

Aside from that, I try to be careful not to regret or resent the discomforts and periods of disability I do suffer. I don’t always manage; I find lying in bed quite depressing, truth be told. And I worry about my children, the youngest of whom is 7.

But every period of sickness, pain, fear and uncertainty I have gone through, without exception, has somehow ended eventually in a sense of greater gratitude, more certainty about the things I believe, and a greater ability to have compassion for others – all of which are gifts which one could not actually acquire by graft or guile.

Myeloma, therefore, in a most unexpected way, has been something of a gift.

Last updated: September 2022