Multiple myeloma: "We must accept our new normal and make the best of the time we still have"

Hello Yerevan, thank you for agreeing to share your story with us on Carenity.

You have multiple myeloma. Can you tell us about your initial symptoms? What prompted you to seek help?

I fell ill in 2012. I had been fine for decades, never even had a flu. However, I had peridontitis (a serious gum infection that damages the gums and can destroy the jawbone), which had always given me problems with my teeth. One of the theories behind the onset of myeloma is that it is the result of a long-term infection, who knows if that was the cause for me.

At one point I got a bad ear infection, followed by a period where I felt exhausted all the time. I was constantly short of breath and I didn't understand why, but when you're used to feeling good you think "it'll pass". Then the back pains started, they were very strong and sometimes happened at night. They came and went. An orthopaedist told me it was due to scoliosis, but I wasn't convinced.

I also kept losing weight for no reason. One day my hairdresser, who has known me for a long time, asked me what was wrong with me, she was worried about my appearance. Before she left, she looked at me in a particular way and said something like "take care of yourself". Her look struck me and I decided to investigate further. I can say that she helped me not to waste any more time!

I went to a smart young doctor I knew, he ordered specific blood tests "to exclude some serious diseases" he said, but he made sure that I understood that they were still a possibility.

Can you tell us about your diagnosis? How did you react? Were you prescribed any treatments?

As soon as my doctor heard the results, he told me to go to the emergency room and be admitted. A few days later, the haematologist gave me the bad news with great tact: he made it sound as if all I had to do was go regularly for treatment and everything would be fine. He said that survival was generally ten years. That wasn't true - almost half of all myeloma patients don't make it past five years - but ten years must have seemed nicer for him to say.

Stem cell transplantation is an experience that varies from person to person, and for me it was horrible. For months the flayed walls of my digestive system gave me excruciating pain and kept me from eating normally. When I got home I looked in the mirror and said to myself, "I want three things. Hair, muscles and a little bit of fat on my bones". It took me six months to get it all back.

Where did you find your strength and support when faced with multiple myeloma? Were your loved ones there for you?

My husband and I are very close couple, and naturally he reacted by feeling anguish and fear, and suffering when I was ill. Unlike me, he manages to focus on other things than my illness most of the time now. My daughter has also suffered and continues to worry about me, but as I am doing rather well, she is trying to be optimistic. We all hope that I will live long enough for other treatments, such as CAR-T cells (a new immunotherapy), to cure myeloma.

On my end, I reacted to the shock by becoming emotionally empty. Seven years on, this hasn't changed. On the outside, I am the same as before, sociable, optimistic, always ready for a laugh. But on the inside, I've lost the ability to relax. In seven years, I let myself go three or four times, for a few minutes, and it was beautiful, but I can't repeat the experience more often. For example, I like to dance, I used to enjoy summer festivals, I was carefree. Now, as much as I want to, I can't do it.

I would say that my first wish is for them to find a cure, my second wish is to be able to relax like before. Sessions with an oncopsychologist (a psychologist specialising in the issues faced by cancer patients) have not helped either.

When I think of the past, Dante's verses come to mind: "There is no greater pain than to remember a happy time when one is in misery, and this your doctor knows".

In 2015, the insidious disease had infiltrated my stomach in the form of AL amyloidosis. In hospital I started taking lenalidomide (REVLIMID®), which together with cortisone fortunately got me out of trouble.

Has multiple myeloma changed your outlook on life and the future? If so, in what way?

Today, I am in remission. I have to sleep a lot, but otherwise I am well, and able to do my twenty laps in the pool, which I like so much, two or three times a week. It helps me to devote myself to my intellectual interests, but life is certainly not the same as before.

What words of advice would you share with other members living with multiple myeloma?

Don't despair, in the space of a few months I've gone from half-dead to back in good shape twice already. We can only accept our new normal and make the best of the time we still have.

Many thanks to Yerevan for sharing her story with us on Carenity!

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