Several months after I had my stem cell transplant, my doctor suggested that it would be a good idea to begin maintenance treatment with Rev­limid (lena­lido­mide). He believed that main­te­nance was likely to lead to longer pro­gres­sion-free survival. I remember him saying that, in his experience, main­te­nance therapy often put the myeloma into hiber­nation. That sounded good to me – long-term hiber­nation, I hope.

He also explained to my husband Graham and me that he thought that the main­te­nance therapy might lead to longer over­all survival. At the same time, he said that sometimes side effects related to the maintenance ther­apy meant that it had to be dis­continued, as everyone reacted dif­fer­ently to this medicine.

I can't say that I was wild about the idea of maintenance but, as it was only for a year, I felt that I would go with the program. I had pre­vi­ously been imagining a 'drug-free' time where I could maybe 'forget' about myeloma, blood tests and medicines.

So the year went by and I coped fairly well with the regimen. But, of course, it was not a picnic in the park!

My neutrophils remained low, and I succumbed to infections from time to time. I entered the special gastro­intestinal world of wavering between constipation and diarrhea; I still don't understand that waiver, but it is real. The neuropathy, which I had suffered from for many years, also increased a bit, but it was controlled quite well with Lyrica (pregabalin). I hated (and still hate) the sort of chemical tiredness that creeps up on me in the afternoon, but I have always tried to ignore it as best I can.

From time to time, I wondered if this treatment was really necessary. It could be that the myeloma was 'hibernating' on its own and that the Revlimid was an unnecessary extra. I read the many Myeloma Beacon articles and comments on the topic and again found lots of different opinions and treatment options. Clearly there were trials going on all over the globe and many dilemmas for doctors and patients.

The situation reminded me of the “Let's Talk” resources for children that I wrote for many years. These resources were designed to encourage young people to consider scientific dilemmas. Many of the activities used story lines and scenarios to engage the youngsters and help them to imagine the situations that society and individuals face.

And now I felt that I had a new dilemma all of my own, one that I shared with many people in the myeloma world. Pros and cons, advantages and disadvantages, no 'right' answers, all the points that I had been trying to bring out in my resources. Maybe I ought to write a new resource: Let's Talk Myeloma!

Once the first year of maintenance was coming to an end, my doctor said that he thought I should continue with the maintenance treatment, but at a reduced dose. He felt that I was doing well and that the potential advantages outweighed the risks. We talked about the fact that nobody could tell if I needed this treatment – nobody could tell if it was the Revlimid that was keeping the myeloma at bay.

Everyone seemed to feel that I was coping. I sometimes think that coping means something a bit different depending on which side of the 'little white pills' you find yourself upon. But of course I don't say much; I underplay the side effects because if this is the best thing for me, I don't want it to stop, do I? Dilemmas!

So now that the two-year mark approaches, I have to consider whether continuing further maintenance treatment, perhaps until disease progression, might be a good plan. But I'm not so sure. I've been very inspired by fellow sufferers who have a drug-free holiday.

I'm coping (!), but it might be so wonderful to have some time away from drugs, time to regain more of the 'old' Marje. I don't know how good it could be. In my mind, I feel it might be time for more fun, more skipping about, and more freedom to travel.

But is it a good idea?

Dilemmas, dilemmas, dilemmas!