As you may remember from my November column ^[1], I had to re­start treat­ment last fall after my doctor and I had observed a rising trend in my mono­clonal (M) pro­tein and light chain levels over the pre­vious six months.

My doctor put me on 25 mg of Revlimid ^[2] (lena­lido­mide) daily – a much higher dose than I had taken before – and 20 mg of dexa­metha­sone ^[3] (Deca­dron) weekly in an effort to push the myeloma back down into another re­mission ... or some­thing close to that.

After being on ‘treatment break’ from April 2011 to October 2014, I was very apprehensive about going back on these strong medications be­cause I knew it certainly would be an adjustment to be receiving treat­ment again.

I have to admit, though, that it doesn’t seem like half a year has gone by since I restarted treatment.

So how has it all worked out so far?

Fortunately, the treatment is working well. My M protein has fallen from a high of 1.05 g/dL (10.5 g/L) to 0.29 g/dL (2.9 g/L), and my serum free light chain levels are back to normal ranges, although the ratio is a bit low.

Surprisingly to me, my blood counts have stayed in normal ranges so far and I have not become neu­tro­penic yet. That was not the same after the autologous transplant I had in January 2010, when I easily became neu­tro­penic. The fact that the blood tests have been normal so far has also allowed me to take the treatments without interruption.

I have noticed, though, that my health is a bit more fragile now that I have restarted treatment. I take more rest than I did before.

I also need to juggle my activities around the treatment side effects. For example, the dex makes me quite hyper for about three days in the week, and I take a sleeping pill for two nights to counteract that. Revlimid has affected my digestive system, slowing it down considerably. After trying out different laxatives, I am now on ‘Lax a Day’ (polyethylene glycol). However, these are still mild side effects considering the benefits I am getting from the treatment. My favorite part of the Revlimid/dex cycle is the week when I am not taking Rev­limid, because I do not get as tired and I am more alert that week.

I now feel that I am functioning in two worlds: the world of the patient with blood tests, appointments, and all that it entails; and the world of a healthy person with my everyday life of family, part-time work, and interest groups.

One of my interest groups is our local myeloma support group, where I am known as a patient. Other interest groups are the choir, the needlework guild, and a book club, where people don’t necessarily know anything about my health.

People who know about my situation are quite considerate about it. However, for those who do not know anything about my medical history, I now find that I lack the mental energy to explain the issues of myeloma. I also notice that people tend to overreact when they hear the word cancer, and are so sympathetic that I have to reassure them that I am doing quite well despite being on treatment again. This all takes a lot of time and energy!

So, overall, I think I am actually doing pretty well. Perhaps this is a bit over-optimistic on my part, for my doctor and family want me to stay on treatments for the foreseeable future. Of course I will comply with that, since I want to be around as long as possible for my family and friends.

My choir will be singing the Beatles’ song ‘When I’m 64’ again this season. I just turned 64 last month, and I always smile when I sing that song, since it reminds me of my myeloma journey. And I am grateful to have reached this point in my life.

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The quotation for this month is from Lord Byron (1788-1824), an English Romantic poet and satirist, who said: “Between two worlds life hovers like a star, twixt night and morn, upon the horizon's verge.”