Recently I finished a needlework project that was a lot of work. It was a wedding sampler for my daughter and her hus­band who got married in 2014. Why did it take me so long to finish it, I wondered.

I realized that I had a lot going on in my life in the last six years, in­clud­ing treat­ments for mul­ti­ple myeloma. I also realized that doing stitching helps me to relax during stressful times.

I keep a detailed list of my stitching projects. Looking over this list, I can see that I would start projects when I felt quite well, and then they would be forgotten when I had med­i­cal issues. My goal now is to finish these projects, and not leave them untended. So I work away on them gradually, but I still start new projects also. Like many other stitchers, I do have a lifelong supply of projects in my stash!

Even though I have been a myeloma patient for over 11 years now, I feel quite well most of the time and am extremely grateful for all of the care and treat­ments I have re­ceived that not only saved my life but have given me back a good quality of life. My quality of life might not be what everyone who is perfectly healthy would like, but it allows me enough time to pur­sue in­ter­est­ing ac­­tiv­i­ties. I try to stay fit, keep up with paperwork, and pur­sue hobbies. I have found that I like writing and edit­ing. I think that most people would like to have such a lifestyle, especially if they are ap­proach­ing age 70, as I am.

Given that I have undergone var­i­ous treat­ments so far, I thought I would share my ex­peri­ences with the side effects and how I addressed them:

My initial treat­ment in 2009 con­sisted of Velcade (bor­tez­o­mib) plus dexa­meth­a­sone. At the time, Velcade was only avail­able as an in­tra­venous in­fusion, and I needed to take an anti-nauseant, Kytril (granisetron), and hydrating fluid with that. I had quite a bit of nausea from that treat­ment, and the veins in my hands appeared to be collapsing. For the nausea, I took Kytril at home also, be­tween treat­ments, and I ate very lightly and drank ginger ale. I couldn’t do much about the collapsing of the veins except to use the right hand at one treat­ment and then the left hand the next time.

I also got mild neu­rop­athy in my feet. It manifested as a numbness and tingling in the front of the foot, which has stayed with me per­ma­nently. My doctor pulled me off treat­ments after only four cycles since he was worried about the neu­rop­athy getting worse.

The dexa­meth­a­sone caused sleeplessness and strange imaginations. I did not know then that a sleeping aid would have helped me to deter those effects. Instead, I did not man­age the sleeplessness and imaginations well.

So, in retrospect, the treat­ment was not really tol­er­able, but it did the job of beating back the myeloma plasma cells to a really low level, so I did not mind putting up with the side effects.

I then had a stem cell trans­plant, which was a chapter in and of itself. In summary, it was not tol­er­able in everyday terms, but it helped to keep the myeloma at bay.

After the trans­plant, I took Revlimid (lena­lido­mide) plus dexa­meth­a­sone at var­i­ous times through­out the past years.

The first time was in 2010, for a year, when Revlimid was newly ap­prov­ed in Canada. I ex­peri­enced low blood counts, especially low neu­tro­phil levels. As a remedy, my doctor would some­times have me skip a week or two of treat­ment so that my blood counts could recover.

Once my myeloma reached almost undetectable levels, I went off of treat­ment until 2014. Of course, that was the best time in terms of tol­er­a­bil­ity. I felt good and just hoped I would not relapse. However, it seems that most patients with myeloma do suffer relapses, and so did I.

I went back onto Revlimid plus dex that year. I wasn’t keen to go back onto treat­ment but felt I had no choice. This time, I took the sleeping pill trazadone to help with the dex side effects, which also in­cluded talkativeness and confusion. I do simpler tasks for a couple of days, with great energy. I try to be self-aware that I might be bothering others if I talk too much. In addi­tion, I don’t drive for a couple of days after I take the dex. The main prob­lem I had with Revlimid this time was gastro­in­tes­ti­nal issues. I tried to modify my diet and took over-the-counter med­i­ca­tion and I was able to man­age the issue.

Although I was told I would now be on treat­ments indefinitely, life can take twists and turns that affect pre­vi­ously made plans.

In 2016, I was diag­nosed with early-stage breast can­cer and needed to undergo surgery and radi­a­tion. In order to give me the best chance to beat that can­cer, I went off the myeloma treat­ments again. This time, to my surprise, the myeloma counts stayed low on their own until 2018, when I went back onto Revlimid plus dex. I had the same tol­er­a­bil­ity issues as be­fore, mainly gastro-intestinal and mental, so I used the same tools as be­fore to combat them.

Since my myeloma markers had once again dropped sig­nif­i­cantly, I went off treat­ment until I re­lapsed again. The “tolerability” of this de­ci­sion was not so much physical, but emotional. I had a com­plete dread of start­ing treat­ment again. I kept watching as the counts crept up, and wondered every month if this would be the one when I would have to start treat­ment again. When the counts became high enough last fall, I started a regi­men of Dar­za­lex (dara­tu­mu­mab), Revlimid and dex, which I have described in pre­vi­ous columns.

Now I am coping with quite a few drugs in my sys­tem. The addi­tion of Dar­za­lex has meant that I need to go to the in­fusion center because it is admin­istered in­tra­venously. I get very hydrated on the in­fusion day since there is more than a liter of fluid admin­istered, over 90 min­utes. I am at the main­te­nance level of having it every four weeks now. Along with the Dar­za­lex, I take the dex, an anti­his­ta­mine, and acet­amin­o­phen (Tylenol, para­cet­a­mol) (to prevent fever).

I start the Revlimid cycle that day also, and I am taking a main­te­nance ther­apy, anastrozole (Arimidex), for the breast can­cer. Since both Revlimid and anastrozole can cause blood clots, I also am taking Eliquis (apixaban) twice a day, every day.

I do not notice much in the way of side effects from Dar­za­lex, but on my Dar­za­lex treat­ment day, I feel just ex­hausted by the end of the day. Other than that, I con­sider it to be quite tol­er­able.

The Revlimid is once again causing gastro­in­tes­ti­nal prob­lems, so this time my doctor put me onto the bile acid sequestrant Olestyr (Questran, cholestyramine for oral suspension). That has helped me quite a bit. All along with the Revlimid, I some­times have had severe cramps in my calves or milder cramps in my hands. I find that staying well hydrated (sometimes I take an elec­tro­lyte drink such as Gatorade), stretching, or just a acet­amin­o­phen help.

I really never thought that as I got older I would have a med­i­cine cabinet full of pills and potions. I made a chart to keep track of all of these med­i­ca­tions, since it is easy to forget to take them some­times. However, all in all, my treat­ment regi­men is tol­er­able, and I do have time for my other ac­­tiv­i­ties in life. I just have to remember to take the med­i­ca­tions.

───────────────── ♦ ─────────────────

The quotation for this month is from Walt Whitman (1819 – 1892), American poet, essayist, and journalist, who said: "Keep your face always to­ward the sunshine – and shadows will fall behind you."