I find the Myeloma Beacon patient columns ^[1] and forum ^[2] very in­for­ma­tive and use­ful, but they are surprisingly short on what comes with relapse when there are no more realistic treat­ment options. I’m facing that situation now and thought I’d chronicle my journey along this next part of the road in a regular column, in hopes that it will be of use to others.

I am 81 years old, diag­nosed in June 2017, at age 79, when I sneezed and broke two ribs. I went on a reduced-dose Revlimid (lena­lido­mide), Velcade (bor­tez­o­mib), and dexa­meth­a­sone regi­men (“RVD lite”). The treat­ment caused neu­rop­athy in my feet and added a rare auditory neu­rop­athy that muffles my hearing, so it was dis­con­tinued after a few months. My hearing remains im­paired and my feet numb.

While on RVD lite, my lambda free light chain marker went from an initial level of 269 down to 29.  The high end of the nor­mal range is 26, but I was told that up to 50 is acceptable at my age. In August 2018 my lambda marker began creeping up – 59, 85, 105 – and in Octo­ber I went off RVD lite and started Kyprolis (car­filz­o­mib), Pomalyst (poma­lido­mide, Imnovid), and dexa­meth­a­sone.

The new treat­ment regi­men took my lambda free light chain level down to 91 and then 86, but then back up to 100. The side effects, how­ever, in­cluded heart issues with dangerously high blood pres­sure spikes, which at one point caused me to pass out and convulse. I should mention that I have one coronary artery stent, which is about 17 years old, and I also have mild COPD (chronic ob­struc­tive pul­mo­nary dis­ease). And arthritis. (I am an old man.)

I also re­ceived monthly in­fusions of zoledronic acid (Zometa) to strengthen my bones. Those even­tu­ally were switched to an in­fusion every three months.

So next was Empliciti (elotuzumab) and dex at the end of De­cem­ber 2018. That regi­men initially knocked my lambda  marker down to 92, but in March of this year it shot up to 191. The myeloma was eating it for lunch!

So in April I switched to Darzalex (dara­tu­mu­mab), Velcade, and dex and my lambda free light chain level went down to 89. Yay! It was worth the fatigue, shortness of breath, and the limited energy. Treat­ment was interrupted, how­ever, by a bout of pneu­monia, which in­tra­venous antibiotics knocked out in a few weeks.

When I resumed the Darzalex regi­men in late May, my lambda level was up to 230, but it got knocked back down to 160. My good reac­tion made me a prime can­di­date for a shorter in­fusion time, but that sent my nor­mally low blood pres­sure up, so I stayed on what was basically an all-day in­fusion once every week, going to once every two weeks in mid-June.

After reaching 160 in June, my lambda level went up to 313 in early July, 363 in late July, and an all-time high of 498 in early August. My M-spike remained stable.

I was then put on a “last-ditch” regi­men con­sist­ing of an injection of Velcade, ten 50 mg capsules of cyclo­phos­pha­mide (Cytoxan), and five 4 mg dexa­meth­a­sone tablets, all admin­istered once every week. This initially brought the lambda free light chain level down from 498 to 411, but four weeks later the numbers were only down another ten points to 401. The latest markers are not yet in.

The downside of this regi­men has been that the side effects have gotten worse each week. Most recently, my systolic blood press reading went up to a dangerously high 178, and my pulse rate was 140, twice my nor­mal level, for several hours. There’s also been fatigue, swollen ankles, loss of appetite, shortness of breath, con­sti­pa­tion and diarrhea, and the usual dexa­meth­a­sone crash.

So I’ve chosen to dis­con­tinue treat­ment. I met with my on­col­ogy team last week, and they are okay with my de­ci­sion to choose quality of life over the in­creas­ing misery of treat­ment. They already had mentioned hospice at one of my pre­vi­ous appoint­ments, although I think it’s way too early for that.

I often say that I don’t know what’s the cancer, what’s the treat­ment, what’s just being an old man, and what’s a com­bi­na­tion of all three. There may be clin­i­cal trials I could try, but, frankly, those seem like too much work with record-keeping and un­cer­tainty.

I am 31 years sober and have learned to live one day at a time and to find the joy in that day. And I don’t feel any dif­fer­en­t today than I did yesterday or last week. I’m hoping, frankly, that by stopping treat­ment I’ll feel better! At least for a while.

We live in a rural piece of the Sonoran Desert outside of Tucson, Arizona, in a double-wide manu­fac­tured home on a one and a quarter acre (tenth of a hectare) lot. Our front half is natural desert, and the back half is fenced and an oasis with gardens. Both are habitat for a wide variety of critters, and I enjoy and learn from them. Just a few weeks ago my spouse, helpmate, and best friend Kaitlin called me outside to witness Mom and Pop great horned owls teaching their two offspring how to get around in a big mesquite tree.

The joy is there for the taking if we are open to it. I read a lot, although my energy for even that is down some as a result of my last treat­ment regi­men and teary eyes. I write a bit. And I remain filled with gratitude for my life.

One day at a time.

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The quotation for today's column is from Joseph Campbell (1904-1987), an American author and academic, who said: “We cannot cure the world of sorrows, but we can choose to live in joy.”

Editors’ Note: If you are thinking about commenting on Albert’s column, please recog­nize that he and his medical team have given a great deal of thought to the treat­ment de­ci­sion he has reached. As Albert has told us: “Everyone’s reac­tion to myeloma and its treat­ment is dif­fer­en­t. I have been happy with my on­col­ogy team, which truly has listened to me and been willing to negotiate. At this point, I am not really interested in hearing about other possible treat­ment regi­mens, clin­i­cal trials, or medical groups. There comes a time when one says, simply, ‘It’s done.’” We would ap­pre­ci­ate if you would respect Albert’s wishes in any comments you make in regard to his column.