As I mentioned in my recent columns, my M-spike and serum free light chain levels have been rising over the past few months, in­di­cating I might have to start treat­ment in the near future. The reprieve from med­i­ca­tions this year had been really nice, but in the world of myeloma, it seems to be wishful thinking that my dis­ease would suddenly halt and disappear without help from the drugs avail­able to us now.

So, earlier this month, upon consultation with my doctors and my family, I decided to try a new drug com­bi­na­tion: Darzalex (dara­tu­mu­mab), Revlimid (lena­lido­mide), and dexa­meth­a­sone. My doctors are really keen on this treat­ment given the pos­i­tive results seen with it so far in clin­i­cal trials.

I am cur­rently generally healthy. Apart from the myeloma proteins, my other blood markers are nor­mal, and I am as fit as I have ever been in my sixties. I still walk a lot and spend lots of time with my young grand­chil­dren, so it seems like a good idea to try this new treat­ment now before I get sicker again.

Once we made the de­ci­sion to start treat­ment again, things moved quickly. Before starting Darzalex, my blood counts had to be good, so I had many blood tests as well as a bone marrow aspirate done.

I also had to get blood typing done because Darzalex can mask one’s blood type, and it needs to be known in case transfusions be­come nec­es­sary at some point in the future. As part of the blood typing, I needed to undergo some anti­body screen­ing for hepatitis varieties and other blood disorders. These tests turned out well, and I now have a blood bank ID number in case I need any blood transfusions in the future. I used to donate blood before I got cancer, and now know how vital these donations can be for patients.

I was informed that the first Darzalex in­fusion can cause a number of side effects, such as tiredness, nausea, diarrhea, con­sti­pa­tion, vomiting, muscle spasms, joint pain, fever, chills, dizzi­ness, cough, and shortness of breath. This is a long and rather daunting list, and for the first in­fusion special precautions are taken, in­clud­ing an 8-hour in­fusion time and the admin­istra­tion of pre-medications to deter some of the poten­tial side effects.

The pre-medications in­cluded montelukast (Singulair), an asthma med­i­cine, taken the night before and one hour prior to the in­fusion in the morning. This drug is only to be taken prior to the first Darzalex in­fusion. The night before I also took a tablet of Benadryl (di­phen­hy­dra­mine), an anti­his­ta­mine.

In the morning, one hour prior to the in­fusion, I also took 20 mg of dexa­meth­a­sone. I have no choice as to when to take the dex since it is needed to help with the in­fusion. In addi­tion, I swallowed two tablets of acetaminophen (paracetamol, Tylenol) and another of Benadryl.

As part of the new treat­ment plan, I am now taking 10 mg of Revlimid and a daily injection of Innohepp (tinzaparin) to prevent clot for­ma­tion (I have stopped taking low-dose aspirin now). I am still taking anastrozole (Arimidex), my breast cancer main­te­nance med­i­ca­tion. These dosages and drugs may be adjusted as my treat­ments go along, but that is what I am starting out with.

I was quite nervous about the first in­fusion because I didn’t exactly know what to ex­pec­t. The nursing staff in the treat­ment area was very pleasant and tried to reassure me that everything would be fine. I was settled into a reclining chair and a warm blanket was put over me. A needle was clamped into the back of my right hand and tubing taped to my arm. The tubes ran up onto an IV pole where the bag of Darzalex and bags of saline were hanging.

For the first long in­fusion, there were 1,100 milliliters (1.1 liters) of fluid in the Darzalex bag. Needless to say, I got quite hydrated during this long day.

For the first two to three hours of the in­fusion, I did not feel very well. At one point, I thought I was getting a fever. A nurse took my tem­per­a­ture, but all was nor­mal. The in­fusion ran for 50 ml for the first hour, 100 ml for the second hour, 150 ml for the third hour, and then 200 ml per hour for the next four hours. There were rinses with saline before and after the Darzalex in­fusion.

It was a long day, but I got up during the in­fusion, unplugged the IV pole from the wall, and walked around sometimes.

Our daughters came in to visit me, and my husband Dilip sat with me too. I even had a friend visit after they learned that I was receiving treat­ment. The nurses were helpful and cheerful too. Volunteers came in with their trolley, serving beverages and cookies. When I had some quiet time, I listened to music on my iPod and tried to memorize a poem ("The Night Before Christmas").

I didn’t have any side effects that were serious enough to stop the in­fusion or give me addi­tional drugs. I was very thankful for that. I felt much better by the afternoon, and I think that the effects of the drugs I had taken in the morning (except for the dex) were wearing off at that point.

We left the cancer center late in the afternoon. I was quite tired and felt washed out, but we walked back to our vehicle and got home. I wasn’t very hungry and went to bed early. I took a sleeping aid to coun­ter­act the dex, and also another Benadryl, since my nose was stuffy. I slept fairly well that night, con­sidering all that had hap­pened in the pre­vi­ous two days.

The next couple of days, I was coughing and sneezing quite a bit and took more Benadryl. I also noticed that I was still over hydrated. Since I have taken Revlimid and dex before, I was able to identify the side effects asso­ci­ated with them. I took sleeping pills for three nights, which is more than I would have done in the past. I thought that I might have gastro­in­tes­ti­nal problems from the Revlimid, and took some polyethylene glycol (Miralax), but it wasn’t needed. In addi­tion, I am icing the spot where I am getting the daily Innohep injection to prevent bruising. Fortunately, the injections into the abdominal area are not painful.

The Darzalex in­fusion along with the weekly dex was admin­istered on Wednesday, and by the weekend, I felt more nor­mal again.

All in all, things went better than ex­pec­ted with the first Darzalex in­fusion. I hope it con­tinues that way with the sub­se­quent in­fusions.

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The quotation for this month is from C.S. Lewis (1898 - 1963), an Irish-born scholar and novelist, who said: "You are never too old to set another goal or to dream a new dream."

And to all the Beacon's Canadian readers: Happy Thanksgiving!