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Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone

By: Nancy Shamanna; Published: November 14, 2019 @ 5:57 pm | Comments Disabled

As you may remember from my pre­vi­ous column [1], I started treat­ment with Darzalex, Revlimid, and dexa­meth­a­sone in early Octo­ber.

By now, I have re­ceived six weekly Darzalex (dara­tu­mu­mab) in­fusions, and quite a bit has hap­pened as I adjust to being on a new regi­men.

After the first in­fusion, I had a mild cough that turned into quite a deep, hacking cough. I could hardly sleep for a week. It didn’t appear to be a "productive" cough, so I took Benadryl (di­phen­hy­dra­mine) and cough med­i­cines and sat upright a lot at night to deter it. I don’t know whether the cough was due to a virus or Darzalex, or a bit of both. It was cer­tainly a worse cough than I nor­mally have. Thankfully, it did clear up within 10 days.

Since then I have also re­ceived an annual flu shot. I had timed the shot to be admin­istered at the end of my first Revlimid treat­ment cycle so that my blood count would have a chance to bounce back a bit from treat­ment. My neu­tro­phils were low after two weeks of Revlimid, but after that they recovered to a nor­mal range. To be on the safe side, though, I am avoiding going out in crowds right now.

The first Darzalex in­fusion took over 8 hours, the second one was for 5.5 hours, and then the third and fourth sessions were for 3.5 hours. These shorter in­fusion times made the ex­peri­ence more toler­able than the longer sessions, since sitting in an in­fusion chair, even if it is a comfortable reclining one, is a bit confining. At the end of the first cycle of four treat­ments, I was doing quite well. My doctor there­fore decided to put me onto an accelerated, shorter in­fusion of 90 min­utes. I have been on it since the fifth treat­ment, and I seem to be toler­at­ing it well.

Overall, I’m not experiencing any major side effects with Darzalex, or at least they don't seem very noticeable to me. I am a bit tired at times and take naps, so perhaps the com­bi­na­tion of all the drugs, in­clud­ing Darzalex, is causing that.

At the same time, I’m dealing with some of the same side effects that I ex­peri­enced before when I took the Revlimid and dexa­meth­a­sone in com­bi­na­tion.

I take 20 mg of dexa­meth­a­sone one hour ahead of the Darzalex in­fusion, along with 50 mg of Benadryl, and 500 mg of Tylenol (aceta­min­o­phen, paracetamol). The dex has the effect of keeping me awake at night, and probably making me too talkative and distracted. I there­fore don’t drive for two days after taking it, and I also resort to a sleep aid, trazodone, for two to three days. However, com­pared to the last time I took dex in com­bi­na­tion with just Revlimid, I feel less energetic over­all.

Immediately after I started treat­ment, my scalp started to itch, which hap­pened when I pre­vi­ously was on Revlimid and dex. I resumed using a dandruff shampoo that has 1% pyrithione zinc as an active ingredient. That helped before, and it is work­ing again this time.

I also am dealing once again with some diarrhea and have tried to modify my diet so as not to in­clude rich and fatty foods, such as chocolate and meats. Yet I still have had to resort to taking Imodium (loperamide) at times to slow the digestive tract down. Needless to say, this is a bit unnerving, but I suppose I will get used to it once again.

Unfortunately, I also am once again experiencing cramps in my shins and hands. I stretch these areas and take Tylenol, but the cramps never­the­less can be quite painful.

All this seems worth it given the results I got back after my first four treat­ments on Darzalex, Revlimid, and dex. As you might recall, I stopped taking Revlimid and dex in Jan­u­ary­ of this year. At that time, my blood counts were quite good, and my M-spike was low. After I dis­con­tinued the drugs, my myeloma markers climbed again until my doctor and I decided I needed to start treat­ment again. After only four treat­ments of Darzalex, Revlimid, and dex, the myeloma markers are down again to where they were in Jan­u­ary­ (there was some confusion about my lab results at first since the M-spike was not reported, but it turned out the result was just late to arrive).

It seems that the addi­tion of Darzalex to Revlimid plus dexa­meth­a­sone has really helped a lot. Obviously, we are very happy with the results, and hopefully the next four treat­ments will show further im­prove­ments in the results.

(We do not know yet what the impact of the new treat­ment regi­men has been on the results of my 24-hour urine test or on my plasma cell per­cent­age, but we hope im­prove­ment in those results will occur as well.)

The only real downside asso­ci­ated with the new treat­ment regi­men is that the weekly treat­ments have been keeping me and my husband quite busy, since I also need a CBC blood test a day or two ahead of every in­fusion. That, along with other appoint­ments, and waiting at the pharmacy at the cancer center for my prescriptions, takes up a lot of time. In fact, receiving treat­ment almost feels like having a part-time job!

In De­cem­ber, how­ever, my treat­ments de­crease to once every two weeks for eight treat­ments, and monthly there­after, so I will have more time to do other things again.

Overall, the new treat­ment regi­men has been a good ex­peri­ence for me with excellent results. What more could I ask for?

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The quotation for this month is from Ovid (43 BC – 17/18 AD), a Roman poet, who said: "Let others praise ancient times; I am glad I was born in these."

Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here [2].

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .


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URL to article: https://myelomabeacon.org/headline/2019/11/14/northern-lights-my-first-six-weeks-on-darzalex-revlimid-dexamethasone/

URLs in this post:

[1] column: https://myelomabeacon.org/headline/2019/10/12/northern-lights-starting-treatment-with-darzalex/

[2] here: https://myelomabeacon.org/author/nancy-shamanna/

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