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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/
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[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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