Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
As you may remember from my previous column, 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.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Starting Treatment With Darzalex
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: Coping With Treatment Again
Nancy, thank you so much for updating us on your Darzalex treatment regimen is going. I'm thrilled that you are tolerating the regimen well and it is making a positive impact on your myeloma!
I know what you mean about treatment being like a part-time job! We feel the same way. Here's to your continued good response to this treatment. Hopefully, you'll be done with it soon and things will be back to normal before you know it!
Wishing you the best!
Dear Nancy, thanks very much indeed for continuing to describe all that is happening to you and how you are coping with the treatment regimen. It sounds tough and yet it also sounds as if you are coping. It’s great news that it seems to be working, and hopefully the myeloma will return to hibernation soon. With very best wishes to you.
Thanks for the update, Bonnie! I hope that the infection you have will clear up, and that you will start to feel better soon. One thing I realized I could do at each treatment was to ask for the results of my CBC counts from draws that I have a day or two ahead of time. On those is any indication of whether the neutrophils or platelets are low, for example. The nurses give me my results (a paper copy) if I ask for them.
Thanks, Tabitha and Marjorie, for your kind concern! I would have had to be on a drug combination such as Revlimid plus dex anyways, as I was last year, and it seems that the Darzalex is speeding up the response to treatment. Not since I was originally diagnosed, and taking Velcade plus dex brought my M-spike down from 5.8 g/dL (58 g/l) to about 0.3-0.4 g/dL (3-4 g/l), over the course of one autumn, have I had such a quick response. So we are hopeful that this will be really helpful for me.
That really sounds good. The treatment times are so long. That's one of the hard things about the infusions. It seems you are doing really quite well, and I appreciate the details of how it has been for you and what you have done to cope. I hope it continues so well and you're back in remission soon.
Nancy,
This is one of those thankful moments. All morning something has nudged me to open up the Myeloma Beacon. After just one treatment of Darzalex, Kyprolis, and dex, I was ready to give up. The emotional side effects, fatigue, nausea, sleepless nights have simply weighed in. I have been in tears thinking I can't go through this again. I had been on Revlimid, Velcade, and dex, but I couldn't tolerate the regimen. My oncologist decided to switch me to Darzalex regimen. Your column suggests to me: "Hang in there, it will get better!".
Thank you for sharing your experience.
Christina, thanks! I am looking forward to when I get onto treatments every two weeks, for that will be less time consuming, but it's really OK right now. I hope you are well.
Pam, I would not give up. If the Darzalex works for you, that could be a really positive thing. The dosage of Revlimid I am taking is 10 mg, 21 days out of 28. The third week is of course the most difficult, and I am glad to get a break every fourth week. I have been down this road before so maybe I am just used to that. This is the first time, though, that I have been on triplet therapy. I haven't tried Kyprolis either, so don't know anything about that drug. Good luck with everything!
That sounds like a great response after just four weeks! Crazy as it sounds, the one thing that has worked for me when nothing else I tried worked to stop cramps was taking half a teaspoon of baking soda mixed in water once a day. You can go up to one teaspon if you need it. I took it to help with heartburn and found out I no longer have cramps at night as soon as I started taking it. My cramps were very painful.
Jan
So glad to hear you are responding well so far! Hoping and praying it stays that way!
Well written article, Nancy! This will help many patients who will be undergoing this treatment. Yes, those early weeks are very busy. I’m on monthly now and it’s easier. I’m glad your results are so positive. You are an inspiration to us all. Gentle hugs.
Thanks for the tip about taking baking soda in water for Revlimid cramps, Jan. Those cramps seem to be muscle spasms that are difficult to break.
Susan M. and Susan W., thank you for your well wishes! Since this is a newer treatment regimen, I am glad we are comparing notes on how it is working out.
There are a number of discussions in the Beacon's multiple myeloma forum about muscle cramps, how to treat them when they're occurring, and what to do to avoid them. Just this one discussion thread, for example, has almost 50 posts on the subject.
Nancy, for the diarrhea, have you tried cholestyramine or colestipol, as they bind the bile acids and can help reduce diarrhea [related Beacon news article, column, and forum discussion]. I would then take Imodium before going out and that would work for 5-6 hours at least.
Thanks, Myeloma Beacon Staff, for the link. I read through it all. Some patients have terrible cramping! I am going to stretch my shins in particular and try tonic water to prevent cramping. Hope it works! Also, I will try to stay active and not sit for too long at a time.
Thanks again Nancy. This is very lovely to read. I start my first treatment of Darzalex, Revlimid, and dex tomorrow morning. They are going to split the first infusion over two days. I have been in touch with the cancer pharmacist and have everything in play. No matter how much I have read and prepared, I am still anxious. So thanks again for your update.
You are welcome, Colin. I hope that the Darzalex infusions go well for you. I have had six of them now! Take good care of yourself too. I have found that the supportive medications have side effects that I also have to juggle sometimes.
Nancy,
Thanks for the detailed update. I am doing weekly treatment but with Velcade, Revlimid, and dex. I too have a CBC, but it is done at the infusion center, which has their own lab. I go in at 3:30 p.m., have my blood drawn, the test results come back in less than 30 minutes, and I get my Velcade shot around 4:00 p.m. It's unfortunate that you have to go for your CBC on a different day as that's a lot less convenient.
Hi Ron. In theory I could get my CBC done right before the infusion, since I go to the lab at the cancer center. However, I have been asked to go in ahead of time. I think that the reason for that is that if something was wrong with the tests and I could not have the treatment, they could not call up another person immediately to take my place there. The treatment centre is full, and I am assigned a chair. This is for the best efficiency of the center.
Hi Nancy, my two-day first treatment went very well with no reactions. I did develop a bout of hiccups that occurred every 20 seconds or so and went on for hours after dinner last night. I will be phoning the cancer pharmacist this morning to quell that. All in all, everything went great, and I am grateful for the education you provided ahead of time. Cheers.
That's great, Colin. I guess that since I was a science teacher at one point many years ago I still like science education. Hope the weekly treatments go well also.
Bond007, we talked about the medications that bind bile acids with my oncologist, but decided to first try diet (reduction in fatty foods) and just use Imodium for now. I think that the third week on Revlimid is the worst for side effects, so I have to take that into account also.
Nancy,
Thank you for your column. I am very glad to hear that the new treatment is working and hope that the side effects diminish. Your report is encouraging to hear. After years of stability, my myeloma markers have started going up and down like a yoyo, and the option or question of treatment is definitely in the air. Your experience is encouraging. You are facing the accompanying difficulties with grace and generosity. Thank you.
Thanks, Susan, for your kind words! I feel it is good to share our experiences, and I hope you find a treatment that puts you back into stability of the disease. I am pleasantly surprised that I feel really well right now, after 9 treatments of Darzalex, Revlimid, and dex. Admittedly, I am working around side effects, but the general effect is that I feel better than I did before the treatments. Best wishes to you!
Hi Nancy,
I started on Darzalex, Revlimid, and dexamethasone at the same time as you and have had a very similar set of experiences as the ones you describe. The main difference is the effects on our digestive tract. I have found that cramping is the most painful side effect to date, especially in my feet. On the recommendation of a fellow patient and with an okay from my doctor, I have been having a glass of tonic water (sugar free for me) every evening and it has been quite helpful.
I have started the once-every-two-weeks schedule now. Freeing up a day from infusion was nice, though I found that the side effects I’m experiencing appear to be Revlimid-dex related, so it isn’t a drug holiday.
My M-spike has dropped nicely already, so we’re very pleased with that result, hoping to get it down to full remission. A good early result has strengthened my emotional resolve to put the inconveniences of treatment into perspective.
We can do this.
Hi Susan - Thanks for also sharing your experiences with this regimen. Having two weeks between visits to the treatment center was nice, and I am getting caught up on some things at home! As far as the cramping, I have tried tonic water and sugar free Gatorade too. I'm also stretching. I don't like the cramps so I am trying to be preventative. My digestive tract is suffering too, but I will talk with my oncologist again about that. Having a lower M-spike makes this worthwhile, I agree. Good luck with everything!
It was with great interest that I’v read your article about how you've reacted and how your body handled the Darzalex, Revlimid and dexamethasone. I’m thankful for all the detailed information as I will be at the hospital this coming Wednesday to get the schedule for exactly the same treatments. I live in Denmark and I am 75 years old. I was first diagnosed with multiple myeloma in the spring of 2009 and have had two stem cell transplants, the last one in August of 2014.
Nancy, I hope your continued treatment will make life easier and that you’ll feel better as time goes by.
Margaretha, I am glad you got some information not only from my last two columns, but also from all of the comments! I am learning as I go, as I think we all are, since Darzalex is a relatively new type of drug for myeloma patients. Good luck on the treatments, and I hope that you get good results. I found the first nine treatments in a row to be a busy time, but now hopefully the trips back and forth for medical appointments, blood work, and treatments will be lessened.
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