Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
Several months have gone by since I last wrote about my current myeloma treatment regimen consisting of Darzalex (daratumumab), Revlimid (lenalidomide), and dexamethasone.
As you may remember from my last treatment update, my Darzalex infusions were scheduled to be administered once a week for eight treatments, then once every two weeks for another eight sessions, and then once every four weeks thereafter. I am now on the once every four-week schedule.
Overall, I’m happy to report that I have managed to live a fairly normal life, up until the point when the coronavirus pandemic, or COVID-19, arrived in Canada (more on that later in this column).
Since my last update in November, my treatments with Darzalex, Revlimid, and dex have continued as planned.
I have noticed that I tend to be quite tired after the Darzalex infusion, so I don’t drive myself home afterwards even though it is only a 20-minute commute. For the same reason, I don’t schedule anything else on the infusion day.
The weekly dexamethasone continues to cause me to become restless and too talkative, and towards the end of the Revlimid cycle, I am more likely to catch infections and get cramping in my legs and hands.
Some slight modifications have been made to my supporting medications to simplify my life.
Because I am taking two drugs that could cause blood clotting – Revlimid for my multiple myeloma, and anastrozole (Arimidex) as maintenance therapy for breast cancer – my doctor thought it would be a good idea for me to take the anti-clotting medication Eliquis (apixaban), which comes in pill form, twice daily, rather than a daily injection of Innohep (tinzaparin), a different anti-clotting medication. Of course I like taking the pills better than having a daily injection.
Since I continued to have problems with my gastrointestinal tract, despite taking Imodium (loperamide), my doctor prescribed me the bile acid sequestrant colestipol (Colestid), which comes in the form of a large pill. That helped a lot in normalizing me again, and I felt much better soon after I started to take that drug. However, after a few weeks, the Colestid was discontinued because it was no longer available to the pharmacy, and my pharmacist switched me to Olestyr (Questran, cholestyramine for oral suspension). The Olestyr is mixed with a liquid such as water and taken three hours away from other prescription drugs. Since I now take drugs in the morning and the evening, I take the Olestyr mid-day.
As I pointed out earlier, things did change a bit when COVID-19 arrived in Canada. All of a sudden, we were in a quarantine sort of mode. Of course, my family and I are trying to avoid getting ill with COVID-19. We are practicing keeping a safe distance from others, and if any of us become sick with an upper respiratory infection, we stay home for two weeks.
In addition, I encountered a glitch when I had my latest Darzalex infusion in March. I had caught a cold at the beginning of March, and given the current cautious times, I isolated myself for two weeks. That meant that I had to postpone my appointment with the myeloma specialist preceding my Darzalex infusion, and the infusion itself, at the cancer center to the following week.
I still had a slight cough at my doctor’s appointment and, as a precaution, was tested for COVID-19. After waiting anxiously for the results, I found out that the results were negative for COVID-19, but positive for cold viruses. As a result, my treatment, which was scheduled for the end of the week, could be administered as planned.
Normally, I have a blood panel and a 24-hour urine test done before my Darzalex infusion. But when I asked at the appointment if I needed to get my blood panel done before my treatment, I was told that they are cutting back on blood testing and that my last results were good enough for me to take the Darzalex infusion.
For the infusion itself, I was treated in an area of isolation. A curtain was drawn around the treatment area, and the nurses working with me were in full masks, gloves, and gowns. It was a bit unnerving, but I got through the infusion just fine.
As for the efficacy of the Darzalex, Revlimid, and dex regimen, I am very pleased with the results. At my latest blood draw, my monoclonal protein came in under 0.1 g/dL (1.0 g/L), and the kappa and lambda values as well as the ratio of the two were close to normal ranges. My other blood markers, such as the neutrophils and platelets, are fine as well.
Given these positive results, you can probably imagine how grateful I am that my treatments are being continued during this time of COVID-19 precautionary measures.
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The quotation for this month is from Albert Einstein (1879 – 1955), who said: "The measure of intelligence is the ability to change."
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: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Starting Treatment With Darzalex
- Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: How I Am Dealing With COVID‑19 As A Multiple Myeloma Patient
Thanks for the column. I find your treatment details very interesting, and many are relevant to me.
Hope you continue to do so well.
David
Nancy,
I also am on a Darzalex regimen.
Like you, I was very groggy after my Darzalex infusions. I realized the Benadryl (diphenhydramine) was really knocking me out. I was granted a request to cut the dosage in half, which made a big difference.
As for the dex, I receive it in liquid form, once a month, during my infusion. It does not disturb my sleep or create any other noticeable side effect.
Best of luck with your (our) treatment!
Thanks for the comments, David and Pepperink!
I think that since this is still a relatively new treatment regimen for me, there is an element of uncertainty for me about the medications. I do feel groggy from the Benadryl (diphenhydramine) for a few hours, and then more active from the dexamethasone, which is an odd juxtaposition! On the treatment day, I take a total of nine different drugs: anastrozole (Arimidex), Eliquis (apixaban), cholestyramine, dexamethasone, Benadryl, Tylenol (acetaminophen / paracetamol), Darzalex, Revlimid, and trazadone. I really feel like a patient that day and just rest as much as I can! But most of the time I feel much better and I know that this regimen is helping me a lot!
Best wishes for your treatments also!
Hi Nancy! Thanks for the update. I am so happy that you are doing well! Given these trying times, we all have had to make some adjustments.
Thanks, Ron. The hospitals here have been emptied out of many patients to make space for an expected influx of COVID-19 patients who need intensive care. The cancer centre is still open though. I feel fortunate that I have come this far along with my Darzalex, Revlimid, and dex treatment already and don't need to get a treatment more than once every four weeks.
Hi Nancy!
I'm so glad to hear that you are doing so well! Below 0.1 g/dL for your M-protein? That is awesome! And that is with a delay of treatment for your cold! What a fantastic way to begin your Easter holiday!
Stay well and keep up the good social distancing efforts!
Tabitha
Glad things are going well! Take care, Susan
Thanks, Tabitha and Susan! When I look back on the fact that I have relapsed about four times in ten years, I am really happy that the Darzalex is working so well along with the Revlimid. Previous to this, I was just on Revlimid plus dex for relapses, and my M-spike diminished much more slowly. This is the first time I have taken a three-drug regimen.
Hi Nancy.
What an informative column today. We really appreciate the details of your treatments as well as the side effects. My husband has a similar treatment regimen. but he is on once-a-month Empliciti (elotuzumab) rather than Darzalex (daratumumab). Like you, he has also experienced leg cramps. He has tried to mitigate those with a glass of real tonic water in the afternoon.
We are also impressed with the precautions your medical center has taken during this COVID-19 outbreak. Unfortunately, the small cancer center my husband goes to did not take precautions last month. We are hoping that they do during his next visit. Because of the COVID-19 outbreak, his routine six-month checkup at a major cancer center was postponed until the fall. His oncologist said that in this situation the risks of getting the virus were much worse than postponing his checkup.
Really glad your treatment regimen is going well and that your M-spike is so low.
Thanks Patty. It is also nice to hear of your husband's treatments. I hope that postponing the checkup will not be a problem. As has often been said, "Myeloma is a marathon, not a sprint," and if he is doing well, probably his doctor knows how to handle this. I am getting telephone consultations with my family doctor, though, to get prescriptions renewed. As a long-time patient, I am somewhat resigned to being self-isolated anyways, but do miss the rest of the family very much. We walk outdoors every day. It is still winter here, and it is not crowded outside. I do think that things will be better once we get a vaccine and it is known what treatments to use to prevent COVID-19 from going to the worst case scenario.
Hi Nancy. Thanks again for your update. I am about halfway through the bi-weekly cycle of the same treatment. Certainly these are trying times with COVID-19. My doctor called me this week instead of having me drive down to the cancer clinic for my monthly appointment. I appreciated that. I haven't heard of skipping blood tests though. I would think they would want to look at your immunity before each treatment. Glad to hear everything is working well for you. I am doing well also. Stay safe!
You too, Colin, stay safe! I am also getting a phone consultation with my oncologist this month, but did go into the lab to get my monthly blood tests done. Hopefully, then I don't need to get a CBC done in another few days before a treatment.
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