Northern Lights: Starting Treatment With Darzalex
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!
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: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: Coping With Treatment Again
- Northern Lights: Celebrating A Decade Since Diagnosis
Nancy, I'm so sorry that you've had to start treatment again. I'm glad, however, that you are on Darzalex. We tried at one point to get Dan on the same treatment regimen, but it wasn't approved at the time.
It is a very long infusion day, but I'm thrilled to hear that you didn't experience any serious side effects. I thought it was interesting how similar your protocol is to Dan's Empliciti (elotuzumab) protocol, especially when it comes to the supportive medications. Dan is also on Revlimid and dexamethasone pills, and he has a higher amount of dex infused on treatment day. He also takes the Benadryl and Tylenol (acetaminophen, paracetamol) with the infusion, but he has twice daily Lovenox (enoxaparin) injections for his blood thinners since the Revlimid gave him blood clots with his initial induction therapy. I'm very glad to know that your injections aren't very painful. I feel so bad about giving him those stomach shots! I will also ask him about using the ice to keep bruising at a minimum.
I love your positivity and your strength! You are such a trooper! Hang in there. I'm sending lots of well wishes your way and I am rooting for this treatment to be just what you to need to get back in remission real soon! Hugs!
Thanks Tabitha! So far I am adjusting to the Darzalex infusions and the other drugs without too much problem. It's interesting that Empliciti (elozutumumab) is also administered by infusion. It is another monoclonal antibody.
To ice the Lovenox injections, you could try partially filling a small container with water and freezing it. Then place a clean facecloth over the injection site and put the 'ice pack' on that, for about ten minutes. I still get some bruising but I think it helps. And we are rotating the injections too so as to protect the area.
I am just taking my 20 mg of dexamethasone by pills, as I had before, one hour before the weekly Darzalex injection. I will still take them weekly even when the injections are given less frequently, after about 7 more seasions!
Take good care of yourselves.
That is a very long infusion. I'm glad there were no issues. I'm a worry wort, so I'd be anxious the whole time. I hope the infusions get shorter. I really hate dex and it knocks me out for at least a day (I won't drive on dex, at least the first day and second).
I'm just out of a remission and will start back up with treatment in the next few months. My kappa is at 44.7 right now so out of normal high. Plus my ratio is up too. My doctor is quite conservative as to when to start.
I hope the treatment knocks out the myeloma cells and you're back in remission soon.
Kind thoughts your way from California.
Dear Nancy, I was really sorry to hear that you have had to return to active treatment. It sounds like a tough regimen and thanks for taking the time to describe it so well. I think it’s very helpful for all the readers to hear what your treatment is and the medicines which you are taking to reduce your side effects. You sound so brave and positive about something which is so grim. I send you all my love and best wishes for a quick return to remission.
Nancy - So sorry that you have to resume treatments, but at least you are on a regimen that has demonstrated success in many patients. I was surprised to see how long your infusion time is. I hope you will not have to receive infusions too often. The Beacon recently had an article on Darzalex (daratumumab) and its affect on uninvolved (non-myeloma) immunoglobulin levels. Did you have a chance to read it? “Darzalex May Affect Different Uninvolved Immunoglobulins Differently,” by Maike Haehle. The reason why I bring this up is my husband has been on Empliciti (elotuzumab) for three years and he requires immunoglobulin infusions once a month to help his immune system. I realize that these are two different monoclonal antibodies, and I have not seen any research on Empliciti indicating a similar affect. However, my husband does have this situation with his immune system.
I know you have been through so much and you are an inspiration to all of us on this myeloma journey. Thank you for continuing to share your situation, treatments, and experiences.
Nancy, so sorry you had to start treatment again, but I am glad that, after the first side effects have seem to have subsided, you are doing pretty well. I pray it does what it's supposed to! I'm sure I have read about the blood type being masked by the Darzalex, but had forgotten and found this quite interesting. These drugs are incredibly powerful! But we need them to combat the incredibly powerful multiple myeloma. I pray you do well. Thanks so much for your report.
Dear All, Happy Canadian Thanksgiving! I have so many blessings and am grateful for all of the positive support in my life too! I appreciate everyone's kind concern.
Christina, I hope you can stay in remission a while longer!
Marjorie, I did think that writing up this column would help to inform readers of what to expect when starting on Darzalex, and "de-mystify" the experience a bit. I am over the worst of the start up now.
Patty, that is interesting that both your husband and Tabitha's husband are taking Empliciti. It's an interesting scientific world of monoclonal antibodies. I read Maike's article with interest and could check on that once I get some results back in another two weeks. Maike is also my editor at The Beacon and I am most grateful for all of her help!
Susan, I think that having my blood typing masked really surprised me the most in the start up on Darzalex! I have an O-positive blood type, and thus I try to have a positive outlook (ha ha)!
Nancy,
Thank you for the detailed account of your first Darzalex infusion. I see myself eventually following the same protocol. I have been on Velcade, Revlimid, and dexamethasonne (VRD) for a long time, and my oncologist wants to milk that protocol for as long s possible. We discussed that a combination featuring Darzalex would be my likely next treatment protocol. Your detailed account really helps in knowing what to expect.
You are welcome, Ron! This whole procedure seemed very complex to me, and I wrote it up as soon as I could for the column. I was actually dreading the initial treatment, but it went off OK. I think that of all the readers who might be interested in this, mostly they would be at the Beacon! When I try to explain this to friends and family, I get a bit bogged down with the details and it could be 'too much information' for some.
One thing I could mention is that I could get Darzalex either with Revlimid or with Velcade. I have also been on both of those drugs. In my case, because I am not refractory to Revlimid, my doctors prefer it. I went off of Revlimid and dex last January, and then I relapsed to a point where the Darzelex, Revlimid, and dex treatment seemed necessary. My original oncologist was worried that I might really relapse badly, but fortunately that did not happen. (I now have new, to me, oncologists becuase my previous doctor retired and, unfortunately, passed away a month after his retiredment due to a heart attack. That seemed so unfair since he had spent his whole career helping others and did not get a chance for a nice retirement!)
Hi Nancy. Thank-you so much for this account. I recently contacted my specialist to discuss my rising M-spike. So, as it turns out, I am going on this same regimen starting next month. I also thought I should go on it now rather than wait until I display myeloma-related symptoms. I pray this treatment works wonders for you and me and doesn't give us too many quality-of-life issues. I appreciate your account very much.
Nancy, sorry to hear that you have had to restart treatment.
Thanks Bond007. Of course I was disappointed to need to start treatment again, but I hope that this new drug will help me out a lot with the myeloma.
Colin, we will have to compare notes on the new Darzalex treatment. I think that many patients are and will be trying it, along with the other drugs.
Nancy, thank you for sharing your story. After a period of stability, my numbers are heading up, and I'm thinking I will soon be in similar shoes to yours, so I read your column very intently. It is great that you are handling the situation so well, and I certainly hope things go well for you. This is the best of what the Beacon has to offer – personal stories that have meaning and give hope, and that also help us all to have ideas about what may lie ahead for all of us. My appointment is next week, so we'll see how that goes!
I am starting Darzalex in 2 weeks. I was on maintenance therapy of Revlimid 10 mg after a stem cell transplant in August of 2018. My M-spike and other markers are rising each month. They now put me on Revlimid 25 mg and dexamethasone 40 mg once a week till the infusion, which I’m so nervous about. I also gave Sjögren’s syndrome. I worried this would make that worse, but the doctor said it may help. I hope all the side effects of all the drugs will make it worth it. I am discouraged that I have to do this so soon after stem cell.
Anton, thanks so much for your kinds words. The Beacon has been a source of support for me now since I started writing here in 2012. If you or others are interested in additional first-hand information related to Darzalex, I would recommend Pepperink's forum thread where he posts regularly about his treatment with Darzalex.
Bonnie, I am wishing you luck with the increased dose of Revlimid plus dex, ahead of the Darzalex. I didn't find taking the Darzalex infusion too awful, although I was carefully monitored and my dear family was there to help me too. Now I am adjusting again to being on medications, plus the treatments, which is tiring.
Dear Nancy,
I live in Ontario, Canada, so a happy belated Thanksgiving to you.
I am so very thankful to you for writing with such detail on your experience with Darzalex. I'm also very happy to hear that you're finding the treatment manageable with few side effects.
After being in remission after my stem cell transplant, my M-protein has started to spike and my free light chain is also flagged. I have been reading your column for some time now, as my journey with myeloma has been similar to yours, and also we are both receiving treatment in Canada, which sometimes is a little different from the U.S. My appointment with oncology is this coming Monday, and my M-spike has jumped another two levels, so I am envisioning what might be ahead for me. You have been so helpful with explaining everything so that I can understand what I might have ahead for me, treatment-wise, here in Canada. My oncologist has told me that once I start treatment again I will be on treatment for the rest of my life. I also had a pulmonary embolism during my stem cell transplant, so I will be on blood thinners during my treatment.
You sound so positive, and this is what is so encouraging. Personal stories that give all of us hope as we face this journey of myeloma. I send you love and all the best in getting back into remission.
God Bless,
Diana
Thanks Diana, and I am wishing you the best with your oncology appointment next week.
I like to explain things in my column, since I do get quite nervous myself about the new and unknown (to me) treatments and procedures.
I am positive, since I am truly thankful to have passed my 11th Thanksgiving since being diagnosed with myeloma and now am on a treatment that may help me go on for more years too! I have my 'eyes on the prize'.
Thank you very much for sharing your experience. It’s so helpful to hear others’ experiences. I’ve been on Darzalex for over nine months. This is my third round of myeloma treatment. The others were in 2009 and 2013. With Darzalex, my M-spike and free light chain numbers responded quickly. Now I receive Darzalex every 4 weeks as maintenance. I also take dex the day after the Darzalex infusion. For the first few months, I also received dex as part of the infusion prep. Then the dex started affecting my sleep so much that my doctor cut it to just the post-infusion day. All this has been an involved journey. I feel very grateful for the research advances that have greatly widened the treatment options for us.
Well said, Cherry! I also feel grateful for the research advances that give me hope for a longer time with a low level of myeloma or a remission. My myeloma history also started in 2009, I relapsed in 2014, had a secondary cancer so went off of myeloma meds, and then went back last year, went off again earlier this year...I get confused just thinking about it sometimes! I am looking forward to getting through the weekly infusions this fall, then onto once every two weeks, and then to once a month Darzalex. I have some side effects right now but am managing alright for the most part. Best wishes with your treatments!
Thank you so much. This site is so comforting. I am so discouraged as I now have a bladder infection so I’m sure they will cancel my first infusion. I’ll find out Monday when I call, as it will take a few days to culture and decide on an antibiotic. The last time I took Revlimid and dex, I also got bladder infections. I also suffer from extreme dry eye and blurriness. I think the dex drops my white cell and other numbers so low that I am prone to infection. My oncologist seems to always say I should see my primary care physician or urologist. I get frustrated as I feel these are a direct result of the medications he gives me.
Nancy, I appreciate your sharing your story. I will be starting a Darzalex, Velcade, and dex treatment regimen soon and find your story helpful.
Good morning. Bonnie and Kim. I am glad you found my account to be helpful. As patients with a rare blood disease, we are faced with choices that many other people would find difficult to understand! So I thought that if I wrote this up it would be cathartic for me and also explanatory to others.
Bonnie, I need to get a CBC done before every treatment, and last week I found out that my neutrophils are below normal levels. Thus I am keeping a low profile and not going out in crowds. I am getting a flu shot this week to avoid infections, too. I waited until the end of the Revlimid cycle so that my blood counts may have bounced back a bit towards normal. I know that urinary tract infections (UTI's) can be a real problem. It might be helpful if your PCP had access to your oncologist's medical notes so that he or she can understand this problem of frequent infections in the context of your having low blood cell counts due to treatment of your myeloma.
Honestly I can’t thank you enough, I wish I could reach out and hug you! I am sitting here waiting on a return call from my oncologist, so I’m hoping he will address it rather than sending me to my PCP. I really don’t understand going to the PCP when it’s probably caused by the Revlimid and dex. I’ve been drinking my weight in water and all symptoms seem to have cleared. Maybe I was just dehydrated. I am so discouraged as it seems I get the weirdest things. I also have blurred vision that’s driving me nuts. I did get the flu shot. I read, however, that Darzalex treatments can make inoculations less effective. I hope that’s not the case! I’m sure it will be on for my first infusion this Wednesday. I’ll post and let you know how it goes. You gave me peace and calmed my nerves reading your account, so, again, thanks so much!
Thanks Bonnie! I guess that, because I am a long-time patient, I have had many instances of seeking medical attention for symptoms, just as you have done. I can only suggest doing the same in regard to your blurry vision.
I have had my third treatment with Darzalex, Revlimid, and dex. My side effects really don’t start till 4 days after my Darzalex infusion and consist of extreme tiredness, headache, a shaky feeling, and just kind of a flu-like feeling. Plus I have had a yeast infection I can’t seem to get rid of and my potassium levels have dropped (which I am trying to bring up by diet first). The day before treatment I seem to start feeling better to start it all over again. I'm anxious to talk to my doctor face-to-face in two weeks.
Thank you for your update.