Myeloma Dispatches: Lost Days
In February, I endured a record run of “lost days.”
If you are a cancer patient, you know what a lost day is. It is a day you feel groggy, unfocused, and you sleep a lot.
I can’t accomplish anything on a lost day. Really, I can’t remember many details of a lost day. This phenomenon could be due to a medical procedure, the myeloma treatments I receive, or even trauma.
For four months, I would experience a lost day every Monday. This is the day I receive Darzalex (daratumumab) plus Velcade (bortezomib) and dexamethasone (Decadron).
The Darzalex-based treatment regimen has worked really well for me. When we began this new protocol, I was severely anemic, low in platelets, and immunocompromised. I was ill. Yet, after just six weeks on the new regimen, all my symptoms disappeared.
The primary downside to Darzalex is that your body can mount a powerful inflammatory response with the first dose, and sometimes later doses as well. This reaction occurs because the immune system initially perceives Darzalex as a potential threat, and the inflammatory response is the body's way of trying to protect itself.
Like many others, I experienced an infusion reaction with the first dose of Darzalex: fever, chills, and increased sedation. The good news is that my body has adapted, and I haven’t had a reaction since.
So what is my complaint? Here is a drug that has extended my life, and I am whining.
My problem is with the additional drug Benadryl (diphenhydramine), a potent antihistamine that I receive to prevent infusion reactions.
Also, Darzalex infusions are given slowly to help prevent infusion reactions. So I’m at the cancer center for six hours for each infusion.
In addition, two out of three weeks, I receive a subcutaneous injection of Velcade and oral dexamethasone. I also receive Tylenol (acetaminophen, paracetamol) and metoclopramide, all in pill form, and one hour before before the Darzalex infusion, I am given intravenous methylprednisolone. So on these days, my body receives a total of seven drugs intravenously, subcutaneously, and orally. No wonder I feel weird by the end of the day.
Yet the drug that really slams me is Benadryl. In a matter of minutes, I become quite groggy. I am unable to read, to make phone calls, or write notes. In addition, I need a ride home. As a goal-driven person, I struggle with not being able to accomplish anything for an entire day. Monday is a lost day.
Velcade causes lost days as well, but the effect of this drug is more gradual. By the end of a Velcade cycle, which consists of four injections over two weeks; I notice the cumulative side effects. Neuropathy, gastrointestinal complaints, and fatigue are the common side effects for me. Plus I require daily naps, and have difficulty focusing on projects. By the second week of the cycle, I have lost days.
For three months, I took the bad with the overwhelming good of the treatment protocol.
I expected little of myself on infusion days, slept a lot, listened to music, and drifted the day away. I did learn to walk with someone at the end of the day, to shake the drowsiness. I did not complain, much, because I was grateful for how well my myeloma was responding to the new treatment regimen.
Then two months ago, in February, 2017 I was brought down with a double whammy.
First I needed to get a “blue light special” from my dermatologist. As a result of many of my prior multiple myeloma treatments, I am vulnerable to skin cancer. In the past five years, I have had melanoma on my leg and several squamous lesions on my face.
During the "blue light special," an ointment of Levulan (aminolevulinic acid) was first applied to my face. Then a special blue light – which, by the way, is not a laser – was used to activate the drug. This procedure removes actinic keratoses, pre-cancerous lesions, on my face. Afterwards I was required to stay indoors and avoid any natural light. Then my face responded with a severe, uncomfortable sun burn. I lost three days.
The following week, I woke up with fever, chills, and nausea. I felt miserable. A visit to my primary physician affirmed that I had influenza B. I lost a week. I thought this flu experience was particularly unfair because I did get the flu shot. The same thing happened to me last year.
By the time my fever dropped and I was able to eat again, I knew I needed to make an attitude adjustment.
After six years with this disease, I have learned that whining is only a temporary strategy with minimal benefits. Plus I knew through my husband’s valuable feedback that I was not pleasant to be with.
What helped to change my attitude was another camping adventure. Last month, I walked the salt flats in Death Valley, hiked in slot canyons in Utah, and saw fantastical panoramas of red sandstone, blue skies, and dark green forests of pinyon and other pines. Each day was a blessing.
Currently I am in remission. This is my first remission in three years. I have enough platelets and hemoglobin, which means more energy, and less bruising. My immune system is stronger.
As I celebrate, I reflect on the lessons of lost days.
Lost days always represent loss of control. Since I am a goal-driven person, I find letting go so difficult. But I can learn. I can just ride the day out. Perhaps watch old movies or listen to music.
I know that lost days will return. Maybe next time, I will whine less.
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
So true and well said. I approach my 12th year with multiple myeloma and I remember many 'lost days'. Days where I just sat on the couch and stared. Stared at nothing really. Now I'm in a complete response after 6 cycles of Velcade. I feel great and yet weird. I have normalness. That's weird. I'm a cancer patient and yet I'm not a cancer patient right now. I am incredibly grateful for this time of normalcy, but I remember acutely 'the many lost days'.
So glad you are in remission and enjoying it.
Thank you for sharing your story. As a relative newbie to Darzalex, I was interested to see what others endure with treatments. But, I currently don't have the Velcade kicker. When I've been on that in the past, I too had down days. God bless ya'!
I wanted to share with you that the Benadryl seriously messed with me too. I went to a lesser pill form of the Benadryl, and that helped greatly while still aiding in the side effects. I suffer from extreme exhaustion, low BP, severe headaches, serious dizziness, and body aches. I tell myself to get through my work shift to get home and sometimes straight to bed. But you're right, it messes with my psyche. I'm 14 years out and have never enjoyed remission, so I'm praying this treatment will get me there, and that's what keeps me going.
I so enjoyed your article and want to thank you for expressing your thoughts so eloquently!
Maureen – You are such a wonderful person that I can relate to through your writing. I wish for you: found days, less stress, beautiful environmental surroundings, and personal strength. I just had my two year (post) transplant check-up yesterday. I'm hoping when I return again in June for MRD testing that the docs will tell me some good news. I am a del 17(p) patient, as I believe you are, and high risk. I need to hear some good news from doctors, because I MUST claim some of my LOST days back.
Thanks so much Maureen for sharing these thoughts! Lost days - in some ways a lost season - has been my big frustration of late. Three and a half years ago, when I was first diagnosed and was really ill, I took the many lost days of that season in stride, since I started out not even sure that I would live much longer. As things began to rapidly improve with treatment, and I had enough energy to cook a meal or rake leaves in the yard for a short while, I was extremely thankful. Within four months of treatment I achieved a stringent complete remission ... which seemed a miracle given where I started. But I guess I've been taking my health and energy for granted again. In December, the myeloma made a minor reappearance, and although I still felt quite well, this has meant doing 16 weeks of CyBorD again. And THAT has upended my schedule, as I should have been back in West Africa during February and March as I normally am at this time of year. Instead, I am here in the States, trying to manage things long-distance, needing naps I don't feel I should need, or sitting at my desk trying to focus while an hour or more just seems to slip by, or – even more annoying – sitting in the bathroom thinking, "Could we please just get on with things?!"
An attitude adjustment and some serious outdoor time are definitely in order! Thanks for sharing your experience and for helping me to put things back in perspective. Blessings!
Paul Butler
Maureen,
Although you have had a lot of lost days, the Darzalex is working for you. First remission in 3 years, that is very positive! I pray that you can remain in remission for a long time and they can start backing off some of the drugs. For example, possibly spread out the Velcade to one shot a week or even one every two weeks. Back down the dex so that it is only once every other week, and so forth. I see you back running soon if this all continues positively.
Good Luck to you.
Whine all you want, Maureen. You earned that right.
Thanks for sharing your ongoing story with us, Maureen! I guess that the good news is that the Darzalex is working, but not so good that the Benadryl and the injections of Velcade plus the other meds you have to take are really a lot for your system. Sorry to hear that you had the flu this winter and also needed the treatments for the skin cancer. I really hope that it all eases up and that you can get out and enjoy nature or just whatever you like to do. I don't think you are whining, just telling us about your treatments. Best wishes!
Hello all, It is so good to hear from my tribe, myeloma warriors. Sorry for the delay, but I have been outdoors every day as much as I can. Nothing as unpredictable or beautiful as springtime in the Rockies.
Caroline: It is so encouraging that you are 12 years post diagnosis. Also so glad that the 6 cycles of Velcade worked for a remission. I do understand how it feels weird to be a cancer patient and yet not in treatment. Seize the day.
Robyn: I respect your perseverance with 14 years of treatment. I hope the Darzalex gives you the dramatic response that I experienced.
Cheryl: Thank you for your kind words. As you already know, don't wait for news in June, good or not good. With whatever energy you have, go outdoors. I hope it is spring where you live. I wish only good news for you.
Paul: What an articulate and heartfelt note. I believe we might share a common trait, such as being goal driven. Nothing knocks the goals away than fatigue, low energy and difficulty focusing. All side effects. So take the nap, you do need it. I respect that you are managing long-distance affairs in Africa, which is harder than being there. Lost days bring loss. I am glad you will get outdoors, which will magically change your attitude. I wish you well.
Ron: I appreciate your suggestions and kind words. The good news is that with my positive response, I am off the Velcade and no dexamethasone. Not until June, when I will get a monthly infusion of Darzalex. I always enjoy reading your comments.
April: Thanks for accepting and understanding my need to whine, however briefly. I await your next column which gives me another perspective.
Nancy: Thank you for the kind words. I hope you are enjoying your recess from your treatment.
I think you too are IgA? Absolutely great that the Darzalex is working for you, because it didn't for me since June and even with Velcade, then Revlimid. Very disappointing that my IgA just kept going up while on treatment. Best to you & the outdoors.
Hi Maureen, thanks for writing our lives! I'm right behind you, as I just completed Darzalex #6. Fortunately, I do well on Benadryl and dex. So weird, as I was never a "druggie" prior to multiple myeloma, but now, as much as I panic before switching to a new treatment, my body does pretty good with drugs lol
I had read your column (and so many others) detailing initial Darzalex infusion reactions, and honestly I was quite "scared" for my first infusion. But I pre-med'd with 20 mg dex the day before and day of, welcomed the bag of Benadryl, and didn't even notice the Tylenol. I had a slight wheeze and cough a few hours in. We stopped the Darzalex infusion for 20 minutes, they gave me more Benadryl, and off to the races we went. I am grateful for all your details, and those of others, as it mentally prepared me for the "what if" and "what could happen". I am thrilled you and Darzalex are doing so well, and I am happy to report that my IgA went from over 4100, to now 579! My M-protein from 3.6 to 0.69! I'm in year 7 of this crazy myeloma journey, and most of my days are, as you so aptly put it, "lost days". The fatigue is insane for me, and Darzalex gives me a delightful present of crazy fever-like painful skin. No fever, just the ouchy fever feeling for several days after Darzalex. (Originally we thought it was the Velcade, so we ditched that, and I'm on Pomalyst now). I went from being a super active outdoorsy person, with a lifetime career as a college counselor, to a no-helium, "lost days" most days gal. But that's okay, we're here, and so far we're winning, right?! Thank you for your great columns, Maureen, and I wish you continued success with Darzalex, and many days not "lost" but full of your favorite things.
Hi Maureen, so happy to hear your treatments have been successful! Thanks for the information about treatment prep and experience with Darzalex. It is a different form of treatment, and it is going to help many of us in the future. I hope the lost days will return to you in the form of an extended remission. You have earned it! I enjoy your columns, and I want you to be able to get out there and enjoy the views. Yippee-yi-aye to you!
Dear Suzanne, Sorry to hear the disappointing news about the Darzalex. I do have the IgA also. I have been there with you on many other treatments. I believe this is a hopeful time for us as myeloma patients. There is another treatment out there for you that will work.
Dear Julie, So interesting that your results are similar to mine and yet your side effects are so different. Just goes to show you how unique each of us are. I wish for you to progress quickly to the next stage when you receive only monthly treatments. You will hopefully have more found days.
Dear Marcia K, Thanks for your kind words. I love writing for the Myeloma Beacon because of readers like you. I am getting outdoors and enjoying springtime in the Rockies.
Maureen - Thank you again for sharing all the details of your current situation. I have been particularly interested in your progress on Darzalex because you began your treatments about the same time my husband started on Empliciti (elotuzumab) - both monoclonal antibodies. So happy that you are in remission. We head to MD Anderson next week to see how my husband is doing. Like you, he has many of the same side effects from his treatments. Also like you, he has lost days. We just live day to day and enjoy those days that he feels good. A real change for two type A personalities. To combat our inability to go out like before, we have turned our attention to having a garden. We had modest success last year and are hoping for more this year. Keep sharing your stories - we love ready of your progress.
Dear Patty B,
Here's to good news when you arrive at MD Anderson. The waiting or the not knowing is always difficult. I like you changing a way to get outdoors with a garden. Hopefully not too big, so you can pace yourself. The gift is that you both will work on the garden.
Thanks for sharing my journey with me.
Maureen, that is wonderful that you have had good results with Darzalex. You might eventually become immune to the Benadryl brain effects. I know it is happening to me at Darzalex #26, although some of it may be due to the Lomotil (diphenoxylate and atropine) or the Sensipar (cinacalcet) I take. Right now the Benadryl simply burns my veins after it is injected. This also happened seven years ago and they simply switched infusion arms after developing this "Benadryl burn allergy". A fistula prevents that now.
Don't assume that you will forever be "immune" to the Darzalex respiratory side effects. I thought I was. Days after the switch to monthly Darzalex infusions and with a first time, 45-minute, infusion step rate rather than the normal one hour steps, I had the worst cold of my life. Lost my taste for several months. My lungs were so noisy, all the nurses at dialysis were certain I had pneumonia. I said no, but had the chest x-ay to satisfy them. There was no pneumonia. Needless to say, I only use the one-hour step rate since that time.
At least with subcutaneous Velcade injections, your chances of developing neuropathy are much reduced. It is tough not to be able to feel your feet or finger tips and sometimes the leg below your knee.
If you REALLY want to feel out of it, try bracketing your infusion days between three-hour-long dialysis session days. Medicare disallows payments for Epogen if your hemoglobulin is higher than 12. My dialysis nurses seem deathly afraid of exceeding that level and keep me sub-11 on average. Low hemoglobin at 5,000 feet altitude suppresses your energy levels and adds to the dialysis / treatment fatigue.
I am currently on dexamethasone, Revlimid, and Ninlaro.
The comments about Darzalex are of great interest.
I am beginning my third week on Darzalex. I have not had any major side effects except for fatigue on the next day. Then I do feel I have a 'lost' day. I have no energy to do anything. My 'to do' list becomes 'not to do now'. Each day is precious, but I cannot get anything positive done and the day is gone. Reading, watching TV, etc., is of no interest.
Yes, the Benadryl makes you feel you are in la la land. The room starts floating, my words are slurred, my brain is muddled.
I am waiting to see the results of the treatment. Oh well, with the Lord's help and my doctors' efforts, I have been holding on for seven years. Some good days; some not-so-good days; some bad days. Waiting for the next chapter of my life with myeloma.
Dear David, Thank you for the report about what happened to you with the monthly infusion of Darzalex. I have had a reprieve for 2 months and begin the monthly plan of Darzalex infusions in June. So I will take your report and not rush it. Your schedule with dialysis is another huge challenge and I commend you for hanging in there with both. Last summer, I averaged a Hgb of 10 or 9.5 most weeks, so I relate to the fatigue and low energy. Hang in there, your determination is admirable. I wish for you more days that are "found" rather than "lost".
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