Myeloma Dispatches: It’s Only Temporary
I am lying in a treatment room with a large window that looks onto a fall-colored ridge. The room is crowded. My husband is with me, leaning over holding my hand, as are two familiar oncology nurses, a young pharmacist, and my long-time, faithful oncologist. Everyone looks worried.
I am in the midst of experiencing fever, chills, and then the worst, vomiting. Even though I am the one with the awful symptoms, I feel the most distant. Simple nursing maneuvers soon help: warm blankets wrap me like tamale, the drip of the new drug is slowed down, and something for the nausea is added. A few minutes, maybe an hour, later, I stopped vomiting, my fever dropped a couple degrees, and I could speak in full sentences.
Apparently I had experienced a mild infusion reaction to Darzalex (daratumumab), my new monoclonal antibody myeloma drug. The treatment team believed that the symptoms were mild enough that they could safely continue the infusion of the drug. This is good news for me because my last treatment of Empliciti (elotuzumab), Revlimid (lenalidomide), and dexamethasone (Decadron) had failed after just four months. Once again, the treatment was temporary.
My myeloma cells - those big, clumpy cells - were crowding out my platelets, white blood cells, and red blood cells at an alarming rate. I was traveling in British Columbia for a writers retreat and a visit with my sister when my symptoms worsened. This time my sister and I both could see the effect on my body. I became fatigued, short of breath with short walks, even at sea level in beautiful Vancouver. Strange bruises emerged with minor trauma, mottling first in my lower legs. It was time to go home.
One day after I arrived home, I met with my oncologist. The good news was that he had a new plan. Yes, I do love those new plans.
He gave me a recent copy of the New England Journal of Medicine, in which a new treatment regimen for relapsed multiple myeloma was reviewed. I was the perfect candidate for the regimen since I had undergone a minimum of three prior regimens. In fact, I was now at number eight.
The strategy was a triple prong attack: weekly infusions of Darzalex, twice weekly Velcade (bortezomib) injections, and dexamethasone four times a week. Whew, what a plan! I gathered my tools, a pill organizer, a calendar, and positive thoughts. The additional challenge was that I probably would not see any impact from the treatment for four to six weeks. I was haunted by the memories of my stem cell transplant five and a half years ago.
There was another strange detour to the new plan. I had a squamous skin cancer invading my right cheek. It had been growing in the last couple of months. The oncology team consulted with a surgeon about next steps. They thought it was a reasonable risk to perform minor Mohs surgery before the first Darzalex infusion. They would even give me three units of platelets before the surgery. I still had one week before the new treatment regimen was started. The decision and incision were made. I did bleed more, yet with more platelets and red blood cells, the face discolored and swelling stabilized.
On the first day of the Darzalex infusion, after the mild infusion reaction, I began to bleed from the week old incision on my face. I bled and bled. Apparently my platelet count bottomed out as a reaction to the new drug. My support team swelled to a wound care specialist and a worried surgeon on the telephone.
“She needs platelets,” said the skin surgeon. “We can’t give platelets until the Darzalex infusion is completed,” replied the oncology nurse. Simple nursing measures such as bulky reinforced dressing stemmed the bleeding temporarily.
I won’t keep you in suspense. I completed the Darzalex infusion, and immediately received three units of platelets. I stopped bleeding. The bleeding was only temporary. I walked out under my own power with the largest, ugliest facial dressing.
I had been in that treatment room with the loving team of nurses, doctors, and my husband for 10 hours. I believe they all were more relieved than I was. I needed to get outside and feel the sun on my battered face.
It was only temporary.
I am still a good candidate for the new treatment regimen. The challenge is to keep me functional with supportive blood products until the medications halt the advance of the aggressive myeloma cells, which will take a minimum of four to six weeks.
At first, this thought seemed scary to me. I have received platelets six times by now, and weekly blood transfusions for the past three weeks. My memory of a sprint triathlon in August has faded. I am weaker. The good news is that my fear is only temporary.
My husband, my heart companion of 31 years, has taken a family medical leave. That way he doesn’t have to juggle the demands of a full-time work load with being a caregiver.
My angels on earth, my faithful friends, came through again with their support: well-timed meals, just dropping in for laughter, and tiny outings.
My favorite sight the other day was a herd of 200 cashmere goats hired to weed the sides of a local bike path. My dear friend knew that I would enjoy that diverse group of tan, white, and black goats busily chewing on weeds near the Crystal River. I breathed in the sight and realized I was again in hope. I will rest, become quieter, and gird myself for the next fight.
Last Monday, I received the second round of treatment. I experienced no infusion reactions, no fever, no chills, no vomiting. I had platelets first and that worked well. My blood transfusion four days earlier had stayed in my body. Progress.
My body is covered in a variety of bruises in very strange places, but my face is healing. The oncology team allowed themselves a small cheer. Treatment seems to be working.
I remember that fear is only temporary. A sign of my hope is the completion of this column.
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 .
Related Articles:
- Northern Lights: Starting Treatment With Darzalex
- Myeloma, Party Of Two: What’s Behind Door #4?
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
Good luck on the Darzalex, Maureen. I am on my 11th treatment. They just added Pomalyst. I am hoping it will bring my M-spike down to 0. Good luck, I hope all goes well for you. Joe
Best wishes for continued healing!!
Sending caring thoughts for good things to go your way, Maureen.
You are in my prayers.
You are my hero, Maureen, and tougher than I! I'm scheduled for my 50th (3 years) high-dose Darzalex infusion on October 11, 2016. My M-spike has been 0.0 for almost 3 years, and I hope yours will become likewise!
I appreciated the detailed and candid nature of your post. What you experienced with Darzalex is quite common. My first infusion of it gave me chills after the first hour or so (the IV was about 4 hours long), but since then, no reactions, thanks to the front-loading of meds for nausea, allergic reactions, fever spikes, etc. I just finished 8 weeks on Darzalex, am taking a week off waiting on results, then we expect to go to a half-dose. I continue on Velcade, so long as my platelets can handle it, and of course dexamethasone, as with the last nearly 3 years. Fun, fun. I look forward to your next column.
You are such a light! And what an overcomer! Sending prayers for continued resilience and total healing. May you continue walking in victory in spite of these "momentary troubles".
Wow, Maureen, that is quite story and very instructive. Thanks and best wishes for a successful treatment.
Dear Maureen,
I hope that you are starting to feel better from the surgery on your face and also the 'mild' reaction to Darzalex. I really enjoy reading your columns, and you have such a good insight into everything medical, being a nurse. Even the heated thin blankets that patients are given to stay warmer in the hospital are familiar. I know you felt ill in Vancouver, but even though one should have a 'high altitude advantage ' in going from an area at high altitude where you live, to sea level, sometimes the salt air right at the coast makes one tired.
Best wishes and hope everything goes well for you next month.
Stay strong and positive! You will recover!
So glad that you have recovered from that "mild" infusion reaction and your bleeding episodes. Sounds like a total nightmare, but it is now past except for the continued need for platelets. I was started on daratumumab after my original treatments hit a plateau. I've had 4 infusion sessions so far, and blood work after the first two was amazing. All of my bad numbers dropped like a stone and if this keeps up, I hope that I too will get to that magic number of zero. I was also lucky to have no infusion reactions. I'm glad that even though your initial reaction was tough. The future infusions seemed to have gone better. When this drug works, it is nearly miraculous. I wish for you the same success that I seem to be having. Fingers crossed for both of us.
Thanks so much for writing this all down. I'm very hopeful the daratumumab, Velcade, and dex will work.
Dear Maureen,
The first Darzalex infusion does cause a reaction. Mine was like an allergy shortness of breath. I too am IgA and keep watching the numbers drop after 13 treatments. I feel quite well since this is just a one drug plan. My blood numbers are quite good and of course I know this is "temporary" though I wonder why if this class of drug targets the CD38 and keeps the myeloma at bay, why does it progress? I so love your scene of the goats. So much beauty to behold.
Best of luck and health.
Dear Maureen - What a harrowing experience you have endured these past several months. I am sorry that the Empliciti (elotuzumab) did not work for you, but am encouraged by your response to the Darzalex. I also pray that you will continue to get good results on this current regimen. My husband has been on Empliciti since January and it appears to be working for him. However, like you, he has developed several squamous cell carcinomas since starting the Empliciti. Thanks again for sharing your stories and treatment experiences. I look forward to your next column.
You have been through a lot. It's very helpful, always, to read about other people's experiences. We can learn from your experiences. I hope the treatment gets easier and works in bringing your numbers down. Best to you.
Maureen, you show great courage and strength in your travails with multiple myeloma. I hope the Darzalex reactions tamp down and that it holds the myeloma its captive!
Love your columns. Keep writing!
Aloha Maureen,
You are such a trooper! Thank you for reminding me that my petty complaints about the discomfort of my maintenance treatment are just that – petty. You have also reminded me that we all have a serious disease; we need to remember not to take the good days for granted.
It's amazing how hard that is to do!
Feel better. Keep planning that next triathlon.
Much Aloha!
Tom
I like settling into the flow and quiet tone of your words, carried from one spot to the next, from fear to hope, from pain to feeling not bad, from imagining your circumstance to seeing where we want to be, all of us. I pray the new drugs work. You have much more to say.
Dear Maureen,
I too am on Darzalex. Had 6th infusion today. I had a stuffy head and my first infusion was stopped. I was the first Darzalex patient and the staff was more nervous than me. I got Zantac (ranitidine), Ativan (lorazepam), and 100 mg Benadryl (diphenhydramine) after only half hour of infusion. I was so woozy, I could hardly get to the bathroom. My infusion took 10 hours also. No further reactions, so you have that to look forward to.
You said it takes 4 weeks to show results, but my doctor mistakenly did the myeloma panel at 2 weeks and my numbers were going down already. I think by looking at total protein I have seen about all I will get – maybe a 30% reduction. I will gladly take that and hope it is not too short lived a response.
Wish you good response. A fellow not in name only.
Maureen Stanley
Dear Maureen,
Best of luck on the new treatment. You are in my prayers for a quick trip to a long remission.
Thank you for sharing this experience with Darzalex and for your experience with Empliciti and the subsequent symptoms you've had. I read your articles more closely since I know you're a "high risk" sister. I'm so sorry you had such an experience with your relapse, but I'm praying the Darzalex will do the trick for you.
Hello readers,
Your comments mean so much. The sending of prayers and healing thoughts from Kristina, Sylvia and Lorrie are a direct infusion into my spirit.
Joe - Another Darzalex patient. After 11 treatments, sounds like it's working with the M-spike dropping. Good luck with the Pomalyst.
EC - Not sure why you think I'm stronger, you've been getting Darzalex for 3 years. Your report is very encouraging to me.
Pusser - Another hopeful report on the triple-prong treatment of Darzalex, Velcade, and dex. I have to say that so far the Velcade is the toughest on me, with fatigue, bloating, and change in taste.
Thank you again for so many words of hope, encouragement. The end result is " feeling not so alone".
Maureen
Dear readers,
For me this column with your comments has been the most powerful for me at this time. I had to take time to be free of some of the side effects of Velcade or dex to thoughtfully reply.
Dana - Wishing me a return to "walking in victory". Lovely reframe.
Andrew - I really am a faithful reader of your column, so thank you for your kind words. I usually comment but havent't been able to lately. Keep writing.
Nancy S - I loved my time in Vancouver, even though I was weaker. My walk in Stanley Park was a high point. Please keep writing, really relate to your world.
Barbara - Wow, your report of your response to Darzalex was so encouraging. "Bad numbers dropped like a stone".
Suzanne - Great, another IgA sister on Darzalex with success. I'm glad you like the goats.
Dallas and David - Your cheering words touch my spirit in a tangible, positive manner. Like a booster shot.
Maureen
Maureen,
I am praying that this new regimen works for you. I have heard a lot of good things about the Darzalex, Velcade, and dex triplet. I look forward to you regaining your strength and reading about your triathlons.
Maureen,
In my earlier post, I forgot to tell you that I am also IgA like you. Wonder what the significance of that is regarding Darzalex?
Barbara
Hello Maureen, I do like that name. Sorry I've been late responding. Navigating the new treatment regimen has kept me busy. Are you on the single drug of Darzalex?? I appreciate the description of your response to the initial dose of Benadryl. Hopefully by now you are getting less Benadryl and the infusion is taking less time. I am on the 4th week and my M protein and IgA are dropping. Thanks for your connection and comments.
Maureen
Maureen, you did it. Exactly like you said you would. Beautifully written with the courage and love you are known for. What an honor it is to be part of your team.
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