Myeloma Dispatches: Report From The Battlefield
I am slogging through a new battlefield of treatment.
Weekly for 10 weeks, I’m receiving intravenous Darzalex (daratumumab) over a five-hour interval. One hour before the infusion, I take a cocktail of Tylenol (acetaminophen, paracetamol), metoclopramide, Benadryl (diphenhydramine), dexamethasone, and intravenous methylprednisolone. This combination should decrease the risk of an infusion reaction. I'm told that infusion reactions are common with the first two Darzalex infusions. Although I suffered a scary reaction during the first infusion, I have not experienced a reaction with the following ones.
On some weeks, I receive Velcade (bortezomib) at the end of the intravenous Darzalex. Plus, two out of three weeks, I return to the cancer center a second time for another Velcade injection. I am on a tight leash to the cancer center.
In my October 2016 column, I described details of my last relapse. For me, this was the worst relapse ever. I required weekly blood and platelet transfusions just to function. I was weak, short of breath, and covered with spontaneous bruises. I was scared.
My faithful oncologist recommended the new treatment protocol of Darzalex, Velcade, and dexamethasone. The protocol reminded me of a battle plan, with a complex drug regimen as the key weapon. After reading the research results, both the oncologist and I were hopeful that the regimen might work for me.
In the six years since my multiple myeloma diagnosis, I have undergone seven different lines of treatment. In addition, I received an autologous stem cell transplant in February 2011. Each line of therapy worked for a while ... until it didn’t. Either the drug stopped working, or the side effects became intolerable. Unfortunately, my type of multiple myeloma is high risk because of its genetic profile – deletion 17p and translocation t(4;14).
Yet I have enjoyed many periods over the past years where the myeloma cells stop growing. In those in-between times, I gulp down life. I travel and camp with my husband, complete triathlons, write, and spend time with family and faithful friends. In short, I enjoy life.
This new relapse forced both my husband and myself to evaluate our life. What do we need to do for me to keep living?
We agreed that a new battle plan, although aggressive, was the best choice.
Now, how can I be a good soldier to fight my cancer?
I came up with the following strategies:
Follow instructions
Often the orders are simple. For example, I had a certain routine to follow before the Darzalex infusion. I needed to take the dexamethasone, Tylenol, and metoclopramide orally at home. I learned the hard way that I had to eat a good breakfast before the pre-medication entered my body. The first week I didn’t eat enough, and I was nauseated. I also need to drink plenty of water with this treatment, which is challenging for me. Now I carry water everywhere, sipping throughout the day, measuring my progress.
Be kind to my team
On the days I am in the cancer center, I interact with many people in different roles – nurse practitioners, nurses, medical assistants, receptionists, and valets. Their job requires them to care for many ill people, with many demands, all day. As a frequent visitor, I want to make their lives a little easier, so I learn everyone’s name, write personal notes, and bring treats on a regular basis.
Be present in the here and now
This is really difficult for me. Often I become anxious before my long Darzalex day. I am practicing short meditation and abdominal breathing, and that works well. I write my fears and hopes in a journal, which helps me to leave the fears on the page.
Practice strategies to increase effectiveness of treatment
I focus on healthy nutrition. This is difficult on steroid days because I want chocolate, donuts, and fries. I am not perfect with my resistance. I use acupuncture for the joint pain and neuropathy. I exercise regularly.
Prepare for the long Darzalex days
With the Benadryl, I become groggy and cannot do much. I cannot read, which is my favorite coping method. I learned that with a chair massage and music in my ears, I am able to sleep. The hours pass easier. I accept that the Darzalex day is a lost day.
Speak up for myself
For the first two weeks, I received a high dose of dexamethasone three times a week. I couldn’t sleep and my mood swings were intense. Fortunately, I was responding well to the treatment – enough that I didn’t need any blood transfusions. At my request, the oncologist cut the dose of dexamethasone, and my side effects lessened significantly.
By the seventh week, I felt numbness, tingling, and joint pain in both legs. Once again, I spoke up. The oncologist lessened the Velcade dose, and my side effects decreased in intensity. I respect how the entire cancer team listened and responded quickly to my concerns.
Soon I will be at the 10-week mark with this protocol. The results so far have been very promising. For the first time in a year, I am not anemic, at risk for bleeding, or even immunocompromised. My IgA is close to being within normal limits. And I feel good – something that is especially vital to me.
The next battle plan is to administer Darzalex every three weeks. Velcade will still be given at regular intervals. My leash to the cancer center will be loosened. My husband and I have planned a trip to Hawaii in the in-between time.
The war on my multiple myeloma continues, but this battle plan has given me more time and more hope.
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 .
Hi Maureen,
I'm glad your new treatment is working. It sounds like hard work, but worthwhile. Also, I liked your guidelines: I should try better to follow them myself.
Enjoy your trip to Hawaii!
Dear Maureen,
The "battle plan" is an excellent idea. I hope your trip to Hawaii will be wonderful. You deserve a fantastic time there with your husband. Wishing you well, for sure.
Maureen,
I'm so happy to hear that this new protocol is working so well and that you are feeling great again. Enjoy your trip to Hawaii!
Dear Maureen,
Your articles always inspire me. Thanks so much. I am a runner, fantasizing about a triatholon, but not there yet. Your story and your attitude are exactly what I aspire to. It is devastating for me to learn about your recent setback. But that is the disease.
For me, I was diagnosed in January of 2015. I underwent induction treatment and an autologous stem cell transplant. My brother died of leukemia last September and I ran a half marathon in March. I am currently on maintenance and I am back to work full time, working out, running, and refusing to let this disease get the best of me.
I have read all of your articles and they have inspired me to do what you do. Thank you. Thank you. Please come back to yourself and your friends, your healthy, engaged self.
I need you, we all need you.
With love,
Rebecca
Dear Maureen, Best wishes with your treatments. I think that it's wonderful that you have a plan to get through the worst of the treatments. I hope that you and your husband have a wonderful time in Hawaii. Aloha!
Maureen, thank you for your insightful column. I imagine that your coping mechanisms make for great advice for many readers. Congratulations on the good progress thus far on the Darzalex! I love that your planning a trip to Hawaii, and I'm wishing you a full and speedy recovery. Hang in there!
Best of luck Maureen. You sound like a warrior and your battle plan sounds like a winner. We are all behind you on this.
You are strong and wise. Great advice with your strategies, and I pray that your newest treatment regimen is the one to keep you going for many more years!!
Great strategies Maureen, thanks. I just started Darzalex and Pomalyst a month ago, so these tips will help me out for sure.
Maureen,
Very encouraging. The ordeal of treatment is considerable but appears to be working. Hope you can achieve a full remission and get back to doing what you enjoy. I especially hope that you will be able to do another tri.
Hello to Trevor, Sylvia, Janet, Your encouragement and cheering is part of the reason that I write. I wish the same for you.
Dear Rebecca B, I am sorry to hear about your brother's death last year. On top of your new diagnosis, and a stem cell transplant, you have survived quite a time. I really respect the half marathon in March. Hang in there and enjoy the in-between times.
Dear Nancy, I hope your own treatment is going well too. You are one of the role models for me in fighting this chronic cancer. Take care
Dear Tabitha, Thanks for the kind words. Although I will never experience a full recovery, I will savor this latest remission.
Dear Mark Pouley, I do try my best to be a cancer warrior. How about you with this disease.
Dear Susan, Thanks for the encouragement. The words from this myeloma community keep me going.
Dear Matt, I hope you have the same stunning results that I have experienced. Perhaps you will have fewer side effects with Pomalyst than I had with the Velcade.
Dear Ron, Today I renewed my USAT license so I will try again to do a tri. Also training for an open water swim.
The comments this month as always lift me up and give me renewed strength to continue to be a cancer warrior.
Maureen, I appreciate the detail of your treatment regimen. It is helpful for others making treatment decisions to hear from someone who is going through it.
Thank you for keeping writing, despite being right in the middle of a very tough battle. That alone is inspiring. Hope you will keep feeling better with this new regimen.
Thanks for your informative article. I am following in your footsteps and begin this new drug early next week.
Do keep us updated about how your new treatments are going!
Glad to hear that the initial results of this newest treatment are encouraging. Here's wishing you continued (for a long, long time!) positive results with this treatment. You've been through a lot, going through seven lines of treatment in 6 years. I hope this one sticks for you.
Thanks for the guidelines. I know I'll be referring back to them now and then, to measure myself against them.
Finally, have a blast in Hawaii!
Mike
Hello all, Celebrating completing a 10K walking and not being anemic, I was faster.
Dear Andrew, Thanks for the acknowledgement. I was worried that this article was too dry.
Dear Myositis, I am feeling stronger and enjoying a 3-week break from treatment, thank you for the encouragement.
Dear blustein, Hope your response to Darzalex is as positive as mine.
Dear Mike, I am flying out tomorrow and I plan on having a blast.
Hi Maureen, I hope you enjoy your trip and come back refreshed.
My Mum was diagnosed with multiple myeloma last November, the day after her 79th birthday. Her oncologist found she needed heart surgery before beginning treatment for the multiple myeloma. She had the surgery, and commenced a new trial of Darzalex, Velcade, and melphalan with prednisone at the end of April. Her levels have gone from just over 50 down to 13. We just celebrated Mum's 80th birthday.
It has been so encouraging to read your story. Thanks so much for your courage and many helpful hints on coping!
I have been reading the Beacon for over 2 years following my advanced stage diagnosis in June 2014 at age 58, and this is my first post, as Maureen's story hits very close to home for me. I am right now 6 hours into my first Darzalex drip and doing OK. I also have tried every other line of treatment, including a stem cell transplant last December (and got 3 months of remission), so I am hopeful for the Darzalex - as I don't know of any other options if it fails. Tough time of year to be ill again, but I wish all the good fight and a Merry Christmas.
Thank you, Maureen, for providing the battle plan and your progress. I am so glad you are feeling much better and able to live life and to travel. I have been reading what I can about Darzalex. It is a lot to do, but many times it is well worth the effort. Your articles are very helpful to me and to the other survivors. May your remission last a long time so that you are able to win a race by 2018! You so much enjoy the outdoors, and you are much happier when you can get out there. May your efforts be rewarded.