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Myeloma Dispatches: Report From The Battlefield
By: Maureen Nuckols; Published: November 29, 2016 @ 4:44 pm | Comments Disabled
I am slogging through a new battlefield of treatment.
Weekly for 10 weeks, I’m receiving intravenous Darzalex [1] (daratumumab) over a five-hour interval. One hour before the infusion, I take a cocktail of Tylenol (acetaminophen, paracetamol), metoclopramide, Benadryl (diphenhydramine), dexamethasone [2], 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 [3] (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 [4], 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 [5].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2016/11/29/myeloma-dispatches-report-from-the-battlefield/
URLs in this post:
[1] Darzalex: https://myelomabeacon.org/tag/darzalex/
[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[3] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[4] column: https://myelomabeacon.org/headline/2016/10/05/myeloma-dispatches-its-only-temporary/
[5] here: https://myelomabeacon.org/author/maureen-nuckols/
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