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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 .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

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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