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Myeloma Dispatches: It’s Only Temporary

By: Maureen Nuckols; Published: October 5, 2016 @ 3:02 pm | Comments Disabled

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 [1] (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 [2] (elotuzumab), Revlimid [3] (lenalidomide), and dexamethasone [4] (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 [5] (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 [6] 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 [7].

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/2016/10/05/myeloma-dispatches-its-only-temporary/

URLs in this post:

[1] Darzalex: https://myelomabeacon.org/tag/darzalex/

[2] Empliciti: https://myelomabeacon.org/tag/empliciti/

[3] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[4] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[5] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[6] Mohs surgery: https://en.wikipedia.org/wiki/Mohs_surgery

[7] here: https://myelomabeacon.org/author/maureen-nuckols/

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