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Northern Lights: A Crash Course In Multiple Myeloma And Initial Chemotherapy
By: Nancy Shamanna; Published: April 12, 2012 @ 9:51 am | Comments Disabled
In mid-August 2009, I received the diagnosis that I had been dreading and hoping against hope was not true: multiple myeloma. I realized later that if my diagnosis had been put off much longer, I could have been much worse off, but at the time, it was still very upsetting.
My husband Dilip and I started to digest a whole lot of information about multiple myeloma. I felt like I was in a crash course of cancer education; we went through pamphlets provided at the cancer center, textbooks on cancer, books on multiple myeloma, and material that we found exploring Internet sources. The course was supplemented by conversations with my doctors.
Educating myself helped me to fend off the feelings of fear and uncertainty about my future that kept welling up in me, threatening to make my waking hours a nightmare.
The frightening aspects of multiple myeloma to me were how short the survival time might be in years, as well as the terrible physical toll it could take. Broken bones were only one problem; many patients have far worse problems than I had yet encountered.
However, since newer and more drugs were available than ever before or in the process of development, we held out hope that the future was getting brighter for many.
Very soon after my diagnosis, I found myself taking intravenous Aredia [1] (pamidronate), a bone building medication, and oral dexamethasone [2] (Decadron). I was scheduled to start ‘induction chemotherapy’ with Velcade [3] (bortezomib) at the end of August.
All three drugs are interesting in their own ways.
Aredia, a bisphosphonate, is a bone building medication given intravenously. It helps to prevent fractures, spinal cord compressions, as well as normalizing the levels of calcium in the blood and reducing bone pain. It was the reduction of pain that I first noticed. It was a relief to feel that my bones were healing. Apparently Aredia is about 100 times stronger than Fosamax (alendronate), which I had been taking previously for osteopenia, or low bone density. Perhaps my bones would heal and my osteopenia would not worsen. Was it just the myeloma that was eating up my bones?
Dexamethasone, a cortico-steroid, is used to augment the response of another chemotherapy agent. The first thing I noticed about dexamethasone was that it helped me with my back pain. When I took it, the pain almost disappeared. When the effects wore off a couple of days later, I was stiff and sore again. However, I still needed to take Tylenol 3 (acetaminophen/paracetamol and codeine) tablets at night for pain.
The drug also affected my mood: I was generally high and energetic to the extreme while I was taking it and then crashed down to a low level of mood and energy when it wore off. The restlessness I experienced from taking it would keep me up at night. I felt like e-mailing people very late at night but I avoided doing this, since I didn’t want to set off too many alarm bells. Also, I suddenly had a great appetite and wanted to snack a lot. I had to limit the type of foods in the house at the time.
The third drug, Velcade, was the one that was supposed to take care of the myeloma. In our area, Velcade was approved for use in late 2008, less than a year before it was prescribed to me. .
On my first visit to the cancer center for intravenous treatment with Velcade, I was surprised to see the infusion room filled with so many patients. Later I learned that they were there for a variety of different cancers, not just multiple myeloma. Up to 70 different types of chemotherapies were available and administered there.
While I settled into a reclining chair, a nurse brought over a stand from which hung bags of a saline solution and Kytril (granisetron), a powerful anti-nauseant. After first heating up the skin with a hot wet washcloth, she inserted a needle into the back of my hand. I tried to focus on all the times I had had needles inserted as a blood donor to calm myself. Otherwise, I really felt out of my depth, taking such strong medicine.
The Kytril slowly dripped through the tubing, followed by the Velcade, which was injected into the IV line over a period of about 10 seconds, and the saline solution to finish. To my surprise, the whole procedure did not take very long. Unhooked and sporting a new bandaid, I was on my way home an hour later.
The first thing I noticed about Velcade was that it made me really tired.
So here I was feeling a wide array of different side effects: dex was jazzing me up and then casting me down, Velcade was tiring me out, and Aredia and dex were easing my back pain. It was a mixed bag of effects, and not a ‘normal’ time at all!
While I started the chemotherapy, our two daughters also informed themselves of the research and treatments and were always supportive.
Friends began to hear of my diagnosis, and we were flooded with calls, cards, visits, and bouquets of flowers, cookies, and meals - even a basket of delicious cheeses! Homemade soups from a neighbor were put into the freezer for ‘chemo’ days. My two sisters and my mom came in from their homes in British Columbia for visits. My brother and his family, including our two young nephews, appeared regularly to cheer up ‘Aunt Nancy,’ and my dad and my step-mom were always available for taking me to appointments.
Even with all the emotional and practical support and the reassurances that treatments were improved now for multiple myeloma patients, we were still very apprehensive. We hoped and prayed that the trio of treatments would be effective against the runaway myeloma.
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The quotation for this month is from Paracelsus (1493-1541), who wrote, "Since nothing is so secret or hidden that it cannot be revealed, everything depends on the discovery of those things that manifest the hidden."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon.
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URL to article: https://myelomabeacon.org/headline/2012/04/12/northern-lights-a-crash-course-in-multiple-myeloma-and-initial-chemotherapy/
URLs in this post:
[1] Aredia: https://myelomabeacon.org/tag/aredia/
[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone
[3] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
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