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Northern Lights: Enjoying Life Without Treatment
By: Nancy Shamanna; Published: March 8, 2017 @ 2:19 pm | Comments Disabled
We are seeing the first signs of spring here at the foothills of the Canadian Rockies, and somehow the change in seasons reminded me that I haven't taken any multiple myeloma treatments for six months now. I was going through treatments for breast cancer last fall, and my oncologist therefore thought it would be helpful to give me a break from my myeloma treatments during that time.
Fortunately, everything has worked out well thus far. The breast cancer was caught early, and there was no sign of it having gotten into the lymph nodes outside the surgical area. The 20 radiation treatments I received in December and January were meant to destroy any remaining cancer cells.
During all this time, my blood counts, including my serum free light chain levels, have stayed in the normal ranges. My monoclonal protein level (M-spike) has not increased since I stopped treatment with Revlimid and dexamethasone last fall. It has hovered around 0.1 g/dL (1.0 g/l), which is where it was when I was on treatment.
So given this encouraging news, I am still enjoying a break from treatment. I am to check in with my hematologist if I have any unusual symptoms, such as aches and pains that persist, or if plasmacytomas develop. In my world, persistent or worsening pain would mean getting a PET scan to check for progression of the disease.
I did experience some stiffness this winter, but perhaps it was just due to walking around outdoors in the cold weather, or from having to remain still on a steel table during the radiation treatments. Maybe even not being on dexamethasone has caused the stiffness from old injuries to recur. At any rate, just taking Tylenol (acetaminophen, paracetamol), using topical Voltaren (diclofenac), and walking less seems to have helped a lot.
It is really nice to be away from any treatments for the time being. My energy is returning, and I am working better and not making as many mistakes either. I am trying to stay fit and to ease any aches and pains, not only with medications, but with gentle stretches and yoga, which is definitely helping me.
My husband and I are planning family vacations, and I am trying to get my house really better organized. Over the last year, due to being on Revlimid plus dex until September, and then going through the breast cancer treatments after that, I let things slide. I would like to be better organized to make my life easier now. I also have a lot of interesting quilting, knitting, and needlework projects to work on that I couldn’t find time for previously.
I hope that the multiple myeloma stays at a very low level for months to come. However, my drug-free holiday probably won’t last too much longer, since I am considering what treatments to take next for the breast cancer.
The type of breast cancer I had was tested and determined to be the estrogen-receptor type, which means that it could be fueled by estrogen. In order to decrease the chances of the breast cancer recurring, medications are used that inhibit the production of estrogen. There are two type of drugs used – selective estrogen-receptor modulators, such as tamoxifen (Nolvadex), and aromatase inhibitors. Both are effective, but they have differing side effects. By now, from my myeloma journey, I am quite familiar with side effects! What I learned about the two types of estrogen-inhibiting drugs reminded me of some aspects of multiple myeloma and its treatments.
Tamoxifen can cause blood clots, which also is a potential side effect of Revlimid and multiple myeloma itself. If I took tamoxifen, I would have to take the blood thinner Coumadin (warfarin), which is stronger than the low-dose aspirin I am taking now to prevent blood clots. As fellow columnist April Nelson described in one of her recent columns [1], I would have to monitor my vitamin K intake and have regular INR tests.
The aromatase inhibitors may cause bone thinning (osteopenia) or worse. I already have osteopenia, which was caused by the myeloma cells attacking my bones, to the point where I had fractures and many lytic lesions. If I were to take aromatase inhibitors to decrease the production of estrogen, I would need to take a bisphosphonate again. Probably in this case it would be Zometa (zoledronic acid), whereas previously I had about 24 treatments of Aredia (pamidronate).
At first I balked at the idea of taking any drugs with the side effects of blood clotting or bone thinning. My medical oncologist said I did not have to decide on this right away, though, since it is not an urgent situation. She said that many breast cancer patients take both tamoxifen and aromatase inhibitors, sequentially, over five years.
My first thought was that I would be really happy to survive multiple myeloma for another five years, let alone breast cancer! That is the mindset that having two cancers can do to you I suppose. But after thinking this situation over, I would not want to go through surgery plus radiation for breast cancer again if possible. So I will probably try another treatment, but I still have not made up my mind as to which one.
Despite the upcoming breast cancer treatment, I’m hoping to have a good year.
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The quotation for this month is from the American writer, humorist, entrepreneur, publisher, and lecturer Samuel Langhorne Clemens (1835 - 1910), better known by his pen name Mark Twain, who said: "I must have a prodigious amount of mind; it takes me as much as a week, sometimes, to make it up!"
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here [2].
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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[1] columns: https://myelomabeacon.org/headline/2016/12/28/letters-from-cancerland-its-not-easy-being-green/
[2] here: https://myelomabeacon.org/author/nancy-shamanna/
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