Northern Lights: Enjoying Life Without Treatment
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, 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.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Dear Nancy,
Isn't it nice to take a break from Revlimid and dex? But I am sorry that you had to endure breast cancer for the myeloma treatment break. You have a big decision to make. My fellow breast cancer survivors have discussed these choices, and all have taken a variety of paths. You also gave a lot of information for others to appreciate.
I'm glad you take us with you on your journey. Take your time making the decision, you deserve it.
Maureen
Thanks, Maureen, for your insight. Life can take us along paths we would not even have imagined, but I feel fortunate to have had really good health care, and to be well now! Hope you are feeling better this week also.
Nancy, I've been so out of the loop for the last few months that I missed your breast cancer diagnosis. I'm glad you came through that treatment well and are enjoying your drug holiday. Do what you need to do to stay healthy.
Enjoy the beginning of signs of warmer weather and Spring.
Nancy in Phila
Nancy, I appreciate your willingness to share your complex treatment decisions, but also the grace you continue to show during the course of your second cancer. Both show a generosity and philosophy that are inspirational. Best to you, whatever decision you make will be right. Thanks again, Debra
Nancy, thanks for your comment, and I hope you are doing well. I am sure it is not easy to have another blood cancer in addition to multiple myeloma. Take good care of yourself and enjoy the eastern early spring!
Thanks, Debra. I am shown a lot of kindness in return for writing columns! I was struck by some similarities in cancer treatments and thought that the readers might find that interesting.
Dear Nancy,
Your writings always inspire me. You truly set a standard with your courage and equanimity in the face of great. challenges.
I am so glad to hear that the evidence suggests you nipped the breast cancer in the bud, and at the same time your myeloma numbers remain stable as you continue to enjoy your treatment vacation. May the good news continue indefinitely, or at least until the heat death of the universe!
Thank you so much for generously sharing your journey with us with such eloquence and clarity.
Sincerely,
Robert
Nancy
There are other blood thinners not impacted by vitamin K like warfarin is. I have used Fragmin (dalteparin) for the past 3 years to keep the clots at bay. The reason for the switch was that I got a blood clot while on warfarin. I love my greens, so Fragmin is a better choice for me. It does involve daily injection.
Take care.
Thanks, Robert and Eric, for your nice comments! Honestly, Robert, I have other concerns in life besides cancer and am trying to live a normal life so that helps me to stay on an even keel.
Eric, I have heard of Fragmin. Right now am leaning towards taking aromatase inhibitors, since I am scared of blood clots and stroke. However, I have another consult with the medical oncologist before I decide for sure, with the help of my family (my husband and one daughter are doctors, and my other daughter is a registered nurse).
Hi Nancy! Great column, and I’m so glad everything is working out well for you on both the breast cancer and myeloma fronts. As you know, we are in similar situations. I am currently in complete remission after my stem cell transplant in April '16 and currently on no myeloma maintenance medication apart from monthly Aredia (pamidronate) infusions. I have now also been on the aromatase inhibitor, Femara (letrozole), for 14 months and am struggling a lot with this drug. I hate it! I can live with the hot flashes. However, I also have constant joint and muscle pain, which is one of the main side effects of Femara. I’ve also developed high cholesterol from Femara– which is another of its unpleasant side effects. I have no risk factors for high cholesterol (good diet, regular exercise, non-smoker, no family history etc.), and yet I developed high cholesterol since starting this drug. I will probably do a test month without Femara to see if my unpleasant side effects recede. If they do, then I’ll have a difficult decision to make on whether or not to continue with this drug. I wish you all the best as you make further treatment decisions. Karen
Great to hear that you have had a holiday from myeloma treatments and that things are stable. I hope that can continue for a long, long time.
Best wishes!
After my breast cancer treatment in 2003, I took an aromatase inhibitor - Arimidex (anastrozole). At that time, they were new. I did not have side effects that I remember. I was pleased with this one.
Our prayers are with you, Nancy. So happy you got through the radiation treatments. Enjoy this brief respite without drugs and good luck with your decision on when and what to start. We really appreciate you sharing your story and keeping us up-to-date.
Thanks so much for the comments!
Karen, sorry to hear about the side effects of letrozole that you have experienced. Interesting that Joyce was alright with a astrozole. I will certainly ask the specialist about those drugs.
Ron, hope you are recovering well from your accident and doing well on new treatments.
Patty, hope your husband is doing well.
Nancy, I was diagnosed in 2010 and have been involved with two clinical trials. I attained a partial remission on Revlimid that lasted nearly four years. Velcade lasted less than one year. I was on Cytoxan, Pomalyst and dex for the past nine months. My numbers have continued to decline, and recently my oncologist removed the Cytoxan from the regimen.
I have been so inspired by your writings that are informative and inspiring. You demonstrate outstanding courage battling two cancers at the same time and give so many of us "hope for the journey."
Good luck on your journey too, Joanne! It's nice that you could drop a drug from your mix of meds. Hope the Pomalyst plus dex works well. Our hope for the journey is something we all have in common!
Hi Nancy,
I too have just finished being treated for breast cancer, so I read your column with great interest.
My multiple myeloma was diagnosed in May 2016 and DCIS in August. I had a stem cell transplant in October and then a lumpectomy in November. I had to go back for a second surgery in December to check lymph nodes, since the cancer was actually stage 1. I finished 21 sessions of radiation at the end of February. Like you, I am EP positive, and my oncologist wanted to put me on a 5-year course of the hormone inhibitor letrozole. While I am in remission from my myeloma, I am not keen to take another drug that can compromise my quality of life. Furthermore, my hematologist says I can't be on both Revlimid and letrozole at the same time, since they pose similar risks. He expects my high-risk myeloma to require the Revlimid well before 5 years. My medical oncologist eventually agreed to do testing analyzes my risk of recurrence because I agreed to take the follow-on drugs only if I had a medium or high risk of recurrence. Fortunately, my estimated risk of recurrence came back low, so I have chosen not to take anything. So now I will enjoy being drug free for a while.
Thanks, Susan. It looks like we had really similar treatments for the breast cancer. I also had to have two surgeries as you did and 20 sessions of radiation. I found the radiation to be tiring and it was a few weeks before my energy returned fully after that. The surgeries also took some time to heal from afterwards. Thanks for explaining how you came to the decision not to take an aromatase inhibitor at this time. Hope your remission from myeloma lasts for a long time!
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