Northern Lights: Trying To Make Plans In Advance
A while ago, while tidying up the medicine cabinet, I came across an unused portion of Revlimid capsules and some dexamethasone pills. The Revlimid, just three capsules, had expired. Of course my husband and I returned the unused medications to a hospital pharmacy for proper disposal.
It was startling to me to realize that these unused medications were still there. I mused over how Revlimid and dex had helped get me back into remission after a relapse four years ago. I might still be taking Revlimid if it were not for a secondary cancer intervening two years ago. I stopped taking myeloma drugs at that point in order to get treatment for the other cancer, and I still haven’t returned to taking them.
That does not mean that I think I am done with myeloma treatments. I think that the nature of the disease is that I will relapse again, and I watch my blood tests closely every month for signs of that. If I were to need more treatment, I am not sure what form it would take. Pills? Infusions? Subcutaenous injections? Will I need to go to a treatment center on a weekly basis, or will I be able to just take pills? Will I be in a desperate fight for survival, or just go back to some sort of ongoing drug treatment?
These thoughts came to the forefront when I returned to the fall season of my wonderful choir here in Calgary. It will be the 40th season of the choir in 2019, and it has been accepted to perform at a music festival in St. John, New Brunswick. Choir members needed to sign on for that by the end of September. I have traveled before with the choir on trips to Comox, British Columbia in 2015 and to Ottawa, Ontario in 2005. But before I could sign up for this trip, I had to think about what it would be like if I were to be back on myeloma treatments.
As it stands right now, I am below the levels of monoclonal proteins and serum free light chains that would constitute a relapse. However, my counts seem to be rising slightly. At an M-spike of 0.34 g/dL (3.4 g/l) and a free light chain ratio of 1.7, I am glad to be living with a low level of the disease.
But when I looked back at my lab results before my relapse in 2014, I found the following trend:
When I relapsed from myeloma the first time in 2014, my M-spike went from 0.33 g/dL (3.3 g/l) in August 2013 to 0.48 g/dL (4.8 g/l) in June 2014, to 1.05 g/dL (10.5 g/l) in September. That is when I went onto 25 mg of Revlimid (21 days out of 28), and 20 mg of dex (weekly). So in retrospect, it took 11 months from August to the following September to get into a full relapse.
If my disease were to follow the same timelines as the last time, I would be in a full relapse by the end of next summer. That is too close to the time when the choral festival is going on. Of course, I don't know for sure if that will happen, but I don't want to feel obligated to go to an important event if I am not feeling well or am on treatment again.
It is difficult for me to project more into the future than about three months at a time right now. Anything I sign up for has to be cancelable. Plus I feel it is not fair to the organizers of an event like a choral festival to sign up unless I am pretty sure I can go.
After giving it ample thought, I decided that attending a four-day festival of intense musical activity next summer is out of reach for me. It was a disappointment to me to come to this conclusion, but I realize it's better for me to just stick to my normal routines to stay healthy. I have been to other festivals and performed a lot in the past with the choir, so maybe it is time for me to slow down a bit. I will still try to perform in our concerts in Calgary. At those concerts, even one long day of rehearsing and singing on risers makes my feet so numb I can barely walk, so I think that tells me something too.
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The quotation for this month is from Israelmore Ayivor (1989 - ), a writer from Ghana, who said: "Don’t live life anyhow, else you get anywhere. Plan your life somehow and you can get somewhere. A slow plan is better than no plan."
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 .
Nancy, you are being so very thoughtful about this. I commend you. I hope your relapse will be farther in the future than you now project, but it's certainly sensible to plan ahead in ways that make you comfortable. Always, always take care of yourself. Very much appreciate your columns.
Dear Nancy, I enjoyed reading your column, and your thoughts about planning ahead are very much in line with the way I think nowadays. I hope that your relapse is super slow and that you can enjoy many small trips and unexpected pleasures!
Nancy, I understand the whole weighing / evaluating / assessing process you went through. I admire your thoughtful approach.
I wonder how anyone signs up long in advance for events, but with us it is more tricky and we often decline, like the glorious river trip to Portugal in September 2019 that I decided not to do, with too many "if's" in the coming year. After 10 years of many cocktails, I got to "remission" with Empliciti, Pomalyst, and dexamethasone since February and am kept on a 2-week schedule at the treatment center. Then days of recovery. Can't plan much except the daily health cares. I completely understand what you wrote. Wonderful that you sing.
Hi Nancy. I hope you are free from another relapse for some time yet. As you know, I am a little less than 2 years from my diagnosis. I recently took a trip to Spain for 2 weeks. I never gave a relapse a second thought, however, I did have to take a vacation from Revlimid about a month prior to the trip, due to an allergic full-body rash. I am not sure if and when I will be back on maintenance. These events are reminders that one can't get too comfortable just because the blood tests look good. I guess the patterns and signs for relapse are variable for each of us. You are wise to consider your past performances. Best of luck and fun with your continued singing in the choir.
This is my tenth year since I was diagnosed and I have been in treatment for most of this time. In August, my numbers were stable and my doctor scheduled the treatments so we could be gone to the Finger Lakes of New York for two weeks. I came back refreshed and thinking positive. Last week, the M-spike and IgG all indicated they are on the rise again. Will now have two infusions of Darzalex monthly in addition to the Pomalyst and dexamethasone.
Never get too comfortable with myeloma.
Happy Canadian Thanksgiving to all! This is such a special holiday since it emphasizes gratitude, and thankfulness for our blessings in life. And thanks for the interesting comments!
Linda, I am lucky that I could think out loud in this column about going to a choir festival 10 months away. In conclusion, I had too much doubt about that, and couldn't plan it. But I do other interesting travels, especially with Dilip, so am not unhappy about this really. I just realized I couldn't plan ahead like I was able to do before I had myeloma.
Marjorie, thank you very much for your comment. I'm also hoping that there will be many small trips and unexpected pleasures on my future.
April, I am flattered that you admire my approach! It seems to me that in your work you routinely help people to sort out their problems in life, especially young people who may need that help. I just muddle along and try to consider all the variables I am working with. At least I have not had to quit the choir! I left off playing with the pipe band in 2009, since I was injured and sick, and did miss that camaraderie.
Suzanne, I don't know either how people can plan far into the future, but they do. I guess the best approach is to check what the cancellation fees would be for any future trip. But on the wider picture, what happens if there is a hurricane, or political unrest or any other of the unfortunate things that can happen which are not known to us? It's not as if we have crystal balls to look into! Good luck with your health and hope you can do interesting things on your recovery days too.
Colin, nice to hear from you and hope you are enjoying your retirement on Vancouver Island. Sorry to hear about the Revlimid rash, but rest easy in knowing that many people have discontinued taking drugs for one reason or the other and sometimes that works out well too. I have been lucky to enjoy more than five years with no drugs for myeloma since 2009, but that was not predictable.
Joan , that is nice that your doctor is amenable to rescheduling your treatments so that you can get a break and take a vacation. I hope that the Darzalex, plus Pomalyst and dex work to put the myeloma markers into remission. Good luck with everything!