Northern Lights: Coping With Treatment Again
It has been a busy autumn for me, both at home and away travelling. My husband Dilip and I went to Scotland for a holiday in October. Visiting there had been on my wish list all my life, since I have Scottish heritage, played bagpipes in a pipe band, and my maternal grandmother lived in Glasgow when I was a child. She always sent my siblings and me gifts from there, as well as books and postcards featuring castles and historical stories.
Dilip and I toured around Scotland by train, visiting Glasgow, Stirling, Loch Lomond, Inverness, the Kyle of Localsh, and Edinburgh. It was a wonderful time, and we also had the opportunity to meet fellow Beacon columnist Marjorie Smith and her husband. It was so nice to experience real highland hospitality.
I was very glad that we were able to take the trip to Scotland since I went back onto a low level of myeloma treatments upon our return home. Although my M-spike was still quite low, my oncologist and I could not help but notice that it was steadily climbing again. So in November I accepted the idea of going back onto Revlimid (lenalidomide) plus dexamethasone (Decadron), the same treatment I was on before my treatment holiday began two years ago. I started up on 10 mg of Revlimid, 21 days out of 28, and 10 mg of dex weekly. This is a lower dose than what I left off with over two years ago, but we hope it will be enough to reverse the trend of rising blood counts.
So far, I am adjusting to being back on myeloma medications. I had such a busy time lately that I didn’t have much time to rest up and mostly tried to ignore the side effects of the drugs.
However, I found I have had to start taking supportive treatments again, such as help for the gastrointestinal issues that Revlimid causes, and a sleep aid for the dexamethasone. I’m noticing that I’m more tired and even confused at times. The dexamethasone again causes me to be talkative, and I am trying to be mindful about it and even curtail it. It seemed like every time I got on an airplane I was sitting near someone else who had quite a story to tell about their medical problems, since I also was willing to talk with them about my issues!
Soon after I started treatment, I took two short trips, one to the Toronto area, and another to Vancouver Island and Vancouver. I had to manage plane travel on my own, which was a bit challenging. I don’t like to have to lift carry-on luggage into the overhead bins, so I just took on two tote bags to stuff under the seat in front of me on both trips, and I checked one bag.
I enjoyed both trips very much, although I could tell that I was on treatment again. On both trips, I felt quite tired and ill from getting back on the medications.
It was an exciting time this autumn, but I am glad to be back home again and am trying to get caught up around here.
As many have noted on the Beacon, the day or two after taking dex is a good time to get chores and physical work done around the house, since it seems to increase energy levels. So in November I helped Dilip to clean our outdoor windows, and we put up our outdoor holiday lights early. I also sorted through clothes and cleaned out closets in an effort to downsize a bit. I have also pulled out many stitching projects to work on, and I've started reading several books, although I haven’t focused well enough to finish them up in an orderly fashion.
I realize that I can get a little confused when taking strong myeloma medications. However, sometimes just getting outdoors for a peaceful walk brings everything together and helps me to sort out my day.
Being on treatment again brought the myeloma a bit more to the forefront in my life again. I nevertheless try not to worry too much. Myeloma being what it is, at best a long chronic illness, I have had to develop coping mechanisms in order not to get upset about that. Usually my life is busy enough to make me forget my troubles anyways. I have become used to having myeloma, living with it, and hoping for the best in the future.
Nowadays, singing with my choir and just listening to the songs of the season are enough to lift my spirits. I have managed to sing in a few concerts with the choir, which was reassuring to me, but I need to cut back on commitments for a while until I get used to this new drug regimen.
After only one cycle of the regimen, my M-spike fell to a level of where it was last July, and the kappa levels and the kappa-lambda ratio subsided as well and are in a normal range. These encouraging results will help me to get through the next months in a positive frame of mind.
I am wishing all readers a joyous holiday season and hope that peace fills your lives for this special time of year. I hope that you have the time just to stop and enjoy the beauty of the season, to take time for yourselves, and to enjoy spending time with family and friends.
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The quotation for this month is from Kakuzo Okakura (1862 - 1913), a Japanese scholar, who said: "The art of life lies in a constant readjustment to our surrounding."
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 .
Related Articles:
- Northern Lights: Trying To Make Plans In Advance
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: Starting Treatment With Darzalex
Dear Nancy,
Please take care. You have such a positive spirit despite coming back on treatment. The thought of this disease itself scares me enough. Wish you peaceful days ahead.
Nisha
Hello Nancy. Thank you for an encouraging article for several reasons. First, your return to Revlimid and dexamethasone resolved your rising M-spike. This is good news that while your myeloma returned it still responds to treatment. My husband is on a similar regimen, but his includes Empliciti (elotuzumab). Like you, he can be a little forgetful, but he now writes down everything on his calendar to help him remember appointments and other important information. The second reason your article is so hopeful is the fact that you are still able to do so much, including traveling all the way to Scotland. It sounded like a fabulous trip. My husband’s family also came from Scotland. We have been there twice and have loved every moment. We wish you well in returning to treatment and pray that you and Dilip have a wonderful holiday season.
Dear Nancy, I was sorry to hear that you’re back on treatment. Bad luck. You are so brave and inspiring, it helps the rest of us to keep hopeful and looking forward. I’m also delighted that you had your Scottish holiday! Precious, precious moments. I hope that the side effects don’t interfere too much with the Christmas period. Every best wish.
So glad to hear you were able to travel. I would love to see Scotland one day! I'm not on dex but wonder if I have some mild confusion problems because of Revlimid. I already have gut issues because of it. Take care!
Dear Nancy,
I hope going back on treatment proves effective and that those side effects settle down quickly. Having multiple myeloma is a challenge for everyone, and you have set such a good example in managing to get on with your life.
Than you for sharing your experiences in your wonderful columns!
Merry Christmas to you and your family, and may 2019 bring continued health and happiness.
Thanks everyone for the kind comments! It means a lot to me to have such supportive readers and friends. The trip to Scotland was really special, and I knew I might have to try treatment again when I got back home. I don't know if I could have managed that trip right now, since we did a lot of travelling by train and bus.
When I relapsed before in 2014, it took a long time to get the blood counts down to a normal range, so I am hoping that this treatment will work more quickly. Then I might be able just to go onto a maintenance dose. Already I am finding that the dosage of Revlimid and dex that I am on, which is about half what I took before, is easier to tolerate! I still have problems with being on dex and also with the gastrointestinal problems of Revlimid, but my doctors are helping me to sort those out. I am feeling better now than I did in the last few weeks.
Happy holidays to everyone, hope you all have a chance to relax and enjoy yourselves.
Dear Nancy,
I hope that the current treatment goes well for you. Thank you for telling how you adjust to side effects to lead a fulfilling life. Your positive attitude is a great example. Best to you in the new year.
Thanks Sylvia! I hope that you are doing well also. I feel fortunate to be able to juggle my time and energies to do what is important to me, for the most part. Happy New Year, 2019!
Dear Nancy,
I am so sorry to hear that you're back on Revlimid and dex. It sounds like you've received great results from the first cycle, however! I hope these great results continue and you're able to tolerate the symptoms well. Hang in there, friend!
Nancy, I can relate. The difference is that I never have been off of treatment in almost 10 years. I am on RVD now with the same 10 mg of Revlimid you have but 20 mg of dex per week. I get my Velcade shot on Wednesdays and take my dex the same day. I find that taking the Revlimid and dex just before I go to bed works best. You get the first night of sleep in. Am "up" on Thursday, and it wears off the second half of Friday. So only one night of sleeplessness - Thursday. Then I am ready to do a 60-mile bike ride on Saturday and even a 40-mile on Sunday!
We are planning a big Christmas choir service at midnight on Christmas Eve (I am Catholic so it's midnight mass). We are doing some songs by Mozart and Handel during the service and a 20-minute concerto before the service. I am in the bass section.
Have a Merry Christmas!
Thanks Nancy. I always enjoy your columns. I wish you and Dilip a wonderful Christmas season and I hope you continue to live life so well and keep the myeloma at bay.
I lost my mother this past summer, and my wife recently lost her father. Both of our parents lived long and happy lives. I never shared the news of my multiple myeloma with my mother or my wife's father because I didn't want to sadden them in their final years. So this Christmas is our first without them, but we will treasure our memories of them and enter a new phase in our lives. You always set such a positive example of how to live with myeloma, and I try hard to duplicate that.
Have a merry Christmas.
Thank you, Tabitha! Compared to many myeloma patients, my problems are quite mild, but it is still an adjustment to get used to low doses of dex and Revlimid again. In the last nine years, this is the third time for each of these drugs. I should be an 'old hand' by now, but am still trying to juggle so that I can live a (new) normal life while taking meds. Good luck to you and Daniel, and have a nice holiday season!
Ron, nice to hear from you and thanks for describing your life as a singer! The midnight mass sounds very lovely. My choir season just finished up here, with a seasonal concert last weekend (with 400 in the audience) and then a performance at our new public library last evening. We also have performed at retirement residences as usual. The people who live there don't get out much to concerts and always express appreciation that we sing for them. I am convinced that singing is good for the health, focussing as it does on breathing and sort of meditation.
I really don't know how you cope with being on meds non-stop for nearly a decade, but good luck and hope that you and your family have a great holiday season.
Sometimes I take dex at night and sometimes in the morning, weekly. It mostly depends on how busy I am. I don't like driving when the dex is affecting me, for about two days. This I remember from the last time I took the drug.
Colin, I am so sorry to hear that you lost your mother and that your wife lost her father in 2018. It is good that you spared them the worry of how you have had myeloma. In my case, my diagnosis was so dramatic that everyone around me know about it. My parents are in their 90's now and are good role models for our family. I am glad that you like to read my columns.
Hi Nancy, I enjoyed reading your post and so pleased to hear of your positive results. My husband was diagnosed in March and had 6 months of VTD and gets his transplant in two days. It’s nice to hear of your connection to Scotland. We live just outside Glasgow and sometimes get fed up with the grey skies and drizzle and damp, but lovely to hear someone else’s appreciation and reminds me that the grass isn’t greener on the other side. Ahhh, to be content!
Anyhow, great to hear of the positive results especially when our myeloma journey is just beginning (naively thought it ended after the VTD) and slightly anxious with what’s ahead after his transplant on Thursday. He is making it very easy though and is very upbeat and positive, in fact he’s getting our ten-year-old daughter to help clip his hair tomorrow to help her feel involved.
Happy singing.
Thanks, Suzanne, for the kind thoughts and I hope that your husband goes through the transplant process without problems. At least you will be able to enjoy spring, having had this major treatment done. I also was naive at the start of my myeloma journey and after induction therapy thought I was cured!
We enjoyed starting our trip to Scotland in Glasgow, since our flight was direct to there from Halifax. The River Clyde was full of reflections from bridges, we saw the Museum of Modern Art, and enjoyed walking on the pedestrian malls. The bagpipers were busking there played all my favourite tunes that I had learned from age ten onwards. We took side trips on the train to Loch Lomond and to Stirling, to see the Castle there. We had sung 'Loch Lomond' at my choir's spring concert this year, and I think that is what finally got me going on a trip to your country! I asked a piper to play 'Skye Boat Song,' and later we went to the Kyle of Locaish, where we could see the Isle of Skye. So from a musical point of view, it was special too.
Happy New Year!
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