Northern Lights: Celebrating A Decade Since Diagnosis
It’s summer here in Calgary, and sunshine and showers are alternating. Everything is green, and the gardens are a joy to behold. It’s not too warm; in fact, our daytime high temperatures on the colder days have been only 52 degrees Fahrenheit (11 degrees Celsius).
This is good weather for walking, and my husband and I got out cycling on Canada Day, July 1. We went along the Bow River pathway for a few miles, and really enjoyed seeing nature there. We saw ospreys in a nest on a platform, geese and ducks paddling on the river, and gulls circling on thermal wind drafts. What a lovely way to get some exercise!
This month is full of birthdays and anniversaries in our family. It is the busiest month of the year that way. My husband and I are celebrating our 42nd anniversary this month. I cannot forget, however, July of 2009, when my whole world crashed down around me and I spent that month and August mostly indoors, recovering from back fractures, and starting treatments for multiple myeloma. To be a whole decade on from that summer seems like a miracle to me now!
If I could back up a little to the months preceding my diagnosis, some strange things were happening to me that I did not understand. Being diagnosed in 2008 for osteopenia at the relatively young age of 57, and taking a low level of the bisphosphonate Fosamax (alendronate) for that, was my first indication that I wasn’t very healthy. Then, aches and pains in my ribs and back intensified, and I had low back pain that would not improve with analgesics or muscle relaxants. Eventually my vertebrae started to compress.
I remember marching in a parade, playing bagpipes, in early June when I felt something give away in my mid back area. Then, as the month wore on, pain got worse in my lower back. My family doctor did not put the facts together to suspect multiple myeloma. She was very conscientious in testing me for other cancers, such as breast, colon, and melanoma, though. It was through having a general check up that we discovered the osteopenia, so I was on some early treatment against bone damage.
Eventually, over the July 1 to July 4 long weekend in 2009, I just collapsed in terrible pain and could not get up on my own. This of course set off alarm bells as to what was the matter with me. My husband, a family doctor, and one of my daughters, a medical student, tried to help me. My daughter exclaimed in a Eureka moment: "There are some blood tests that Mom needs to have!" She had been studying bone health at medical school and recognized that this could be multiple myeloma. So we rushed to get those tests done and get an appointment with a hematologist. Sure enough, it was multiple myeloma, and my new oncologist immediately started me on a different bisphosphonate treatment, Aredia (pamidronate), after confirming the diagnosis with skeletal X-rays and a bone marrow biopsy. I was scheduled to start induction therapy in August.
I was confused and depressed about this turn of events. At that time, from everything we read, the prognosis for multiple myeloma was quite poor; survival seemed to be measured in months, not years. My family and friends rallied around me and did their best to cheer me up.
In the autumn of that year, I had four cycles of Velcade (bortezomib) plus dexamethasone. I struggled with side effects from the treatments; I experienced sleep deprivation, gastrointestinal problems, and changes in appetite at that time. Gradually I realized that if the drugs I was taking were strong enough to kill the myeloma cancer cells, then they could have strong side effects also. After that, with all of my subsequent treatments, I braced myself for side effects and came to accept them as part of my cancer journey.
Later in the fall, I was prepared to receive an autologous stem cell transplant. I was scared and it took all my courage to sign on for that. I could barely imagine having my bone marrow destroyed and then re-populated with my own stem cells. However, it was a highly recommended procedure, and many patients went through with it, so eventually I decided to do it. The stem cell harvest went well, although I lost my hair from the cyclophosphamide and also suffered pain in my bones as the medications to boost stem cell production took hold. A day in the apheresis unit yielded enough stem cells for two transplants, although I have only had one.
In January 2010, after a break for Christmas (when I sported my new wig!), I had the transplant. My stem cells, which had been frozen in liquid nitrogen, were thawed and reinfused through the catheter in my chest. Comparing my transplant experience with those of other patients, I think mine was average. I was neither so ill that I stayed in the hospital for a long time, or so well that I had no problems. The main problem I had was diarrhea that was so severe I was put in an isolation ward in the hospital for two days to be tested for a em>C. difficile infection. Fortunately, that turned out to be negative, and the problem was thought to be a side effect of the Neupogen used to boost my blood counts right after the transplant.
I recovered after three months, and 100 days post transplant, my catheter was removed. Since I was still not in a complete remission, I took Revlimid (lenalidomide) at a low dose for about a year after that, which put me into a complete remission.
From 2011 to early 2014, I didn’t take any myeloma medications. It was a carefree time for me and my husband, full of activities and adventures.
In the spring of 2014, I started to relapse, slowly but surely. In October 2014, I started treatment again, on the highest dose of Revlimid (25 mg), in combination with 20 mg of dexamethasone per week. I was more careful this time to try to control the side effects of those drugs. I responded well to the treatment, and once again I got very close to a complete remission.
In the meanwhile, I continued to have annual checkups with my family physician. In 2016, I had a feeling that I should have an annual mammogram, not a bi-annual one, since studies showed that there is a higher than average rate of cancer caused by taking Revlimid. My doctor kindly obliged me, and the mammogram showed signs of breast cancer. Since I would now be treated for this secondary cancer with surgery and radiation, my oncologist suggested I go off of myeloma treatments for the time being. This proved wise, since the treatments for the breast cancer were quite intense.
To my surprise, the myeloma did not come back quickly. It was not until last fall, November 2018, that my M-spike started to increase, although at a slow pace. So, once again, I started treatment with Revlimid and dex at a low level (10 mg of Revlimid, 21 days out of 28, plus 10 mg of dex weekly). I wasn’t really very happy with this development, but it shows how difficult it is to completely shake off myeloma. I stayed on with that treatment until January of this year. After discussions with my doctors, I decided to try going off treatment again. When and if I fully relapse, I may be able to try one of the new myeloma drugs that have recently been funded here. Just to be safe, I am checked monthly, in case the myeloma starts to really take off on me again.
Right now, I am in a hiatus, another break in the seemingly unending treatments for myeloma. To have had this six months off of treatment has given me a chance to regain my energy. Over the last ten years, I have been off of treatments about half of the time, and I am very grateful for that.
I also am grateful, of course, for the treatments I have received that have made it possible for me to be here ten years after my diagnosis.
It seems I have plenty to celebrate this month.
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The quotation for this month is from Lil Xan (1996 - ), American rapper, singer, and songwriter, who said: "It gets better: there's a light at the end of the tunnel. It may take one day, it may take ten years. But one day, you will find happiness if you manifest it. Put that energy out, and it'll come back."
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: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: Being An Efficient Patient
- Northern Lights: Coping With Treatment Again
Dear Nancy – Thanks so much for continuing to tell your story and share your insights. I find it so interesting to hear about the way you are managing the disease, and I wish you well. Enjoy the summer sunshine.
Dear Nancy – You have been through so much! Thank you for sharing your story on your anniversary as well as all the other columns you have written over the years. Your positive attitude is an inspiration to all of us. Battling multiple myeloma is one thing, but to have also fought breast cancer at the same time is almost beyond comprehension. Unlike you, my husband has never had a hiatus from treatment for his myeloma, even though we have talked about it. His oncologist thinks he is too high risk to chance it. Hopefully it will be a very long time before you get to try one of the new drugs used to treat multiple myeloma. My husband still takes the Revlimid but also has a once per month infusion of Empliciti (elotuzumab) and remains MRD negative. He can only dream of a brief hiatus.
Dear Marjorie, Thanks for your comment. Summer here has been cool and quite rainy, which is way different from last year when it was too hot and smoky from forest fire smoke drifting in. But it's only mid-July so we still have some summer left! Dilip and I went on a hike above treeline last week at 8000 ft. I know now what is meant by 'everyone's journey is different', and I hope you are well and enjoying Scottish summer too!
Dear Patty, I am sorry that your husband is high risk and must adhere to a medication schedule. I hope that is tolerable for him and for you also, as the caregiver. We are fortunate to be still doing alright.
Congratulations on your milestone!
Dear Nancy,
I have to echo what Patty said about how much you have endured. I truly admire your courage, and I hope that your persistent triumph over myeloma is matched by a decisive victory over breast cancer.
I wish you happiness and continued good health. Your columns are inspirational!
Your Revlimid-dex results are impressive. Glad to hear you are back off treatment.
David
I enjoyed reading your story, Nancy! You’ve persevered through everything and always keep doing positive things.
Congratulations on ten years, and I hope you have many more.
Dear April, Robert, David and Susan, Thank you for you nice comments! I am wishing all of you the best also as we travel on with our lives. Having multiple myeloma is always there for us patients, and I wouldn't want to give up being checked for it regularly. In fact, I think I will be back on treatments before too long! I just enjoy the rest of my life so much that I am willing to have treatments.
Thanks, Nancy, for an interesting history. I too am a 10-year plus survivor. My course however never included a stem cell transplant or a break from treatment. With me it was induction with RVD (dex 40 mg once a week), weekly Velcade (first infusion then later a subcutaneous shot) and 10 mg of Revlimid (on 21 days off 7). I also was started on monthly infusions of Aredia.
I did respond quickly and after about 6 months the protocol was slowly backed down. I did have a bout of C-Diff and meningitis (simultaneously) in 2012, which caused me to suffer expressive aphasia due to the brain swelling. I was hospitalized for 4 days. The result was my oncologist took me off the Revlimid and started me on IVIG infusions once a month. The side effects and myeloma had made me vulnerable to infection.
I had reached a complete response and had held it for 6 years. At its lowest, my protocol was Velcade once every 2 weeks along with 4 mg of dex. Aredia once every 3 months and monthly IVIG.
I had open heart surgery in 2014 due to stenosis in my aortic heart valve, which was replaced with t bovine valve. I suffered a broken neck (fused C-2 through C-5) due to a biking accident. I recovered rapidly from both of those and did not have any problems with my bones healing.
I started a slow relapse at the end of 2016, the result being the protocol was slowly increased. First reintroducing Revlimid at 5 mg and increasing the dex from 4 to 20 mg a week. Now I am almost at my original induction levels of RVD. Back to 10 mg of Revlimid on 21 off 7, weekly Velcade and 20 mg of dex. The Aredia remains at once every 3 months and I still get monthly IVIG infusions. Sounds like a lot but I cope and still work full time. I am at over 3,300 miles on my bike so far this year and have an 80-mile ride planned for Saturday. I got a treatment on Wednesday and will lay off the bike today and Friday and should be good to go Saturday at 6:30 am.
We all learn to cope. I fully expect that the protocol will change again before the year is out and a monoclonal antibody will be added in or substituted for the Velcade, which I have taken continuously. I am grateful that my myeloma has not reacted aggressively and I have not developed any new clones.
We all have different experiences. Our journeys are all about adaptation and coping.
Congratulations on reaching a ten-year anniversary, Ron! I hope you have many more years too, and not as eventful with health issues as the first ten. You are such a good example of someone who has persevered with the myeloma, and yet has found time to encourage others in your chosen sport of cycling!
Thank you, Nancy, for your column and congratulations to you and your family on your anniversaries. And thank you for sharing your story of perseverance with honesty about both the difficulties and the successes. Your strength and the love your family shows shines through.
I am in the 9th year of high-risk smoldering myeloma and am apparently moving toward treatment. I have viewed treatment as a high wall - without a window - and limitations on everything on the other side. Your perspective is greatly appreciated.
Also congratulations on being in Calgary - since today it is supposed to reach the high 90's here in RI and will be steamy. My solution - jump in the little yellow kayak early and paddle around in the salt ponds. There are often ospreys on the pond out for breakfast and I hope I will see some this morning.
Cheers!
You are welcome, Susan, and glad you could feel a bit easier about the future from learning about long-term myeloma patients, such as myself. Compared to 20 or even 10 years ago, there are more treatments available and hopefully your myeloma can be targeted with good drugs if you need that.
I am not sure you would have liked the weather here yesterday, as it was 10 C (50 F), and pouring rain in the morning! I was glad to spend the day indoors. We went to Misquamicut Beach, R.I., many years ago when we were visiting relatives in Connecticut. I thought that Rhode Island was really lovely, but am sorry to read about this heat wave that is affecting a large area of eastern North America right now.
Hi Nancy.
Congrats on your first 10 year anniversary. I myself am in those good years you referred to as I am off all cancer medication. I am very much enjoying road cycling this summer. I have backed off on running due to recurring injuries.
Anyway, it was great to read your column. Take care.
Happy 42nd Anniversary!! That is awesome. I wish you all the best of health and many more years with your wonderful family. I'm so glad you have come this far and I pray you go even farther. I will be celebrating living 12 years past diagnosis this coming December. I can hardly believe it myself, but I'm so thankful I have responded this well. We keep on keepin' on!
It's nice to hear from you Colin! I hope that the time without medication stretches on for a while longer too. I am hoping that this new era where we have a monoclonal antibody, Darzalex, funded, will really improve things for us if we need treatments. My doctors are hopeful of that.
Thanks Susan! And congratulations on your success in reaching almost 12 years since diagnosis! I don't think I could have done half as well without my dear spouse helping me!
Congratulations on hitting ten years Nancy!!! And thanks for sharing your story and inspiration.
Thanks Matt for your kind words and I hope that you are well!
Thank you for your great column, Nancy. You certainly have many anniversaries to document, and in doing so you remind us that there will be a time when we can take a breather and enjoy life again. I am thankful for your "in between" times, and I'm hopeful that they continue to bring you lots of peace and happiness between treatments.
Best wishes!
Tabitha
Thanks so much, Tabitha! I keep my birthday and anniversary book handy, and try not to forget anybody! If there are nice events to look forward to, then that can help with any worrying I can be prone to having. Wishing you all the best also!
Congratulations on your anniversary! Regarding the illness, you've done great. Wishing you much health and happiness.
Thanks Marie, and I am wishing you all the best also!
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