Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
I recently attended a talk about the history of treatments and supportive therapies for multiple myeloma in Canada. Being now in the tenth year since my myeloma diagnosis in 2009, I find this to be an interesting subject. It makes me realize how much things have changed here in Canada, and elsewhere, with regard to the treatment of multiple myeloma.
My induction therapy, or initial treatment after diagnosis, consisted of Velcade (bortezomib) and dexamethasone (Decadron).
Velcade was approved and started to be funded by provincial health plans in Canada in 2005. It was funded in Alberta, the province I live in, in 2006, a scant three years before my diagnosis. Before that, thalidomide (Thalomid) was the main drug being used as a myeloma treatment here in Canada.
After the approval of Velcade, thalidomide was de-listed as a myeloma therapy and now is available only by special access from the manufacturer, or by the patient paying out of pocket. Revlimid (lenalidomide), the follow-on drug to thalidomide, was only available by clinical trial when I was diagnosed. A friend of mine was taking it, but at that time I was on a very steep learning curve and did not understand much about clinical trials or treatment alternatives.
When I took Velcade, I always got it by infusion. It was administered at a medical daycare unit, and the procedure took a couple of hours. Nowadays, Velcade usually is given by subcutaneous injection, which is much faster and less likely to cause neuropathy. Since I only had four cycles of Velcade plus dexamethasone before my stem cell transplant, I did not develop serious neuropathy.
The dexamethasone I took along with the Velcade is a common part of many myeloma treatment regimens. It is a corticosteroid and helps the primary myeloma therapy, or therapies, be more effective. The side effects of dexamethasone, however, can be difficult to cope with, both for the patient and the people around them. In the early days of its use, dexamethasone was given in a high dose of about 80 mg per week or more. Then as a result of patients’ negative reactions, a lower dose (20 to 40 mg per week) was tried and found to be better. The "low-dose" dexamethasone was the amount I have had, but even so, I needed to have supportive care to deal with the drug’s side effects; for example, I took a drug to help me sleep.
The Velcade plus dexamethasone worked well and brought my myeloma down to a very good partial response, and I moved on to an autologous stem cell transplant in January 2010.
Autologous stem cell transplants are not curative, but they can extend survival in multiple myeloma patients. When I had my transplant, I was reassured to learn that the survival rate for the transplant itself was over 95 percent. Although I was very frightened to have such a procedure, it worked out well for me in the long run.
Revlimid was approved for relapse here in Canada in 2010, so I was able to access it after my stem cell transplant for a year since I was still not in a complete response. After that, I was off of myeloma drugs until 2014, when I relapsed. At that point, I took the highest dose of Revlimid (25 mg) for 21 days out of 28, plus 20 mg of dexamethasone weekly. Those treatments went on for two years.
Overall, I took Revlimid for three years following my transplant. A few years ago, Revlimid also was approved and funded for maintenance therapy and as a first-line treatment for non-transplant eligible patients here in Canada. So there now are more options for the use of Revlimid.
As a supportive treatment soon after my diagnosis, I received the bisphosphonate pamidronate (Aredia) over about three years. At first it was given monthly, then every two months, and finally every three months. In addition, the infusion time was reduced from four hours down to two hours over time (it was given cautiously at the beginning in order to ensure no damage was done to my kidneys). Because I was in a remission when I reached the three-year anniversary of my diagnosis, the pamidronate infusions were discontinued.
Another widely used bisphosphonate, Zometa (zoledronic acid), only came into use here in Canada after I had started treatment with pamidronate. I just stayed with the first drug, and I have not had any more fractures or lesions, so the pamidronate seems to have worked in my case.
Since my diagnosis, some new therapies have been approved and funded in Canada for the treatment of multiple myeloma, including Pomalyst (pomalidomide) and Kyprolis (carfilzomib). Darzalex (daratumumab) also has been approved by Health Canada, the Canadian counterpart to the U.S. Food and Drug Administration, but it is not yet funded by provincial health plans. I hope it won't be too long until Darzalex's funding is finalized so that we also will have a monoclonal antibody available for the treatment of multiple myeloma outside of clinical trials and private funding. I am not eligible for many clinical trials because I had a second cancer in 2016, so I am always glad when more treatments become available outside of clinical trials.
So far, I have not needed any of the recently approved drugs, but I may need them in the future. I am currently on a middle ground of feeling healthy while also being monitored closely for another relapse. Compared to those my age who have neither acute nor chronic health problems, I am at a disadvantage. However, compared to those I have met in person and online who have had worse problems with myeloma and other cancers, I am doing well. I count my blessings every day and also hope for a cure for myeloma.
All in all, I am extremely happy and thankful for my good health now. I realize that I am possibly living on borrowed time, and I therefore strive to make every day a good one. If I had not received all of the treatments for the two cancers I've had in the last decade, I would not have lived to enjoy the wonderful time I can now spend with my husband and our family.
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The quotation for this month is from Michael J. Fox (1961 - ), a Canadian-American actor, author, film producer, activist, and comedian, who said: "Medical science has proven time and again that when the resources are provided, great progress in the treatment, cure, and prevention of disease can occur."
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: Celebrating A Decade Since Diagnosis
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
Glad you are doing well. Hope it continues!
Thanks, David, and hope you are doing well also!
Thank you for the review of your treatment with its underlying message of hope. Myeloma treatments are expanding and improving all of the time and old survival statistics should be thrown out of the window. I didn’t realize that a second cancer could make me ineligible for many clinical trials. Good to know.
Thanks, Susan. If you wanted to try clinical trials, then you would check with your doctor as to the details about problems with exclusions. I think it varies from trial to trial, and I also think that there is a time limit such as 3 to 5 years after a second cancer before one could get on one. I have more hope than ever about living with myeloma since there are improvements being made for our care.
Thank you, Nancy, for your perspective on the evolution of care for multiple myeloma. We are still coming to grips with the pace of treatment with the newly approved drugs for multiple myeloma. It really gives many in our community hope that when they relapse there might be something new out there for them. Back in April during my husband’s biannual checkup at his myeloma treatment center, we had the opportunity to discuss several new lines of treatment with one of the specialists there. Even since 2014, when my husband was diagnosed, the options for treatment have multiplied considerably. All of this gives us hope.
Thank you for sharing your treatment history. We are eternally grateful to you and the other Beacon contributors for enlightening us and being so selfless.
Thanks so much Patty for your observations and kindness too! Having the opportunity to write for the Beacon and reach a wide audience has really been special in my life as a patient. When I was first diagnosed, the outlook for patients was quite dire, and it was only when I realized that patients such as myself from a decade ago were getting new treatments that had never been available before, and that worked well too, that I was able to lift out of what I think would be called depression. More drugs will continue to be available, and then of course the survival statistics will improve also!
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