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Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis

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Published: Nov 2, 2018 1:29 pm

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 .

Photo of Nancy Shamanna, monthly columnist at The Myeloma Beacon.
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6 Comments »

  • David Finkelstein said:

    Glad you are doing well. Hope it continues!

  • Nancy Shamanna (author) said:

    Thanks, David, and hope you are doing well also!

  • Susan McDowell said:

    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.

  • Nancy Shamanna (author) said:

    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.

  • Patty Nolan Bodin said:

    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.

  • Nancy Shamanna (author) said:

    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!