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Spotlight on Munira Premji: |
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Choosing hope in my journey with cancer. |
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Myeloma Canada asked Munira Premji, a cancer warrior, to share her experiences with cancer. In this story, Munira reminisces about what it was like to learn she had cancer, her treatment regimen, support and resources that helped her, and what she has learnt through the process. |
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How did you find out you had multiple myeloma? |
For several months, I noticed that I was feeling very tired. My appetite had reduced, and I was losing weight. I was having night sweats and bone pain. I thought this was due to stress at work or menopause. My family doctor ordered blood tests, which indicated that my hemoglobin was dropping rapidly. She had me go to the emergency ward at North York General Hospital, where I received a blood transfusion.
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The doctors suggested I have a colonoscopy to find out the cause of the blood loss. The colonoscopy results came back normal and yet my symptoms continued. When my hemoglobin dropped further week after week, I checked myself into emergency at Toronto General Hospital. Dr Jean Wang, the hematologist on-call, attended to me. It was February 2, 2012. She ordered extensive blood tests. My husband, Nagib, became worried and asked Dr Wang what she was looking for. She said it was too early to tell, but the worst-case scenario was cancer. She recommended that I stay at the hospital overnight for a bone marrow aspiration.
The very next day, Dr Robert Wu, the attending physician, held both my hands and solemnly uttered those fateful words: “You have myeloma. An incurable cancer of the blood.” He said further tests would be required to determine how far the cancer had spread and the prognosis for recovery. “For tonight”, he said, “we will give you another blood transfusion and you can go home.”.
While we were grappling with this this news, worse news was waiting in the wings. The week following my diagnosis of myeloma, I was back at work. The phone rang and it was Dr Wang. She said, “We’ve had a chance to look at the results from your bone marrow biopsy and we’d like you to come in for more tests.” I could hear the gravity in her voice. Further bone marrow tests revealed a second cancer, lymphoma.
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What was it like to be diagnosed with two advanced cancers within weeks of each other? |
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On March 8, 2012, two weeks after our first meeting with oncologist, Dr Tiedemann at the Princess Margaret Cancer Centre, he confirmed the diagnosis of Diffuse large B-cell lymphoma, a very aggressive type of non-Hodgkin lymphoma, which had advanced to Stage 4, coupled with IgG kappa multiple myeloma, which had advanced to Stage 3 and was treatable, but not curable. Dr Tiedemann recommended that we treat the non-Hodgkin lymphoma immediately and put the multiple myeloma on hold. He was very clear. If we did not get the lymphoma under control, I would not make it. The gravity in his tone was unmistakable.
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The treatment for lymphoma was to begin on March 9. But before I could even start treatment, I almost died.
I went to see Dr Tiedemann on March 8 to get clearance to begin chemotherapy on March 9. After a routine blood test, he saw that my hemoglobin had plummeted to 42 (the normal value for women is 120 – 160), from 90 the week before. Dr Tiedemann immediately arranged for an ambulance to take me to the Toronto General Emergency department (as Princess Margaret does not have an emergency unit). From the emergency unit, I was taken to Intensive Care. My hemoglobin level had now dropped to a dangerously low 36, and the doctors warned us that my organs would start shutting down one by one. I needed a very specific blood type, since my body had created antibodies that would kill me if I was transfused with the wrong one. It would take at least six hours for the hospital to make sure I received the right type of blood. I did not have six hours. So, the decision was made to transfuse me with four units of blood that had been partially cross-checked against mine.
The first few minutes of the transfusion would be critical; my body would either accept the blood and I would live or it would reject it, and I would die. The absurdity of the situation did not escape me. Here I was, in the jaws of death and I had not even started treatment.
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What was your treatment regimen? |
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I started the treatment for lymphoma on March 12, 2012. The lymphoma treatment consisted of six full-day chemotherapy sessions called R-CHOP that took place every three weeks for four months. R-CHOP is an acronym that stands for five medications: Rituximab, Cyclophosphamide, doxorubicin Hydrochloride, vincristine (Oncovin, Vincasar PFS) and Prednisone. These medications were delivered orally and intravenously over a full day stay in the chemo ward. During my R-CHOP treatments, I ended up in the emergency ward of the hospital seven times, with overnight stays of a total of twenty-eight days. My sixth and final R-CHOP chemotherapy treatment ended on June 26, 2012. I rang the Bravery Bell at Princess Margaret with such gusto to mark the culmination of four months of chemo on June 26, 2012.
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Dr Tiedemann graciously gave me two weeks to rest before starting the treatment for myeloma. Nagib whisked me and our daughter Sabrina to Florida to celebrate, to reflect and to recharge. And we did. We woke up with the sun. We swam, we walked, we danced, and we watched beautiful sunsets. |
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Munira's best “mother-in-law’ impression! |
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And then it was time to focus on the myeloma. My treatment for myeloma was a multi-step process, culminating in an autologous stem cell transplant, where my own stem cells would be extracted, scrubbed of myeloma cells and re-introduced into my body.
In order to prepare my body for my newly scrubbed stem cells, I underwent 12 weeks of what's known as "induction" chemotherapy, using the same drug combo in use today - Cyclophosphamide, Bortezomib and Dexamethasone, or CyBor-D, an acronym very familiar to most myeloma patients. The Bortezomib (Velcade) was given by IV weekly, and the other drugs were administered in the form of 22 pills. This CyBor-D chemo was much less invasive than R-CHOP.
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After the induction chemotherapy, I started the process of stem cell mobilization. That’s when I hit another huge hurdle. The collection of stem cells generally takes two or three days. In my case, there were not enough stem cells for harvesting. Each day, I went to the hospital hoping that they could start the collection. The hospital would do bloodwork and after an agonizing wait, would send me home declaring there were not enough stem cells. Before sending me home they would inject me with Neupogen to try and wake the stem cells up. After eight tries, on my oncologist’s recommendation, my husband, with shaking hands, injected me in my stomach with Mozobil. Mozobil was a gift that the drug company Sanofi gave me on compassionate grounds because I did not meet the criteria to have the drug covered. Mozobil did the trick and on December 11th , after my ninth try, the hospital was able to collect enough stem cells for two transplants. Without this drug, I am convinced that I would not be alive today.
The next step was to wait for a bed to be available to receive the stem-cell transplant. On February 13, 2013, I got the call that a bed was available, and I was giddy with anticipation. On February 14, 2013, the transplant happened, and Munira Version 2.0 was born!
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My transplant worked miraculously for 7 long years. Unfortunately, during this time, I was diagnosed with a third cancer, Stage 3 breast cancer and required surgery, chemotherapy, and radiation.
In 2020, my numbers for myeloma showed a recurrence of the disease and I underwent my second transplant in November. A very feisty Munira Version 3.0 emerged. It has been about 13 months since the transplant, and I am feeling fantastic. I am not on any maintenance drugs and only take acyclovir for the prevention of shingles, and a pill for the breast cancer.
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Daily radiation therapy at Sunnybrook Hospital
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What support and resources helped you through your cancer journey? |
Having a great oncologist is a start. I am fortunate to have an oncologist who is uniquely qualified to deal with both, lymphoma and myeloma; someone who balances head with heart and who I can talk with openly and honestly about my condition and treatment. I have benefitted greatly from the Toronto Multiple Myeloma Support Group where I now sit on the executive team. It is a place where my husband and I can meet other patients and caregivers who are going through a similar journey. It is a place to get great information from seasoned practitioners about myeloma, including new treatments research, and trends. I have been impressed with Myeloma Canada. As a national organization, Myeloma Canada does excellent work in the areas of research and advocacy that benefits us all. I have experienced first-hand the help that Myeloma Canada gives to Support Group Leaders in terms of research, resources and conferences so we can better support our members.
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What have you learned about yourself going through your cancer journey? |
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I have learnt that time is fragile and that we all live on borrowed time. I have learnt about the value of living life one moment at a time rather than rushing through it. I have learnt that you do not do cancer alone - - that caregivers are the true heroes of a cancer patient’s journey. I am grateful to be living in Canada, with its publicly funded system. I have learnt that it is important to be an advocate and support cancer research as 1 out of nearly 2 Canadians will get cancer in their lifetime. I have also learned that cancer is a word and not a life sentence; that we are so much more than our cancer.
And I have learnt to hold on to hope when confronting cancer.
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You have written a book called Choosing Hope: 1 Woman. 3 Cancers.
Tell us about it.
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Writing my book, “Choosing Hope: 1 Woman. 3 Cancers” was a labour of love and it was a dream come true when Mawenzi House Publishers published it in 2020. What sets this book apart from other cancer books is that it is written from my perspective as a patient and the perspective of my family as caregivers.
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My family went through their own roller coaster experience as they saw me struggle. And it wasn’t until we started to write the book together and talk about our experiences, that I even knew half of what they were going through. It was a humbling experience.I had planned to have many book launches across the country, however COVID had other plans. So, we have been having virtual book launch events through Facebook Live, Zoom and virtual festival events, which have been a lot of fun! |
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What advice would you share with newly diagnosed myeloma patients? |
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I recognize that newly diagnosed patients are often scared and anxious when they learn that they, or a loved one, has cancer. I do a lot of listening to understand where the new patient is and meet them where they’re at. Sometimes they are looking for specific information about the stem cell process or nutrition; sometimes they just want to speak to someone who has been there.
I tell them that the treatment options available today, compared to when I was first diagnosed, have increased exponentially, and that, while myeloma is not currently curable, it is certainly treatable. I encourage them to attend a Myeloma Support Group for support, and most appreciate the support they receive. I point them to resources offered by Myeloma Canada that they might find helpful.
Depending on where they are on the journey, I talk to them about the importance of advocacy and participating in cancer walks to raise awareness of myeloma and other cancers and to raise funds for research so we can eliminate cancer in our lifetime.
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Thank you for sharing your story with us today Munira. We wish you continued health and happiness. |
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