- The Myeloma Beacon - https://myelomabeacon.org -

Northern Lights: Reaching The Five-Year Milestone

By: Nancy Shamanna; Published: July 11, 2014 @ 9:21 am | Comments Disabled

The month of July has always been a special month for me. There are many family birthdays, and my husband Dilip’s and my wedding anni­versary also falls into this month (it’s our 37th this year).

However, five years ago, in July 2009, I had a very bad month. That was when my myeloma was diagnosed, and it has changed the course of my life forever. Every year since then, I have felt apprehensive as my myeloma anniversary ap­proached.

This year, however, I feel I have cause to celebrate for the first time, since I have now reached the five-year survival milestone.

This five-year milestone also gave me pause to think about what I have been through over the last five years, and how my life has changed since my diagnosis.

The months leading up to and immediately after my diagnosis were tough. During the spring of 2009, I felt ‘off’ psychologically, was tired, and had low back pain growing in severity. This culminated in four com­pres­sion wedge fractures. It was my younger daughter, studying at medical school at the time, who in July sug­gested running protein blood tests. The abnormal test results led to an appointment with a hemato­logical oncologist, who predicted and diagnosed multiple myeloma.

Four cycles of Velcade [1] (bortezomib) plus dexamethasone [2] (Decadron) later, I felt much better. My bones were healing with the help of Aredia [3] (pamidronate), and I felt lighter and more clear headed.

I then went through stem cell harvesting in December 2009 and had my transplant in January 2010. Since I did not achieve a stringent complete response after the transplant, I took a low dose of Revlimid [4] (lena­lido­mide) for a year, which put me into the stringent complete remission that I was so happy to obtain. To say I felt relieved at this point in time is a complete understatement!

Since then I have not received any additional treatment, but, every three months, I have comprehensive blood testing done and see my doctor. Because I am acutely aware of how serious a disease myeloma is, I still worry about the myeloma becoming active again.

And since January 2013, my doctor has observed some myeloma activity. I had an instance of a higher kappa/lambda ratio in the serum free light chain test, but then the ratio went back to normal. My M-spike has also been slightly elevated since last August.

However, the values are not high enough for me to re-start treatment. I am still considered to have stable disease. My doctor has told me, though, that if my M-proteins were to climb too high or start to increase rapidly, I would be put back on medication -- most likely Revlimid plus dex.

Throughout my five-year journey with myeloma, I have learned quite a lot about this disease and met many myeloma patients, caregivers, and medical staff.

I didn’t ask to have cancer, but since my diagnosis, I have received nothing but encouragement and kind­ness from other people. That has been the silver lining to this cloud.

Perhaps because of my traumatic injuries and a lengthy time of treatment, I became quite immersed in studying myeloma.

As a result, I got involved with support groups at the local and national level. I am most interested in sup­port­ing myeloma research and helping with patient advocacy. I think that, after dealing with the disease for five years, I can see what we patients could benefit from most.

I feel very lucky to only have a slow growing form of the disease. I can live with my damaged bones, my stable disease, and my worries, too. I still exercise a lot, and try to eat well and get lots of rest in order to keep my immune system strong. I truly appreciate my new normal and the fact that I have not been on therapy since April 2011. However, I am aware that this situation could change anytime, and it’s good to know that there are treatments available to me if I need them.

Looking back over the last five years, my overwhelming feeling is one of gratitude and happiness. I realize that I might not have had these five years at all because my myeloma was sufficiently advanced that I could have perished from it shortly after my diagnosis. Thankfully, novel agents and the stem cell transplant were available to me, and those treatments have kept my disease in check so far.

My husband and I are ‘empty nested’ now, and we are enjoying seeing our two daughters moving on with their own careers and personal lives.

At age 63, I have a lot of wonderful memories to look back on, but I think I can also reasonably hope for a few more good years. Fortunately, I have been able to continue doing the things that I really enjoy, such as sing­ing in my choir, volunteering for myeloma groups, pursuing my stitching hobbies, doing bookkeeping work, writing, reading, exercising, gardening, and travelling. In fact, these activities keep me just as busy as ever.

My father, who is 88 years old and a World War II veteran, tells me that many soldiers did not even survive to age 20 during his youth. The survivors of that war, or any other war for that matter, are aware of how fortunate they were. We still honor the lost ones at Remembrance Day ceremonies here in Canada.

Sometimes I feel the cancer world is like that too. We who have survived are very thankful, but we also re­mem­ber those who were lost to the disease. We try to work to make the situation better for the future, just as the war veterans have.

My friends who are not afflicted with myeloma tell me that no one should have to worry so much about their cancer recurring. As one friend said, ‘If you can make it to five years, you can make it to ten years!’

That is certainly my hope.

───────────────── ♦ ─────────────────

The quotation for this month is from Jean Massieu (1772 – 1846), a French deaf educator, who said: “Gratitude is the memory of the heart.”

Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here [5].

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at  .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2014/07/11/northern-lights-reaching-the-five-year-milestone/

URLs in this post:

[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[3] Aredia: https://myelomabeacon.org/tag/aredia/

[4] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[5] here: https://myelomabeacon.org/author/nancy-shamanna/

Copyright © The Beacon Foundation for Health. All rights reserved.