Where we have been and where we are going in fighting myeloma
Seven years have brought many more treatment choices for myeloma patients
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Note: This column describes the author’s experience with several multiple myeloma treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
I’m about to hit a new milestone in my multiple myeloma journey. The seventh anniversary of my diagnosis and the start of my trip through what I call “the land of I don’t know” arrives on April 26.
That puts me in the 45% group. What does that mean? The National Cancer Institute’s Surveillance, Epidemiology, and End Results database shows the seven-year relative survival rate for myeloma patients is 45% (based on U.S. data collected from 2000-2021).
A lot has happened in the past seven years that makes me so hopeful for all of us on this journey.
Just look at the difference seven years can make:
The picture in 2019
Triplets were the big thing in treatment when I was diagnosed. For most patients, that meant a combination of Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone.
Since I had some kidney damage, I got Cytoxan (cyclophosphamide) instead of Revlimid, combined with bortezomib and dexamethasone. This triplet went by a name that could have been coined by a science fiction writer: CyBorD. That was followed by a stem cell transplant and Revlimid for maintenance.
When I started treatment, my most likely relapse choices were Kyprolis (carfilzomib), Ninlaro (ixazomib), and Xpovio (selinexor), that latter of which was approved just weeks after I started induction.
That was then.
A panorama of treatment choices
There’s been an explosion of approvals for myeloma treatments in the past seven years. The U.S Food and Drug Administration approved Sarclisa (isatuximab-irfc) shortly after I was declared in stringent complete response, the highest level of remission. These days, Sarclisa is one of two choices for quadruplet induction therapy; the other is Darzalex (daratumumab).
Treatments are also being approved for earlier use. A few years ago, chimeric antigen receptor (CAR) T-cell therapies like Abecma (idecabtagene vicleucel) and Carvykti (ciltacabtagene autoleucel) were only available for patients who’d been through multiple lines of treatment. Now they’re approved as soon as a first relapse. There are also bispecific antibodies like Tecvayli (teclistamab-cqyv) and the most recently approved Lynozyfic (linvoseltamab-gcpt).
The road ahead
More treatments are in development. The Multiple Myeloma Research Foundation lists dozens of them on its emerging therapies page, with names like mezigdomide, anito-cel and ententamig in Phase 3 of clinical trials. Others in earlier stages don’t have tongue-twisting names yet, just combinations of numbers and letters.
I used to keep a tally of approved treatments, but I lost count a while ago. At this point, seven years down the line, I’m looking forward to the day when we can bring the number to one — the one that is a cure!
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
Crystal
I've been really enjoying your articles, but you are the first person I've known with MM who also found it because of blood pressure and kidney damage. I had NEVER had high blood pressure, but it was out of control. I also had severe anemia which was causing fatigue and shortness of breath. In one year I went from normal BP and CMP/CBC results at my annual to kidney numbers of someone with Stage IV kidney disease and sky high blood pressure (and HGB of 6.8).
However, it took another 6 months to figure out my diagnosis because my nephrologist thought the anemia might have caused the kidney damage (I had always had bad menstrual cycles, but they had suddenly progressed to 14 straight days of bleeding).
After a few blood transfusions, a hysterectomy, and 3 months of waiting for my kidneys to improve, I was then sent for a kidney biopsy which is what found my sky-high kappa light chain protein counts and led to my diagnosis.
RVD put me in remission, and then I had a stem cell transplant that nearly killed me. But I've been in continued remission without maintenance (post transplant, I react poorly to Revlimid) since February 2023. And I celebrate every milestone!
Donita Tillman
Has there been any updates on myelo fibrosis?
Dawn
Thank you for information I am on my 4th year
Rebecca King
I too am reaching my 7 year anniversary of diagnosis of MM this month. Most of the drugs are familiar to me and so is the CAR-t cell therapy which I submitted to last fall. I had made up my mind that I had, at best, two years to live after my diagnosis. But here I am! My mother passed from this beast of a cancer 25 years ago after only 10 months of treatment. I am endlessly grateful to Drs and scientists who had advanced the treatment so very far from then. And I love the attitude of the person writing this article. I too hope for 1 treatment...a cure!
Bill K
It’s encouraging to read what you have to say. Some of us can lose hope and find ourselves trapped in a despondent state when we get the awful diagnosis. If the treatments don’t go well right off the bat, we can be mired in pessimism for a long time.
I was diagnosed a little over eight years ago. My particular variety of MM easily shook off standard treatments. Failures such as going only six weeks on RVd before relapsing and an exhausting stem cell transplant procedure which did nothing for me eventually led me to a dark place. I ran through all the usual treatments and a few trials until my trial of Talvey, relapsing in 18 months yet having learned to accept my fate. My last treatment was two years ago to the day: Carvykti. After a year of steady improvement, I was finally granted the term my onc doc had avoided saying for the past seven years: remission.
We are now in the golden age of cancer treatment, not just multiple myeloma.
Even though we live in a country which has officially turned against medical science, globally research into very promising areas is continuing. I hope people will read your articles and grab onto the hope that weaves throughout them.