A Story of Hope From a Multiple Myeloma Survivor
- Multiple Myeloma survivor Gerry Auth, 77, was first introduced to the disease in 2012 when he was diagnosed with a potential precursor condition. Then, in 2016, he was diagnosed with smoldering myeloma before receiving a full-blown multiple myeloma diagnosis in 2018.
- Auth’s status is now considered minimum residual disease because there are so few myeloma cells left in his body. He serves as an example of hope for multiple myeloma patients because after trying multiple different regimens, he’s finally achieved complete remission.
- Throughout his cancer journey, Auth has had a strong support system in his family and with a support group. He encourages others with cancer to open up about their experiences with the disease.
The 77-year-old resident of Ann Arbor, Mich., was first introduced to multiple myeloma in November 2012 after an oncologist diagnosed him with MGUS, or monoclonal gammopathy of undetermined significance. This condition, in which an abnormal protein known as monoclonal protein, or M protein is in your blood, doesn’t usually cause any problems, but it can be a precursor to some types of blood cancers.
Read MoreIt wasn’t until the fall of 2018 that Auth’s condition progressed to “active” multiple myeloma. That’s when his treatment began.
Gerry’s Treatment Path
His first course of treatment included a series of drugs called RVD revlimid, velcade and dexamethasone. Then, after reaching the five-month mark, his doctor suggested a bone marrow transplant. He underwent the procedure in August 2019 and received his stem cells after a high dosage of the chemotherapy drug melphalan (brand name: Evomela). After that, Auth needed to start a maintenance program of low-dose revlimid.
Unfortunately, this drug caused Auth to have a stroke. He stopped taking revlimid for about a month and added a blood-thinning medication called eliquis to his regimen, which he still takes today, in order to manage his risk of having another stroke. But even after returning to using revlimid, the drug was not working quite as well as Auth’s doctors had hoped for.
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So, after less than a year of maintenance revlimid, Auth switched to a different drug called ninlaro. Sadly, this drug would still not provide the results Auth and his medical team were looking for, but all hope was certainly not lost.
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“Eventually, I’m going to say around October of 2020, she (my doctor) decided we needed to do something more, try a stronger drug,” he explains. “I went on darzalex and pomalyst. And I have been on darzalex and pomalyst since September of 2020. And today, they cannot measure the myeloma cells in my blood using the tests that are normally done at U of M (University of Michigan), which are the immunofixation tests and the SPEP test.”
To be sure of Auth’s current status, his doctor sent blood samples to other medical facilities that had even more sensitive tests than UM. And even when doctors tested a million of Auth’s cells, they only found 17 myeloma cells. So, based on the fact that they found such a small number of cells, Auth’s doctor classifies him as being in SCR, or stringent complete remission.
“The official terminology used in the multiple myeloma community for my situation is MRD, minimum residual disease, and if you have any cells found in that one million, you’re MRD positive, but if they find no cells in that million, you’re MRD negative,” he explains. “Now, MRD negative is where you want to get to; I’m not quite there. I’m at MRD positive, but if we can eliminate those 17 cells then she (my doctor) will change it to MRD negative. And, in either case, she still classifies me as stringent complete response.”
To say that Auth is happy with his treatment response is an understatement, especially since he hasn’t had any major symptoms besides the stroke caused by his medication which shouldn’t happen again thanks to eliquis. Now, he shares his story to show others that there is room for optimism in the world of multiple myeloma.
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“There is hope out there,” Auth says. “There are many, many drug combinations available for us to try based on our condition. I’m an example of someone who has been on two or three different regimens and my current regimen has gotten me down to complete remission.”
Support Throughout His Journey
Auth’s cancer journey is heading in a positive direction right now, but that doesn’t mean he didn’t need lots of support to help get him to where he is today. In fact, he sat down with his family to talk about everything once he was diagnosed with smoldering myeloma. And today, he stresses the importance of opening up to others about your condition if you’re faced with cancer.
“A lot of people, when they get cancer, they’re afraid to tell anybody, they keep it to themselves. I didn’t,” he says. “We talked about it with my grandchildren and my children, even relatives. … You shouldn’t keep it to yourself.”
Auth’s primary caretaker is his wife, Nancy. She’s been on him about what to eat, what to drink and all the rest. And even if it stops him from having another glass of wine, Auth is beyond grateful for the help she’s given throughout his cancer journey.
“She has been a watchdog,” he says of his wife. “She’s been watching over my shoulder this whole time, making sure I’m on the straight and narrow.”
Auth has also found ample support by joining a multiple myeloma support group based in Ann Arbor in 2018. They haven’t been meeting in person during the Covid-19 pandemic, but the group meets virtually once a month. And since becoming an even more involved member of the group, Auth has dedicated himself to continued research on exciting developments within the world of multiple myeloma.
“What I try to do is I’m trying to provide a little bit of an educational aspect to our group because I’m kind of aware of some of the latest drugs that have been approved,” he says. “I watch a lot of the webinars and videos that are put out by the major multiple myeloma organizations, sometimes two or three times a month. And then I pass on that information to our group. So, there’s a lot of back and forth information that goes on in our group meetings.”
Understanding Multiple Myeloma
Multiple myeloma is a blood cancer involving plasma cells a certain kind of mature white blood cell in the bone marrow that helps fight infection by producing proteins that help your immune system fend itself against germs. So, in order to understand multiple myeloma, it's important to talk about the bone marrow.
"The bone marrow is the factory that makes all of the cells that wind up in our bloodstream," Dr. Mikkael Sekeres, the chief of the Division of Hematology at the University of Miami Sylvester Comprehensive Cancer Center, tells SurvivorNet.
The bone marrow makes red blood cells which bring oxygen to our tissues, white blood cells which fight infections and platelets which help stop bleeding. For people with multiple myeloma, cancerous plasma cells, or myelomas, grow uncontrollably in the bone marrow and crowd out healthy white blood cells. This, in turn, inhibits the immune system's ability to fight off infection which can lead to fatigue.
Eventually, the myelomas grow too large in the bone marrow which can cause bone fractures. Myelomas can also lead to kidney damage because these cancerous cells release abnormally high levels of antibodies into the bloodstream which eventually build up in the kidney since its unable to process these extra proteins.
University of California at San Francisco hematologist-oncologist Dr. Nina Shah says cases of multiple myeloma can be grouped into categories that help physicians decide on the appropriate courses of treatment.
"We tend to (divide them) based on how risky the myeloma is, whereas other cancers will be staged based on how far the cancer has spread," Dr. Shah tells SurvivorNet.
Technically, there is no cure for this disease, but recent advances in medicine have made room for hope especially with early diagnoses.
However, Dr. Shah adds, “we want to make sure we make people understand that it's a disease that you can live with not necessarily have to die of."
What Conditions Precede Multiple Myeloma?
Full-on multiple myeloma is generally preceded by two conditions MGUS (monoclonal gammopathy of undetermined significance) and smoldering myeloma.
An MGUS diagnosis means the number of plasma cells in the bone marrow is near healthy amounts, but there is a low amount of abnormal proteins present in the blood. Smoldering myeloma, on the other hand, is when MGUS has progressed but not so much as to be considered full-blown myeloma. Patients with this condition have higher levels of abnormal proteins and plasma cell levels in the bone marrow.
It’s important to note, though, that both of these conditions generally don’t cause any symptoms. They’re most often detected during routine blood and urine tests.
Multiple Myeloma: What Precedes the Full-Blown Cancer?
"They are usually diagnosed by chance because by definition they don't have any symptoms," Dr. Jens Hillengass, chief of myeloma at the Roswell Park Comprehensive Cancer Center, tells SurvivorNet.
And even though these conditions can lead to myeloma, it doesn’t mean they have to. In fact, most patients who have these conditions never actually develop full-on myeloma. MGUS only increases your risk of developing full-blown myeloma by 1%, and having smoldering myeloma increases your yearly risk to 10%. In addition, according to the International Myeloma Foundation, only 20% of people with MGUS actually develop full-on multiple myeloma.
Still, Dr. Hillengass says people who are diagnosed with one of these conditions should be closely monitored.
"If we know that the patient has those precursor stages, then we actually monitor them to find out if the disease really develops," he says.
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