If we went to high school together, you already know part of this story. For those of you that didn’t, I want to bring a little awareness about this particular cancer as it seems it is becoming a little more prevalent. I am not claiming to know everything about this topic. Yes, I am a Physician Assistant, but I do not practice in oncology. I just want to share my Mom’s story to hopefully inspire anyone else who is fighting this type of cancer.
Multiple myeloma is a white cell cancer that forms in the plasma cells. The plasma cells are the cells that help you fight off infection. According to SEER, in 2016 so far, there have been 30,330 new cases of Myeloma diagnosed compared to 246,660 of breast cancer. If you look at the same study, people 35-44 have a 2.9% chance of getting Multiple Myeloma. Not very common in that age group (my mom is now 56).
My mom was first diagnosed with Multiple Myeloma in 1998. She was 38 years old at the time. My mom was found to have a pathologic fracture of her scapula at the time. People don’t just fracture their shoulder for an unknown reason so that was how they first discovered the cancer. She was found to have a tumor on her scapula at the time of diagnosis that caused the fracture. I was only 14 at the time. I remember the day my mom told me she had cancer like it was yesterday. We all thought it was a death sentence. At that time, I really didn’t know that many people who even had cancer let alone beat it.
She underwent radiation and chemotherapy initially and then saw an orthopedic oncologist in Pittsburg, Dr. Goodman. The next step was to have the tumor and part of her scapula removed so that’s exactly what she did. She had the surgery in 1999. Since that time, she has lost partial use of her arm due to the surgery and what had to be removed to take out all of the tumor. Her arm works well for most things but if you stand to close to her and she tries to lift her arm, she may unintentionally smack you.
My mom was in remission only for a little over 2 years when the cancer came back. They found a type of protein in her urine called Bence Jones protein which is specific to Multiple Myeloma. Being that there was very little known about the disease, she was advised to go to Pittsburg and see a specialist. We were referred to Dr. Yeager, a stem cell researcher who recommended my mom have an autologous stem cell transplant.
She donated her own stem cells, went through very high dose chemotherapy and went through the transplant with my dad by her side. She first had some chemo in the town where we live but then was referred for the center in Pittsburgh to have the high dose chemo followed by the transplant. She was away from us for about 2 and a half weeks (I was 16 by this time). When she came home, she had quite the road to recovery. She couldn’t eat much and she was weak. All things to expect after such a big ordeal. After months of the recovery, she started to feel back to normal and she went back to work.
She was in remission from the cancer until May of this year. She started having pain in her back about 3 months ago. She is kind of a stubborn lady so by the time we convinced her to go to the doctor, they did an MRI and found a tumor on her spine that led to another pathologic fracture of her 6th thoracic vertebra.
She wanted to see the same orthopedic oncologist that did her scapula surgery and her insurance would not cover it. She decided to go anyways and paid out of pocket to get his opinion. He saw the MRI and confirmed there was a mass there but had to refer her to a different hospital so her insurance would cover the other necessary testing.
We went to Allegheny General Hospital in May and met with another orthopedist and she eventually underwent a biopsy of the mass. We found out May 16, 2016 that it was indeed a relapse of Multiple Myeloma.
There has been a lot of research done on Multiple Myeloma as the prevalence of the disease is increasing. There are several new therapies for Multiple Myeloma including by mouth treatments. Stem cell transplants are very common for those younger than 70 years old and can be done multiple times if needed.
Multiple Myeloma is a cancer that is now known for having periods of relapse and remission. Those who have had Myeloma are likely to have future recurrences. The Myeloma Research Foundation is currently working on a vaccine to hopefully prevent the relapses of Multiple Myeloma from occurring. The vaccine is currently in clinical trials from what I understand.
We are so lucky that my mom was in remission for 15 years. It seems unheard of when looking at statistics and hearing other peoples stories, but I am so thankful that we have had 15 years free of the disease. My mom is incredibly resilient and takes after her mother. They are quite possibly 2 of the strongest women (and stubborn) that I will have the chance to know in my lifetime. I know she can beat this.
We recently met with her local oncologist to go over the treatment plan. She will undergo radiation of her spine to shrink the existing tumor and he would like us to see a Multiple Myeloma specialist to discuss the best option from here. We are doing some research and have settled on going either to the Mayo Clinic or MD Anderson for an opinion from the specialist.
My mom was started on decadron for the tumor recently and she feels a lot of relief from that. She is still working full time (did I mention she was stubborn?). If you would look at her, you would never know she has cancer. In fact, if you look at her blood work, you would not even know she has cancer… except for one spike in a protein chain that is consistent with Multiple Myeloma. She is not anemic and her kidney function is completely normal (thank you God!).
Like I mentioned before, she is very resilient and she is looking forward to getting the radiation over with. She will undergo about 2 weeks of treatment and then see her oncologist again. They plan to do another MRI 6 weeks after the radiation treatments. During this time frame, we hope to nail down an appointment with a specialist and see what other options are recommended for treatment.
We are saying prayers everyday for her as we know God is listening. We know a very personal God who will listen and be a shoulder for us to cry on when things get hard. We also know a God who will rejoice with us when we get good news. God is good.
I wanted to share this part of my story to possibly bring a little awareness to this type of cancer. My mom’s story is unique as I know there are many other’s suffering from this type of cancer who are not as fortunate. It is sad to me that so many suffer from cancer. It seems to be so prevalent and I am hoping more research will be done to find the root cause of the disease and there will be ways to prevent it in the future.
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