Myeloma Mom: My Aunt Margie
My multiple myeloma diagnosis in 2005 was a shock and a mystery. I was 30 years old and healthy; I’d never even heard of this disease. It seemed to appear out of the blue, against all odds. Where did this thing come from, and how did I get it? No doctor could tell me.
Six years later, a small piece of the puzzle fell into place, but not in a good way. My Aunt Margie – my dad’s only sibling – was also diagnosed with multiple myeloma. Was it a bizarre coincidence? My doctor at the Mayo Clinic said no; there was obviously a genetic component to the disease that Margie and I shared.
That was the end of the similarity, however.
While my myeloma has always been fairly tame and willing to respond to treatment, Margie’s was a beast. It was wildly aggressive and – in the end – unstoppable.
While I’ve never had any symptoms, Margie ended up with infections, broken ribs, and kidney issues. I haven’t needed anything other than Revlimid (lenalidomide) so far; Margie needed Velcade (bortezomib) and a stem cell transplant right away.
She had a brief remission, but it wasn’t enough. The myeloma came roaring back, and it even caused her to develop tumors behind her eyes. After even more chemo, radiation, and surgeries, there was nothing left to do.
My Aunt Margie passed away in July, just over a year and a half after her diagnosis.
I will miss her terribly. And now my family is left with even more questions.
While one small question was answered, so many more popped up. How can one disease, shared by two members of the same family, behave in such completely different ways? Why hasn’t my myeloma been aggressive? Why wasn’t Margie’s easy to tame?
It suddenly struck me: This is why myeloma is so hard to treat and – so far – has proven impossible to cure. It seems to me that you never know how it is going to behave.
Of course, I’m not an expert. A few weeks after Margie died, however, I read a Myeloma Beacon column written by Dr. S. Vincent Rajkumar of the Mayo Clinic, and one part really jumped out at me. Dr. Rajkumar wrote, “The type of myeloma one patient has may be completely different than the myeloma another patient has; it may not even be the same disease.”
Not even the same disease. No wonder nobody can stop this thing.
I know that doctors, scientists, and other experts are working hard toward an end to this disease, and now I have a new respect for what they have to deal with.
And because the disease is so tricky, so hard to understand, my family is now without Margie.
She was a wife, a mom, a grandma, and a former teacher. She was an expert on antiques. She and I shared a lifelong obsession with The Wizard of Oz.
She was always outspoken and had a wonderfully twisted sense of humor. More than once, she planted plastic pink flamingos in my yard while I was away. Every now and then, a package would show up on my doorstep with Margie’s return address on it, and I’d never know what to expect when I opened it. It could be a framed photo of Judy Garland, a copy of “The Twits” by Roald Dahl, or a cat costume in my size.
With Margie, you just never knew.
And with myeloma, you just never know, either.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
So sorry for your loss Karen. My heart goes out to you.
Karen, I'm so sorry for your loss. No one else in my family has been diagnosed with mm but I've wondered about a genetic component as well. I have also noticed how different the disease can be for different patients and one of the factors that stands out to me is that very often those who are younger when diagnosed respond much better to treatment than those who are older. I was diagnosed at only 23 and feel extremely lucky and grateful to still be alive and living a pretty normal and happy life after 19 years while others with the same disease aren't as lucky. I'm sure there are many factors at play and I pray researchers will find them someday soon. I wish you all the best.
Hi, Karen. I am so sorry to learn of the passing of your beloved Aunt Margie. Since you and I have been cyber pals for awhile, I smile at the thought that you and your aunt shared an affinity for flamingos and Frank L. Baum. There's not a darned thing fair about myeloma, but for it to significantly impact a family twice is beyond being unfair. I'm with you, one disease or many, we have to kick MM to the curb. I pray that you and your family continue to do well.
I'm so sorry to read about your Aunt Karen. My thoughts are with you and your family.
My Uncle, Dad's brother, had myeloma also, and my Mum has MGUS, which can develop into MM...it really makes you wonder about genetics. Roll on the day when a cure is found and we can put this disease where it belongs once and for all. Hope you continue to do well in your fight!
Beautifully written; it will be deeply felt by all who read it.
I am sorry to hear about your dear aunt. She sounds like she was a lovely person, and lived quite a full life. 'The Wizard of Oz' is such a wonderful tale too...nice that you could share such special thoughts with her. I agree that there are different types of myeloma, and it is sad that she had such an aggressive type of disease. My thoughts are with you for your loss.
Your sweet aunt must have suffered terribly with tumors behind her eyes. I've heard that MM can attack the bones in the head...and I'm not sure I could handle that. Like you, my myeloma is a bit of a mystery. I was diagnosed at age 50, much older than you, but still young, in very good health, and I'd never heard of the disease before it came up in the many ex-rays and CAT Scans on the road to my diagnosis. I'm sorry you have the disease and happy it is mild and responsive to drugs. No wonder it took me awhile to "get" what this disease is all about. I had multiple bone tumors, but no other symptoms except for pain. All tests were normal but the free light chain blood serum test. One doctor said it was probably mild, another said it was risky. I am now in complete remission after the dex/vel/rev. How can doctors diagnose, treat, or cure a disease that manifests in completely different ways? It's a tricky and mysterious disease, for sure. I read somewhere that it might be a combination of multiple cancers. I hope that we find an answer in our lifetime. God bless.
Karen,
I am sorry for your loss. My husband Tom also had an unstoppable version of MM. Despite a clean scan for abnormal DNA, starting immediate chemo of Velcade, Dex, and Rev, and an early positive response it bloomed to extra-medullary in just 4 months from diagnose.
Next came an agressive treatment at UT Southwestern with the 96-hour VDPACE chemo regiment, followed by a Stem Cell transplant the next month. The extra_medullary tumors where back in 53 days. The tumors laughed at the 2nd round of VDPACE that followed, and the newly released Kyrpolis made no difference.
Tom was 54 when he was diagnosed on 10/5/11. He died a year and 2 days later on 10/7/12.
I am happy there are MM patients that live for years with this disease, but I agree with you about those that don't. It is bittersweet for those of us who loose a love one that did everything right in the treatment protocols and they had no effect.
Karen, it sounds like Margie was a wonder aunt, and human being, and I am so sorry for the your families loss. It must not be the genetic link that determines high or low risk disease. Michelle, so sorry to hear about your Tom. Like you stated Tom's story is one that doesn't seem to fit into myeloma playbook. Low risk, VRd, and VDPACE with SCT SHOULD have been a winning combination for success and it wasn't. Myeloma is a MONSTER!
Interesting to read of your experience. Shortly after my diagnosis, my mom coincidentally received a copy of my paternal grandfather's death certificate. Although he died of a heart attack, it mentioned that he had been been diagnosed with myeloma a year or two prior to that. That was new to us - he'd never discussed it. My dad did remember taking him to the doctor once every month for radiation treatments on his hip, but they hadn't talked about the condition he was being treated for.
It was quite a surprise to find this out, and I'll make sure my kids know to watch their blood work carefully.
Very disturbing. My husband was diagnosed a month ago. We're at the beginning of all of this. Who knows what form his myeloma will take. Your column has left both of us with nightmares.
Deborah, I'm very sorry if the column frightened you or gave you nightmares. I know that a myeloma diagnosis is a nightmare in itself. Obviously, Margie had an extreme case. You will find many more people who are surviving much longer and doing much better. I am one example, and I like to tell my story to show people that you can live a long time and do very well after a myeloma diagnosis. However, I felt Margie's story needed to be told as well, because it shows why it is so urgent that we find a cure. Best of luck to you and your husband.
This disease is frightening, but your column expresses so vividly the closeness and deep appreciation that you and your aunt had for each other. It was a lovely relationship that will continue forever. You are blessed.
Deborah,my husband was diagnosed feb of this year. Don't look at it as a nightmare but a journey. You take each day as it comes and enjoy it the best you can. It will be YOU that will do most of the planning, research. If your first doctor is not educated in MM then find someone else. Get copies of all test results so you can ask questions. DO NOT depend on medical staff to take care of you. You make sure everything is preapproved, covered by insurance. There is also help out there to help with expenses. Cancer is a very expensive disease.
Our doctor said in the past 2 years there have been break through in MM giving more hope.
GOD BLESS YOU
I just happened upon your article while looking for information on a mm conference. I too have mm and was diagnosed 3 years ago. My dad also had mm and will be gone 13 years this November. When he was diagnosed he was given 5 years and lived exactly that. Things have changed a great deal since his diagnosis. I've had two stem cell transplants and have been in remission for just over two years. I continue to take revlimid and am doing well. I also had many questions when first diagnosed because I was told that this cancer is not genetic, but I find it too strange that both my dad and I would have the same type of cancer. I know my children and siblings worry about the chance of them having it too. All I know is that family and faith are so important in fighting this monster. I pray daily that they come up with a cure. I am blessed to have a strong support group and that includes the best oncologist , Dr. Robert Taylor. I believe that both God and my dad brought him into my life. He has been amazing through all of my treatments. God bless you and I pray that you will have a very long life.
Karen I'm interested to hear more of your story, are you only on Revlimid now - has that been the case since your diagnosis? My husband 41yrs old was diagnosed February, 2013 but really had no symptons other than foam in his urine. He began getting treatment on April,2013 with infusion therapy and CRD because creatine was a bit elevated. We are now at a point where they are talking stem cell transplant, but we are unsure as he is feeling well even after 8mo of therapy. I get the SCT is to improve quality of life but what if quality of life is ok right now. We are not sure where to turn to at this point and what road to take. Any advice is appreciated.