ME vs. MM: How Did I Get Here?
Many of the topics I write about start out as random things in my life that eventually grow into a column. Sometimes the seed is planted by a comment someone makes, or perhaps something I read, or in at least one case by a dream.
The idea for this month's column came to me when I recently heard the song "Once In A Lifetime" by the Talking Heads, which includes the line "You may ask yourself, well, how did I get here?"
Or in other words, "Why do I have multiple myeloma?"
I would venture this is another question most of us ask soon after our diagnosis. I think I asked the question at my next appointment after being diagnosed, and the doctor basically said "We don't know what causes multiple myeloma. It could be genetic, but given the evidence, it's more likely due to environmental causes."
I'm of two minds when it comes to finding out what caused my multiple myeloma. The practical, and admittedly cynical, part of me says “What difference does it make? You have it, so deal with it.” However, the inquisitive part of my mind can't quite let go of wondering what caused my cancer and whether it could have been avoided. I would also expect finding the cause would help with finding a cure.
Most of the information I've come across supporting a genetic cause, or at least a genetic connection, is based on the chromosomal abnormalities that tend to be present in patients with multiple myeloma. However, this almost appears to be a chicken-or-egg issue as to whether multiple myeloma causes the abnormalities, or whether the abnormalities cause the multiple myeloma.
For example, research presented at the 17th Congress of the European Hematology Association in 2012 indicated more than half of myeloma patients acquire additional chromosomal abnormalities over time (see related Beacon news). Does this then indicate abnormalities are spawned by the multiple myeloma? Also, what about patients that don't exhibit any of the abnormalities (such as myself)? What causes our disease?
Conversely, findings published in November of 2011 from a study by British and German researchers comparing the human genome of people with and without multiple myeloma report that people with either of two particular genetic variations have a 30 percent to 40 percent greater chance of developing myeloma than people without the variations (see related Beacon news). This would seem to indicate the variations may at least be a contributing factor to acquiring the disease.
On a related note, I have recently been reading the book "The Emperor of All Maladies: A Biography of Cancer" by Siddhartha Mukherjee, which among other things, explores the history and characteristics of cancer. One notable point that the author makes is that mutations are constantly taking place within our body, and it's a testament to our body's defense mechanisms that we aren't riddled with cancer.
So what causes the right conditions to occur, the right mutations to survive, that lead to multiple myeloma? Is this where environmental factors come in?
Consider all the substances we're exposed to over the course of our life. Perhaps one by one, they take up residence and hide in obscure places in our body unnoticed and benign until the right combination exists that leads to the mutation for multiple myeloma.
This is one area where I haven't been able to find much evidence of research. Are researchers collecting detailed environmental history from patients to look for common contributing factors?
In my case, no one has ever delved into my background for possible factors. I think back over my life and wonder about the things I've been exposed to. For example,
- Parents and friends that were smokers
- A few recreational drugs in my late teens and early twenties
- Working on a hot tar roofing crew for three summers (not only exposure to the tar, but also some of the crap we ripped off old roofs such as the thick green dust on a foundry roof)
- Paints, solvents, and other chemicals associated with home building, demolition, and repair
- Paints, solvents, lubricants, fillers, etc. associated with car maintenance and repair
- Fertilizers, herbicides, and insecticides used around the house
What combination of these may have contributed to getting this disease?
For a short time after being diagnosed, my wife and I dwelled on what the cause could be, but in the end, my practical and cynical side won out and we felt our time could be better spent looking forward rather than back.
I hope that researchers continue to try to find the cause, and when and if they do, that it would help towards finding a cure. For me, while I'll never completely let it go, my time is better spent on other topics.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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Thanks for another great read, Kevin!
Like you, I quickly gravitated from why (or how) did I get multiple myeloma to 'I'd better get on the stick and start sparring with this beast'.
On the faith side, I never asked God 'Why me?'. Instead, I expressed gratitude privately in that I would take this on a hundred times over rather than have my wife or a family member or a friend have to face it. Interestingly enough, many of them have said that they'd gladly take it from me and bear the burden themselves. Sometimes I think that caregivers have the thornier end of the stick.
I hope that I'm around when some investigator, somewhere, shrieks 'Eureka! So THAT'S what causes myeloma!' or, even better, when they figure out a cure. I hope that you are around, too. Thanks, again!
Hi Kevin,
Thanks for all of the interesting thoughts on the causes of myeloma. I think that in some jurisdictions myeloma has been recognized as an 'occupational hazard' sort of cancer, firefighting for example, and I have read here that in some cases in the military, in the handling of poisonous chemicals. I have also been exposed to carcinogens in my life. I guess what I take from that now is to avoid those chemicals as much as possible! I don't use bug spray any more, for example. Fortunately, all of our city now seems to have regulations against smoking indoors, even in restaurants. (The only 'downside' of that is that now people just throw their cigarette butts away, and dogs and other animals eat them sometimes). I feel sorry for people whose jobs require them to handle poisonous substances, without appropriate safety gear! Probably all of us in this industrial society have been exposed to some levels of carcinogens.
But what I always found puzzling was that, given that myeloma is not infectious, why does one's system react to carcinogens or mutations in the same way as another patient? When you think about it, there is absolutely NO connection between patients, and yet they react in similar ways. I guess that is one of the 'unanswered questions of the universe' in my life! I need to learn more about biology. Thanks for mentioning the book. I will get it from our local library!
Kevin,
I was thinking of that same Talking Heads song and verse when I went into the infusion medicine ward for the first time and was sitting in the chair taking in my surroundings while getting Velcade.
I found much of the same information on the internet about what may cause multiple myeloma. No really clearly identified causes. I did find some articles over the last year that cited the following groups tend to have a higher propensity to develop multiple myeloma than the general population:
- Agriculture workers who work a lot of pesticides
- Petrolchemical Industry workers
- Shipyard workers
- Cosmetologist who work with a lot of hair dyes
- Exposure to high levels ionizing radiation (atomic bomb survivors)
Looking at my own potential environmental exposure factors, two stand out to me. I worked with nuclear submarine reactors in the Navy during my 20s and spent two years in a shipyard replacing a reactor core. The VA says there is no connection.
Hey Kevin, it's my understanding from what I have read shows that prolonged exposure to organic solvents is a high cause for developing multiple myeloma. I was diagnosed in January 2011 and I have done a lot of reading on the subject and of course I was a paint chemist for years and I was exposed to organic solvents everyday in the lab and plant. I should have wore a mask, but I was hard-headed. So based on what you have said, it could be that your exposure to organic solvents may have been a factor.
Hope all goes well for you, as we both travel down that road of treatment.
"This is not my beautiful wife ... this is not my beautiful house ..." Classic song, million-dollar question. Which environmental exposure is the real culprit?
I have a long list of suspects in my own case:
- Grew up in the general area of the Love Canal and during the active Western New York Rust Belt years of industry
- Lived for 13 years in a turn of the 20th century apartment with layers of paint (loaded with lead and decay, I'm sure)
- Lived in a house just a few miles from a closed nuclear power plant (I think of gardening in the soil there, eating vegetables from the garden)
- Exposure to toxic art materials (my hands once turned balck after mixing some ceramic glaze with my bare hands)
- A basement apartment once flooded with sewerage water
- A work office once flooded with sewerage water
Good topic!
I also tried that line of thought. No one in my family (parents, grandparents, aunts or uncles that I know of) had cancer except my baby sister. She has Stage 4 breast cancer that had gone to her bones when I was diagnosed. And is currently fighting her second relapse! I was told that mine is the genetic error. And it is the most aggressive type of multiple myeloma. And rare for a female to have this at 55 years of age.
So staying in remission is so important. I am on maintenance now with Revlimid for 21 days and off for 7. I take blood thinners, and methadone for the bone pain. That is how we found my cancer, I broke a vertebrae and is was so unusual that they did a biopsy. I too worked in housing construction industry, I measured houses for flooring, carpet, wall covering, ceramic tile, etc. I was in contact with adhesives and fresh vinyl flooring and carpet I had an office right next to the new flooring, and I handled it daily along with wall paper and the glues used to install Vinyl composite tile and sheet vinyl. So maybe the fumes did the damage? I had been out of that industry for 10 years prior to my discovery. So like others, it may be what we have been exposed to that damaged our chromosones! I do not know how others (this was a family business) fared. I have not spoken to them in years, but I do know that the decorator I worked for is ill and it acts and seems like multiple myeloma. So it's possible multiple myeloma and I have mentioned it to her family to have her checked out.
I too had similar queries.
I read recently that the biggest cluster of multiple myeloma is among the firemen who were at the Twin Towers on 9/11, which supports the chemical theory.
I have always lives in the country, just London for under 1 year 50 years ago. The last 30 years have been near a golf course, and I do wonder what they use in the way of weedkillers.
There had been no cases of cancer in my family until the last few years then straight on top of each other I was diagnosed with multiple myeloma, my son with a stage 2 melanoma (and he has always avoided the sun), and my mother with a basal carcinoma.
I have smoldering multiple myeloma for 3 years. Your article made me remember that I grew up in a small apartment with my mother, father and sister each smoking 3 packs a day.That would be the only exposure I can think of. However, most of my family (gandparent, mother father, cousins, and aunts) all had some form of cancer. So I wonder, which is it.
Sean,
My wife has said many times she wishes she could take this burden from me. Like you though, if there were a choice, I’d take it every time rather than see someone close to me have to deal with it.
Nancy, Eric, George, Pat, Anita,
I’ve come across a few articles suggesting occupational connections to multiple myeloma, though not all the ones that have been mentioned. Based on your responses (admittedly not a significant statistical sampling), there definitely seems to be a strong connection to chemical exposure. In the past, I think we just didn’t understand the danger well enough, and in my case at least, probably didn’t take it seriously enough when warned. As people become more knowledgeable of the dangers and safeguards are put into place, I wonder if we’ll see a decrease in multiple myeloma in the future, particularly if most of us afflicted now are paying the price for exposure 20, 30, or perhaps even 40 years ago.
Mary,
As with the others, you seem to share a similar connection with exposures to toxic chemicals. Like you, there is very little incidence of cancer in my family. One of the studies I referenced in my column also indicated there is an increased risk that family members of myeloma patients could also develop it. I've also read this elsewhere. However, I wonder whether that's due to sharing the same environment instead of being a genetic or inherited condition? I sure hope treatment goes well for you and your sister.
Gloria,
I think everyone has come to recognize the health hazards associated with smoking. My parents were 1-2 packs a day until they quit when I was in my teens, but then I had friends who were also smokers. Given how many in your family have been afflicted with cancer, I'm sure that was a contributing factor for them and for you. Given how much of society smokes though, I personally think there must be other factors involved in multiple myeloma, otherwise why don’t we see more instances of it?
As others, I have read about the same occupational connections to chemicals. I was a screen printer for many years and also worked in the housing industry as a builder. Looking back, there is no way for me to even estimate how many different chemicals I was exposed to. Adhesives, inks, ink additives, solvents, paints, thinners ... it boggles my mind. *sigh*
I wish each of you the best as we battle this monster!!
Hi Kevin,
This is an interesting article, I was just discussing this the other day. I was a cosmetologist. I have read that they believe that could be a link, however, until my diagnosis I have never even heard of multiple myeloma. I know hundreds of cosmetologists who themselves know hundreds of cosmetologists and still never heard of anyone else in the field with this. I guess we will never know. On another note, if I were to now get a secondary cancer, I would have a lot of radiation to blame that on.
I think about this a lot. My children's father, to whom I was married for 14 years, died in March 2009 from multiple myeloma. He had a very aggressive disease which presented with hypercalcemia and renal failure. Despite treatment with chemo and radiation (he was never a candidate for bone marrow transplant), he died 9 months after being diagnosed.
I was diagnosed in April, 2011 after a routine blood test revealed high calcium and creatine levels. I had Stage 4 renal failure. I felt fine. Bone marrow biopsy confirmed multiple myeloma and I started treatment with Velcade and dex. That was dicontinued due to severe neuropathy. I started Revlimid but had to discontinue because of blood clots. I have been off chemo for almost a year and feel OK. Kyprolis is in my future.
This is odd and I can not come up with anything. Where we lived? What we ate? No chemical exposure really, maybe some DDT.
Scott, Christine,
Looks like the two of you provide additional support for the chemical / environmental theory. The interesting question, which Christine raises, is given how many others have been exposed to similar toxic chemicals, what's different about us that causes us to develop multiple myeloma, while so many others do not. This is where I think exposure to combinations of chemicals, and genetic factors may come into play.
Mary,
I agree it's very odd that both you and your husband developed multiple myeloma. I wonder if it's just coincidence, of is there a common factor involved. My personal suspicions are that the contributing factors occur over a long period of time, until the right combination(s) occur. Perhaps in your cases, both you and your husband acquired many of the factors before being married, and the proverbial "last straw" was something in your environment after marriage. These are some of the questions I would hope could be answered given further research. If you do eventually take Kyprolis, I hope it works for you. I've been on carfilzomib (Kyprolis), dex, and Revlimid for 20 cycles (four cycles still to go) with great results.