Well, I am all in that benzene boat, as my husband retired as a W4. Flying both fixed wing and rotor wing, his flight suits had JP-4 smell and saturation everyday. Hot refuels also. Agent Orange has benzene and has been linked as presumptive with Vietnam era vets with multiple myeloma. My husband went in the Army the year after Vietnam. We have had two different myeloma specialists write letters stating that they thought the benzene in the fuel was the cause of my husband's myeloma. They even cited the VA's own cases along with others, as this should fall within the benefit of doubt and the veteran.
What we are running into is they are harping on the latency period. We all know multiple myeloma can have a long one. Latency period, Vietnam era benzene Agent Orange, ok, but one year post, not. Benzene is benzene. My husband retired in 1997. It makes no sense they ok it for the link during Vietnam but post Vietnam and the shorter latency not.
I have also been a nurse for 32 years now and the C&P exam he had for this was a joke. 45-second physical with rest on the computer.
So now our 2nd appeal is headed to DC. You cannot say there is some evidence linking benzene with multiple myeloma, then not apply the benefit of doubt the veteran deserves. Even our VA represetnative was shocked by their reply.
Forums
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DaleJC28117 - Name: Dale
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 57
Re: Hypothetical causes of multiple myeloma?
Dr. Edward Libby wrote:
I think it is also interesting to note that there are historical examples, for example, ancient Egyptian and Roman skeletons showing examples of myeloma. I think there are examples in Europe going back over 4000 years. Also, based on some work in 1901-5, the distribution was considered not to have changed much. Also, as Dr. Libby says, we are living much longer, and that can have a big impact in terms of the number of cases we might see today. So it looks like myeloma has been around for a while.
Age is clearly a major contributor. There are many many epidemiological studies that unequivocally show that myeloma is a disease of older people. The average age of diagnosis in all of these studies is approximately 70. Yes there are younger patients but the younger you are the less likely you are to get myeloma.
There is an increasing awareness of familial contributions to developing the disease. Other potential contributing causes include environmental exposures and chemical exposures. The evidence for a direct relationship between radiation and myeloma is weak. There are even studies suggesting that obesity increases the risk. It may be multifactorial.
At this time there is no clear unequivocal evidence that any particular exposure leads directly to multiple myeloma. We have much to learn.
I think it is also interesting to note that there are historical examples, for example, ancient Egyptian and Roman skeletons showing examples of myeloma. I think there are examples in Europe going back over 4000 years. Also, based on some work in 1901-5, the distribution was considered not to have changed much. Also, as Dr. Libby says, we are living much longer, and that can have a big impact in terms of the number of cases we might see today. So it looks like myeloma has been around for a while.
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wenlock00 - Name: Wenlock00
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: Hypothetical causes of multiple myeloma?
Hi All;
I was diagnosed with MGUS four months ago, several of my FISH results show I am a candidate for fast escalation and very poor survivability. That said, I cannot find any link to some of the exposures listed by others on this post, save one. In 1967, I did not come in direct contact with Agent Orange, but it was sprayed in close proximity. Not sure if my limited contact is a factor.
I also seem to have fallen in the optimal age group, turned 70 last July. In fact, my yearly checkup found a problem which led me to a myeloma specialist for evaluation.
I was diagnosed with MGUS four months ago, several of my FISH results show I am a candidate for fast escalation and very poor survivability. That said, I cannot find any link to some of the exposures listed by others on this post, save one. In 1967, I did not come in direct contact with Agent Orange, but it was sprayed in close proximity. Not sure if my limited contact is a factor.
I also seem to have fallen in the optimal age group, turned 70 last July. In fact, my yearly checkup found a problem which led me to a myeloma specialist for evaluation.
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penbed - Name: Jack D. Lovett
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 70
Re: Hypothetical causes of multiple myeloma?
If, and I stress if, multiple myeloma starts with an unrepaired mutation of one cell that clones itself (monoclonal), etc., then isn't some of the age effect simply how long it takes for a significant number of clonal cells to cause problems or be detectable in a lab test for those who are otherwise asymptomatic? Age of the rest of the body, specific activity of the mutation, and "genetics" no doubt play a role in the effects. Many, many reasons for individual cell mutations of all kinds. It turns out, for example, that "lung cancer" as a description is as general as "lymphoma."
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
Re: Hypothetical causes of multiple myeloma?
gardengirl - Roundup had dioxin in it. It was basically Agent Orange. I have heard that at some point they took out the dioxin and put in glyphosate instead. That has its own issues.
In Vietnam, we were exposed to a lot of Agent Orange as well as Agent White, Red, Blue, etc. They all are related and got their names from the color of the band painted around the drum. A lot of guys from my company have gotten cancers that are believed by the VA to have been caused by exposure, Currently, I am waiting for the next round of tests in early January to see if my M protein level has gone up more. The tests from last July had an IgM/PLAS level of 775 (normal is 30-190).
When I was diagnosed with prostate cancer the PAS level that the doctors worry about is 5.0. My level was 3.8 on the day of surgery and it was stage 4 that had moved into other organs. I am tracking the cancers that the guys in my company have gotten and this low level is not unusual for us.
In Vietnam, we were exposed to a lot of Agent Orange as well as Agent White, Red, Blue, etc. They all are related and got their names from the color of the band painted around the drum. A lot of guys from my company have gotten cancers that are believed by the VA to have been caused by exposure, Currently, I am waiting for the next round of tests in early January to see if my M protein level has gone up more. The tests from last July had an IgM/PLAS level of 775 (normal is 30-190).
When I was diagnosed with prostate cancer the PAS level that the doctors worry about is 5.0. My level was 3.8 on the day of surgery and it was stage 4 that had moved into other organs. I am tracking the cancers that the guys in my company have gotten and this low level is not unusual for us.
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EoinDubh - Name: Michael Black
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2017
- Age at diagnosis: 72
Re: Hypothetical causes of multiple myeloma?
In this study, the State of Illinois found some correlation between living on a farm as a child and myeloma later in life:
Alo, CJ, et al, "A Case-control Study of Multiple Myeloma in Decatur, Illinois", 1997 (PDF with full text of study)
Abstract:
Background: A cancer cluster investigation that was conducted in ZIP code 62521 of the city of Decatur in Macon County, Illinois, showed a statistically significant excess of multiple myeloma cases for residents of the study area from 1986 through 1992. The cases did not cluster in any one neighborhood within ZIP code 62521, but followed the distribution of the population within the entire study area. When current occupations and industries were assessed, eight of the 13 cases had an occupation with the potential for exposure to substances known to be associated with multiple myeloma. To determine whether cases, who were residents of Decatur, Illinois, were more likely to have worked in an industry or occupation whose exposures are associated with the development of multiple myeloma and whether cases were more likely to have been long-term residents of the city of Decatur, Illinois, a case-control study was conducted.
Method: A case-control study was designed with two controls selected for each case. Controls were matched to the case by sex and year of birth (±five years). Cases and controls were interviewed on residential status and occupational history for the last 35 years, medical history, use of medications and hair dyes, exposure to chest and dental X-rays, and radiation therapy.
Results: Fifty-eight percent of the cases agreed to participate in the study and participation rates varied by ZIP code, age, and gender. One factor found to be statistically significant was living on a farm during one's lifetime. However, none of the cases was a farmer, suggesting that cases might have lived on a farm in their childhood. In addition, the trend for increasing length of residence IN Decatur and increasing risk of multiple myeloma was significant.
Conclusion: Although the study results did not provide evidence to support an occupational risk factor for multiple myeloma in Decatur, it was not possible to exclude the possibility that environmental factors may have an influence on multiple myeloma in the Decatur area.
Alo, CJ, et al, "A Case-control Study of Multiple Myeloma in Decatur, Illinois", 1997 (PDF with full text of study)
Abstract:
Background: A cancer cluster investigation that was conducted in ZIP code 62521 of the city of Decatur in Macon County, Illinois, showed a statistically significant excess of multiple myeloma cases for residents of the study area from 1986 through 1992. The cases did not cluster in any one neighborhood within ZIP code 62521, but followed the distribution of the population within the entire study area. When current occupations and industries were assessed, eight of the 13 cases had an occupation with the potential for exposure to substances known to be associated with multiple myeloma. To determine whether cases, who were residents of Decatur, Illinois, were more likely to have worked in an industry or occupation whose exposures are associated with the development of multiple myeloma and whether cases were more likely to have been long-term residents of the city of Decatur, Illinois, a case-control study was conducted.
Method: A case-control study was designed with two controls selected for each case. Controls were matched to the case by sex and year of birth (±five years). Cases and controls were interviewed on residential status and occupational history for the last 35 years, medical history, use of medications and hair dyes, exposure to chest and dental X-rays, and radiation therapy.
Results: Fifty-eight percent of the cases agreed to participate in the study and participation rates varied by ZIP code, age, and gender. One factor found to be statistically significant was living on a farm during one's lifetime. However, none of the cases was a farmer, suggesting that cases might have lived on a farm in their childhood. In addition, the trend for increasing length of residence IN Decatur and increasing risk of multiple myeloma was significant.
Conclusion: Although the study results did not provide evidence to support an occupational risk factor for multiple myeloma in Decatur, it was not possible to exclude the possibility that environmental factors may have an influence on multiple myeloma in the Decatur area.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Hypothetical causes of multiple myeloma?
What about those that don't fit any of the things talked about? When my daughter was diagnosed at the age of 32, they could not give us any possible reason she got this disease. She had not been in Vietnam, she was never at Camp Lejuene, her job was in an office. I had never heard of multiple myeloma. As far as we know going back 3 generations, no one in our family had this disease. I feel like finding out the cause could at least help in the search for a cure.
Re: Hypothetical causes of multiple myeloma?
The official word is that there is no established cause of multiple myeloma. The associations mentioned - to benzene exposure, radiation, heredity, etc., are all weak.
About three months ago the New York Times cited a study that claimed that most – specifically 66% – of all cancers are in fact caused by random errors in DNA copying during normal cell development or replacement.
Moreover, cancer in many (if not all) of its forms has been found in ancient corpses, preserved either through intentional or chance mummification. These human remains date from periods predating today’s scourge of pollution of our environment and our food by hundreds and thousands of years.
About three months ago the New York Times cited a study that claimed that most – specifically 66% – of all cancers are in fact caused by random errors in DNA copying during normal cell development or replacement.
Moreover, cancer in many (if not all) of its forms has been found in ancient corpses, preserved either through intentional or chance mummification. These human remains date from periods predating today’s scourge of pollution of our environment and our food by hundreds and thousands of years.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Hypothetical causes of multiple myeloma?
EoinDubh wrote:
I really feel like I have to correct something here. Roundup has never had dioxin in it and is a chemical which is completely unrelated to Agent Orange. The problem with Agent Orange was the 2,4,5-trichlorophenoxyacetic acid (2,4,5-T), which was one of its components. This chemical contained trace levels of dioxin as a manufacturing byproduct, and trace levels are all you need to cause problems when it comes to dioxin. Roundup (glyphosate) is a completely different thing. There's a lot of controversy now over health problems that may be associated with Roundup exposure and it may well be that these are real, so this is not to say that Roundup's not a problem. It's just a very different chemical from Agent Orange. Roundup wasn't even discovered until 1970, which was near the end of Agent Orange use in Vietnam.
If I remember correctly, the manufacturing process for 2,4,5-T was changed once it was found to contain dioxin in order to eliminate it as an impurity but that was well after the end of its use in Vietnam.
Sorry about the digression! More on topic with this thread, I wonder if my own myeloma might have been caused by exposure to chloriinated solvents. Early in my career, I worked a lot with methylene chloride and I had several occasions in which I ended up with a faceful of the stuff. I also found out after I was diagnosed that my grandfather had myeloma. He was treated with radiation but that was it. His heart was bad and I think they knew it, so there was no attempt to get aggressive with the multiple myeloma. He died of a heart attack well before the myeloma got out of control.
Roundup had dioxin in it. It was basically Agent Orange. I have heard that at some point they took out the dioxin and put in glyphosate instead. That has its own issues.
I really feel like I have to correct something here. Roundup has never had dioxin in it and is a chemical which is completely unrelated to Agent Orange. The problem with Agent Orange was the 2,4,5-trichlorophenoxyacetic acid (2,4,5-T), which was one of its components. This chemical contained trace levels of dioxin as a manufacturing byproduct, and trace levels are all you need to cause problems when it comes to dioxin. Roundup (glyphosate) is a completely different thing. There's a lot of controversy now over health problems that may be associated with Roundup exposure and it may well be that these are real, so this is not to say that Roundup's not a problem. It's just a very different chemical from Agent Orange. Roundup wasn't even discovered until 1970, which was near the end of Agent Orange use in Vietnam.
If I remember correctly, the manufacturing process for 2,4,5-T was changed once it was found to contain dioxin in order to eliminate it as an impurity but that was well after the end of its use in Vietnam.
Sorry about the digression! More on topic with this thread, I wonder if my own myeloma might have been caused by exposure to chloriinated solvents. Early in my career, I worked a lot with methylene chloride and I had several occasions in which I ended up with a faceful of the stuff. I also found out after I was diagnosed that my grandfather had myeloma. He was treated with radiation but that was it. His heart was bad and I think they knew it, so there was no attempt to get aggressive with the multiple myeloma. He died of a heart attack well before the myeloma got out of control.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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