I remember the day I was diagnosed in 2008 -- on my birthday. I had worked oncology for 5 years in 80's in a hospital. I'd never heard of the word. I was in total shock.
I was what you might call a Health Nut. I walked 3 miles every other day, no red meats, ate my veggies and fruits, never been around chemicals, pesticides, etc. Dyed my hair blond, not black.
Seemed as if -- and to this day -- no one was interested in any history. I was never asked much. Totally surprised. My 63 year old brother was diagnosed 4 years later with it was dead in 6 months. No one asked the first question. I tried talking about it, they weren't interested. He was exposed to Agent Orange in Vietnam war. Well, I wasn't.
It's no wonder there's no cure. Let's get a little curious about it. Take a little history from those who have it. There's too money made off it. I personally don't ever think there will be a cure.
I can only imagine how many thousands out there right now being treated for arthritis who have it. That's what they tried to do with me. Thank God, with some medical background, I wouldn't accept it.
If it sounds like I'm fed up, tired, and had enough, you're right. This has been going on for almost seven years. Can't see it's came much farther except left me with an awful load of side effects and gave me stomach cancer from chemos. I'm tired!
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Re: Fed up, tired, and had enough of multiple myeloma
Madison,
Sounds like you may not have gotten into a good program. Myeloma has made more progress than any other cancers. With my husband, they took all sorts of information. They wanted every address of where he had lived, every job he had every worked, family history – over an hour of questions. This was from a group that traces myeloma patients.
Sounds like you may not have gotten into a good program. Myeloma has made more progress than any other cancers. With my husband, they took all sorts of information. They wanted every address of where he had lived, every job he had every worked, family history – over an hour of questions. This was from a group that traces myeloma patients.
Re: Fed up, tired, and had enough of multiple myeloma
Very sorry to hear of your understandable frustration. I'm also someone who is in excellent shape and extremely healthy except for this one, rather overwhelming, issue.
Be assured, though, that much research has been done in trying to link myeloma to chemical exposure, genetics, etc. To my knowledge, there's little that's been proven to be associated with it (although I can't claim to be up on every study - maybe there's something I've missed).
Also, as Mary indicated, progress over the last ten years on treating myeloma has been amazing and there's so much more that will happen in the next ten years. It's hard to believe that there won't be a functional cure by then. It will be too late for many of us, but at least we can take some comfort in knowing that others will not be put through this particular wringer.
Be assured, though, that much research has been done in trying to link myeloma to chemical exposure, genetics, etc. To my knowledge, there's little that's been proven to be associated with it (although I can't claim to be up on every study - maybe there's something I've missed).
Also, as Mary indicated, progress over the last ten years on treating myeloma has been amazing and there's so much more that will happen in the next ten years. It's hard to believe that there won't be a functional cure by then. It will be too late for many of us, but at least we can take some comfort in knowing that others will not be put through this particular wringer.
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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
Re: Fed up, tired, and had enough of multiple myeloma
I would love it if there were a way to link exposures to environmental exposure. I very strongly suspect my husband's myeloma is related to 9/11. He worked just outside the considered exposure zone. He is also a Con Ed worker who for the last 25 years has worked in the electrical generating stations, thereby being exposed to many toxins, such as fuels and asbestos. My husband was always the picture of health and, even now, to look at him you would never know he has such a deadly disease.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Fed up, tired, and had enough of multiple myeloma
Cancer is, I believe in a majority of cases, simply a genetic lottery of sorts.
"Bad Luck of Random Mutations Plays Predominant Role in Cancer, Study Shows," Johns Hopkins University press release, Jan 1, 2015 (link)
I know this is not what any of us like to hear, but sometimes our DNA becomes "corrupted," simply because one of our genes has mutated due to sheer bad luck, and in turn causes a "coding error" in one our cells that somehow finds a way to evade our immune system. BOOM. Proliferation. No carcinogens involved.
S.
"Bad Luck of Random Mutations Plays Predominant Role in Cancer, Study Shows," Johns Hopkins University press release, Jan 1, 2015 (link)
I know this is not what any of us like to hear, but sometimes our DNA becomes "corrupted," simply because one of our genes has mutated due to sheer bad luck, and in turn causes a "coding error" in one our cells that somehow finds a way to evade our immune system. BOOM. Proliferation. No carcinogens involved.
S.
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Fed up, tired, and had enough of multiple myeloma
Hi Madison and all, I am sorry that your seven year 'journey' with multiple myeloma has been really difficult! I agree that more epidemiological studies relating multiple myeloma to environmental carcinogens would be helpful. Such studies have been done at least in some places, and they can show 'clusters' of multiple myeloma patients, who can then be further studied to try to show if these groups of patients are having genetic or environmental similarities. Agent Orange exposure has been implicated in lots of cancers.
I thought I would post this CNN article linking exposure to toxic dust from the 9/11 disaster to the multiple myeloma contracted by some firefighters. I think I read somewhere that the firefighters or their surviving families are eligible for some sort of compensation because of the link between multiple myeloma and the 9/11 tragic event.
Steve, I most certainly agree that getting cancer is 'bad luck', but the corollary that there are no risk factors 'out there' in the environment is I think not true!
I thought I would post this CNN article linking exposure to toxic dust from the 9/11 disaster to the multiple myeloma contracted by some firefighters. I think I read somewhere that the firefighters or their surviving families are eligible for some sort of compensation because of the link between multiple myeloma and the 9/11 tragic event.
Steve, I most certainly agree that getting cancer is 'bad luck', but the corollary that there are no risk factors 'out there' in the environment is I think not true!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Fed up, tired, and had enough of multiple myeloma
I'm tired and fed up also. It's been 3 years since our daughter was diagnosed with myeloma at the age of 32. I grieve every day, not for what her life used to be, but for everything she has to go through. We had never heard of this disease, she was never around chemicals. It just came out of the blue to a healthy, vibrant young woman.
As many of you know, she did induction, a stem cell transplant, Revlimid maintenance, and then relapsed about 16 months after the transplant. She tried Kyprolis (carfilzomib), but it didn't work. She was planning on going through with an allo transplant, but that is put off because her body is not up to it and her numbers are not down.
She is starting a clinical trial on Tuesday at Penn so she is back to the cocktail of drugs, which will probably have nasty side effects. I'm just her mother, not the person going through all this.
I recently discovered that I am looking for a cure and there is no cure. I have known there is no cure since diagnosis, but can't stop searching for one. So, from now on, I am going to try to take one trial at a time and hopefully one will work. But I am still fed up and tired.
Thank you for listening to my rant. This is me, not my daughter. She deals with everything with no complaints and a smile.
As many of you know, she did induction, a stem cell transplant, Revlimid maintenance, and then relapsed about 16 months after the transplant. She tried Kyprolis (carfilzomib), but it didn't work. She was planning on going through with an allo transplant, but that is put off because her body is not up to it and her numbers are not down.
She is starting a clinical trial on Tuesday at Penn so she is back to the cocktail of drugs, which will probably have nasty side effects. I'm just her mother, not the person going through all this.
I recently discovered that I am looking for a cure and there is no cure. I have known there is no cure since diagnosis, but can't stop searching for one. So, from now on, I am going to try to take one trial at a time and hopefully one will work. But I am still fed up and tired.
Thank you for listening to my rant. This is me, not my daughter. She deals with everything with no complaints and a smile.
Re: Fed up, tired, and had enough of multiple myeloma
Multiple myeloma does appear to be very random. In my case, I am the only one on either side of our family who has ever had it. Both my mother and father are in their late 80s, and their parents lived into their late 70s or longer. My mom's parents died of coronary disease, were raised and worked on a farm, and consumed a lot of milk, fat, pork and other things that are now considered bad for the heart. Cancer is not a common trait in our family tree, although there have been some who have died from it.
I have not been exposed to Agent Orange, but have been exposed to some chemicals, as all of have.
I believe that something set off the myeloma. You can have 10,000 people exposed to certain chemical agents or pesticides; 9,990 don't have any issues, but 10 may develop some form of cancer. What in the genetic makeup of those 10 caused them to develop it? That is what we don't know. I have also read that, in some cases, it could be a reaction to a viral infection. Again, 99.9% of people who catch the virus have no impact, but 1% develop cancer.
I gave up trying to figure out how I got it. It's irrelevant now anyway. What is relevant is trying to live life to its fullest every day and not feel bitter or deflated about it.
I have decided to go to Italy this year with a group from my bike club. I normally would have waited until after I retired, but that is a few years off and I might relapse anytime. So I am going now while I can still enjoy it.
Ron
I have not been exposed to Agent Orange, but have been exposed to some chemicals, as all of have.
I believe that something set off the myeloma. You can have 10,000 people exposed to certain chemical agents or pesticides; 9,990 don't have any issues, but 10 may develop some form of cancer. What in the genetic makeup of those 10 caused them to develop it? That is what we don't know. I have also read that, in some cases, it could be a reaction to a viral infection. Again, 99.9% of people who catch the virus have no impact, but 1% develop cancer.
I gave up trying to figure out how I got it. It's irrelevant now anyway. What is relevant is trying to live life to its fullest every day and not feel bitter or deflated about it.
I have decided to go to Italy this year with a group from my bike club. I normally would have waited until after I retired, but that is a few years off and I might relapse anytime. So I am going now while I can still enjoy it.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Fed up, tired, and had enough of multiple myeloma
Nancy,
No one is stating that there are "no" carcinogens in our environment.
If you use the link to read the Johns Hopkins article I think you'll get a better understanding of the term "bad luck" within the context of the various factors involved in the development of cancer.
Best,
S.
No one is stating that there are "no" carcinogens in our environment.
If you use the link to read the Johns Hopkins article I think you'll get a better understanding of the term "bad luck" within the context of the various factors involved in the development of cancer.
Best,
S.
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Fed up, tired, and had enough of multiple myeloma
Here is another article about the 'good luck/bad luck' ideas of cancer, Steve.
"Most cancer types 'just bad luck' ", BBC, Jan 2, 2015 (link)
It seems to be a discussion ongoing right now in the media. I still think that any sort of having cancer is 'bad luck', but I think that the articles are pointing out that the 'bad luck' might be more of random gene mutations. They don't deny that environment and lifestyle play a role in it though.
Thanks for getting me to read the article you posted! I took the 'bad luck' more personally, I think!
"Most cancer types 'just bad luck' ", BBC, Jan 2, 2015 (link)
It seems to be a discussion ongoing right now in the media. I still think that any sort of having cancer is 'bad luck', but I think that the articles are pointing out that the 'bad luck' might be more of random gene mutations. They don't deny that environment and lifestyle play a role in it though.
Thanks for getting me to read the article you posted! I took the 'bad luck' more personally, I think!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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