MDS possible cause?

[HughHC]

My work station was next to a wall. On the other side of the wall (unbeknowst to me) was a transformer for the building. I was having problems with my computer and so the Company ordered a new one for me. The new computer also began to have strange problems and I kept sending it back for repair. They could not find anything wrong with it. Then I just by happenstance discovered the transformer in the other room (the room was not used for anything).

I then moved my work station to another part of my work room and the computer then operated perfectly.

I retired from this job in December 2003 but previously that year I began to show low blood counts in red, white and platelets. The numbers have been relatively constant. My hematologist felt that due to the relative constancy of my blood test results that it might "just be me". Finally I insisted that we explore this further and she ordered a bone marrow and bone biopsy. Those tests then reflected that I had MDS, This was in 2009. The blood tests still remain in a narrow range and although I experience fatigue, I fight it. I am approaching my 75th birthday.

What are the possibilities that some form of radiation from the transformer resulted in my developing MDS ?

Your thoughts would be appreciateed

[Greg H]

Hi Hugh!

Sorry to hear about your MDS diagnosis; but it sounds as though you have fairly stable disease, which is a very good thing.

The more I have read about MDS -- and about cancer generally -- the more all roads lead to a single fact: Cancer, MDS included, is about genetic mutations gone awry. Something causes a mutation, that messes up some signaling pathway for this or that vital process, and the whole snafu gradually snowballs until you wind up with a tumor someplace, or with messed up bone marrow.

The number of factors that can set off that initial mutation (or stoke the fire once the spark is lit) is legion: alcohol, tobacco smoke, pesticides, cured meat, smog, industrial chemicals, household chemicals, too much exposure to the sun, even unprovoked attacks by your own immune system . . . the list is literally endless.

The list is endless, in my understanding, because we are creatures prone to mutation. After all, it was successful mutations that got us walking upright and carrying around these big brains. The less successful mutations, unfortunately, mostly try to kill us.

It wouldn't surprise me a bit to find that the list of things that can cause mutations includes exposure to high voltage electrical fields, though I haven't run across any data on that specifically.

Most of what you read about factors linked to MDS cite only a few things: benzene, alcohol (though I have yet to find an actual study on that one), and previous cancer treatment with radiation or chemotherapy.

That's probably not a very satisfying answer, but I hope it's of some use. Here's hoping your counts remain manageable.

Take care!

Greg

[Marlene]

Hi Hugh,

My personal opinion is that it does/did play a role in all of this. My husband, who also had years of low normal count and even below normal counts at times was told "this must be normal for you". He was always very healthy, never on any drugs, exercised, etc. One and half years after starting a new job where his office was just outside high tension power line, his counts went downhill.

To this day, he feels that was the tipping point for him. We'll never be able to make a one to one causal relationship of the EMF to SAA, but none the less, it is one of the many potential influences contributing to the breakdown.

So if you were seated on the other side of a wall where a transformer was located, my two cents is that it did play a role.

There's a great book written by Dr. Becker called the Body Electric which you may enjoy reading. It focuses on his work in limb regeneration and eventually talks about the use of electricity in healing and how it can also cause disease.

[usaf1125]

MDS is not a cancer it is a desease of the autoimmune sytem. It is not curable, it is not genetic, it is not passed on to your children. It does not spread, it only effects the blood, it may progress to leukemia or maybe not. live your live for for tomorrow, it will progress no matter what you do. You can take medication to help forestall it, enjoy life and don't lose any sleep, it won't change anything

[knstone]

Many MDS doctors do feel MDS is a cancer. It is the result of mutated stem cells in the bone marrow like other leukemias and blood cancers. By definition it is not called a cancer until the blasts exceed 20% but may doctors do not agree with that definition.

It does affect the immune system but the the failure is in the bone marrow.

There are good drugs to control the disease, stay positive and find a good doctor to work with you.

[Greg H]

Hi all!

Most of the experts I've hear on the subject lately class MDS as a "Cancer." Even though it lacks a solid tumor, in many cases it works the same way as solid tumor cancers: mutant cells that refuse to die have their reproductive switches turned up past 11 and turn out other defective cells that gum up the works.

Some MDS may also be an autoimmune disorder, which is why some MDSers respond to immunosuppressive therapy.

And, while most experts will say you didn't inherit MDS from your parents and can't pass it along to your kids, we are just now learning that some folks with bone marrow disorders do in fact have a genetic defect that shortens the telomeres on their chromosomes, and, in some cases, those genetic defects do run in families.

MDS is a lot of things, which is why you will usually hear any doc doing a presentation on MDS begin the speech with a definition that starts out like this: "MDS is a cluster of related disorders characterized by ineffective hematopoiesis . . . ." Much of the research on MDS these days is about teasing out the strands that make up that cluster -- that is, distinguishing the different kinds of MDS.

Still, USAF1125 makes a good point that the search for a "cause" in an individual case, if it becomes obsessive, can get in the way of getting on with the healing.

There's no doubt that benzene exposure has been linked to MDS. Everything else is a guess. And, when we are thinking about causes, we often focus on the extraordinary rather than the ordinary. For example, someone who helped clean up an oil spill one summer might focus on that, because it's unusual, rather than on the nitrate-cured bacon he ate every morning for breakfast for 40 years, or the five beers he had after dinner every night for 30 years.

If MDS is mostly about genetic mutation, like other cancers, there are lots and lots of things in the ordinary life of a modern Western human being that can make genes mutate. And, odds are, except in extraordinary cases, the mutagen to blame is one to which the patient was exposed over a long period of time.

My two cents.

Take care!

Greg

[soft92evo]

well having worked for western electric for 7 yrs, then southern bell t&t(Bell south) in a central office enviroment (using chemicals to clean and exposure to emf-go figger)All of this for a total of 49 yrs. march 09 retired and moved to Knoxville,tn. My wife is a runner and I used to put in a good crisp walk, but it became more difficult,etc. Went for a physical, anemic, put into hosp next day, rcvd 3 blood units and all tsts were administered. on aug 26-11 after bmb.....mds.....just finishing 1st cycle of revlimid and recv procrit weekly..........lots to learn and I am reading and listening.

[cathybee1]

Thanks to all of you for posting here...the difference of points of views helps educate us all.

[Marlene]

Came across this study on another chemical, and other glycols, linked to bone marrow toxicity. It's abbreviated name is EGMME. When they examined co-workers of someone who had SAA, they found the peripheral blood levels of the co-workers to be OK but not the bone marrow. This was in the printing industry. More importantly, it just confirms there are many toxins people are exposed which cause harm in the long run.

John worked with lots of chemicals in his 20's and 30's. He always felt fine and never exhibited any health problems except that his CBC always showed him to be border line anemic to anemic from time to time, and low-normal platelets. He was told this must be normal for you. You have to wonder if his bone marrow was damaged back then but did not completely fail until he was 50 yrs old.

http://oehha.ca.gov/air/chronic_rels/pdf/109864.pdf

[otryingo]

Hi - My father was diagnosed with myelodysplasia about a year ago. He has been healthy as a horse his whole life and dances 3-4 times per week. He has never used medications (not even aspirin) and would rarely see a doctor. He decided to get a routine checkup about 3 years ago and they put him on Lipitor. I've been suspicious for a while that the Lipitor could have caused the problem with the myelodysplasia and just did a google search to see if there have been any studies connecting the two. I did come across some that seem to be finding a connection. Does anyone have any experience with this? An example of what I'm coming across is in the following link.

http://www.ehealthme.com/ds/lipitor/...astic+syndrome


Thanks!

Originally Posted by Greg H

Hi Hugh!

Sorry to hear about your MDS diagnosis; but it sounds as though you have fairly stable disease, which is a very good thing.

The more I have read about MDS -- and about cancer generally -- the more all roads lead to a single fact: Cancer, MDS included, is about genetic mutations gone awry. Something causes a mutation, that messes up some signaling pathway for this or that vital process, and the whole snafu gradually snowballs until you wind up with a tumor someplace, or with messed up bone marrow.

The number of factors that can set off that initial mutation (or stoke the fire once the spark is lit) is legion: alcohol, tobacco smoke, pesticides, cured meat, smog, industrial chemicals, household chemicals, too much exposure to the sun, even unprovoked attacks by your own immune system . . . the list is literally endless.

The list is endless, in my understanding, because we are creatures prone to mutation. After all, it was successful mutations that got us walking upright and carrying around these big brains. The less successful mutations, unfortunately, mostly try to kill us.

It wouldn't surprise me a bit to find that the list of things that can cause mutations includes exposure to high voltage electrical fields, though I haven't run across any data on that specifically.

Most of what you read about factors linked to MDS cite only a few things: benzene, alcohol (though I have yet to find an actual study on that one), and previous cancer treatment with radiation or chemotherapy.

That's probably not a very satisfying answer, but I hope it's of some use. Here's hoping your counts remain manageable.

Take care!

Greg

[Neil Cuadra]

Originally Posted by otryingo

Hi - My father was diagnosed with myelodysplasia about a year ago. He has been healthy as a horse his whole life and dances 3-4 times per week. He has never used medications (not even aspirin) and would rarely see a doctor. He decided to get a routine checkup about 3 years ago and they put him on Lipitor. I've been suspicious for a while that the Lipitor could have caused the problem with the myelodysplasia and just did a google search to see if there have been any studies connecting the two. I did come across some that seem to be finding a connection. Does anyone have any experience with this?

I think ehealthme.com is reporting, in a rather mechanical way, the number of people who fall into both categories (take Liptor and have MDS) rather than showing that there's a connection between the two. And there's not much of an overlap in their data, since they show less than one tenth of one percent of Lipitor users also have MDS.

I've never heard of MDS being a side effect of Lipitor, although low platelets and low red cell counts have been reported as rare Lipitor side effects. The cause of MDS is usually unknown. Known causes include exposure to toxic chemicals (particularly benzene), smoking, or prior treatment with high-dose radiation or chemotherapy. If your father doesn't smoke then you can rule out the last two possible causes but it's hard to know what chemicals you've been exposed to over a lifetime.

I'm glad your father is a healthy guy. That can make a big difference if you require treatment for MDS.

Has your father needed MDS treatment yet? Do you know what his MDS "subtype" is or how they rate the MDS severity (risk level)?

[otryingo]

Hi Niel,

Thanks for the prompt reply. He has been taking procrit shots weekly since January 2012. His red and white cells have been steadily declining and he'll likely need to start blood transfusions in a couple of weeks. He'll have another bone marrow test tomorrow to confirm this. I wasn't quite clear in my earlier post. He was vibrant just a year ago and in the past few months he's been rapidly declining and marching toward acute Leukemia.

As far as the statin drug connection idea, and since the cause of myelodysplasia is fairly unknown, I was just trying to come up with ideas for future research. I figure everything is on the table. I know that nothing will be in time to help my Dad, but thought maybe someone out there might be able to do a study to see if certain drugs or combinations of drugs can trigger this type of problem.

I'm not anti-drug, but increasingly I try to look at the source of medical issues rather than trying to put a bandaid on them. (For instance, I had some skin issues a while back and discovered that the source of the problem was food allergies. I figured this out for myself after about 17 years of suffering. The dermatologists just gave me creams, etc., that were the "bandaid" and never cured the problem. I've now been issue free for about 6 years after discovering which foods I'm allergic to, with the help of a professional allergist.)

So I was trying to approach my Dad's situation in a similar way without being a scientist or doctor. It just seems that he was perfectly fine until he starting taking medications for the cholesterol. All you need to hear is an RX commercial with the disclaimer message to wonder if some of these drugs are worth it - or even if they really know everything about them and their side-effects.

Thanks, again.

[otryingo]

Hi Neil - I just answer your post to me, but I don't think it is still linked. Sorry - tonight's the first time I've ever "posted" anything and I messed it up. I believe it's now post #12 under "MDS possible cause?" Thanks

Originally Posted by Neil Cuadra

I think ehealthme.com is reporting, in a rather mechanical way, the number of people who fall into both categories (take Liptor and have MDS) rather than showing that there's a connection between the two. And there's not much of an overlap in their data, since they show less than one tenth of one percent of Lipitor users also have MDS.

I've never heard of MDS being a side effect of Lipitor, although low platelets and low red cell counts have been reported as rare Lipitor side effects. The cause of MDS is usually unknown. Known causes include exposure to toxic chemicals (particularly benzene), smoking, or prior treatment with high-dose radiation or chemotherapy. If your father doesn't smoke then you can rule out the last two possible causes but it's hard to know what chemicals you've been exposed to over a lifetime.

I'm glad your father is a healthy guy. That can make a big difference if you require treatment for MDS.

Has your father needed MDS treatment yet? Do you know what his MDS "subtype" is or how they rate the MDS severity (risk level)?

[Mac]

My husband has worked construction most of his life. He has also worked on and painted cars for years. He believes he got his MDS from painting cars, the paint, the cleaners etc. He had two friends that also painted cars for a living and they both developed MDS.

[Chirley]

My brother is a school teacher but has worked with cars for years as a hobby. He has had to stop because he has Lupus and every time he painted a car or mixed thinners etc, his Lupus flared and his platelets would drop enough to require hospitalisation.

It took him a while to realise the association.

Regards

Chirlet

[Heather8773]

Mmmmm ... Very interesting. My husband painted cars and worked as a mechanic from 16-20 at 20 he has worked for ten years in commercial ac and refrigeration ...smokes also.. So as you can see half of his life exposed to chemicals and now has developed PNH....
It's hard to win the battle against chemicals ... Whether in food (like HFCs ..cheaper +storage life= big $ = greed won over health) or other exposure. It is truly unbelievable what $ has approved to be "safe "
Chickens pumped w hormones and antibiotic s to turn a profit... Yikes!!!
we can share experiences and hope that leads to answers and a change
I hope to read blessed news for u all!

Thank God HE's here to help us through these dx's.

[Mac]

My husband said even way back there were all kinds of warnings on the car paint and cleaners. He said the worse thing he probably did was to clean his hands with things that contained benzene (sp). A friend of our son who is in his late 20's runs a garage and never used much precaution when using these products. My husband warned him about the effects of these and he is now very careful and uses all the precautions. He told Tim he may not have gotten MDS from them , but to be on the safe side he should be very careful and Tim took his advice. My husband also worked construction from the 60's on and knows he was exposed to many things that are now banned God bless all of you and take care.

[gramous]

my friend is chemist and worked every week with benzen and other derivaties of aromatics in the seventies and eighties without protection...

[Sally C]

My husband Don used "Round-up" weed killer in the yard for years. Although he covered everything but his hands and his nose, I have always felt that may have had something to do with his getting MDS - possibly through inhaling it. He was in the insurance business for over 30 years so I don't think that was the cause.
He strongly disagrees with this thought. However, about a year ago there was an article about Round-up that specifically stated 2 diseases that could be caused by exposure to Round-up, which contains Benzene - and one of the two diseases listed was MDS. I read it after his diagnosis in 2008 and after I had wondered if it had something to do with his disease.
Take care and God Bless,
Sally

[Lulu]

I've been suspicious for a while that the Lipitor could have caused the problem with the myelodysplasia

One theory is that vitamin K and D deficiency could cause MDS in a subset of people (there is another thread about this). If this is true it is entirely feasible that Lipitor may be a factor. Drugs that reduce cholesterol or block the absorption of fat are also likely to reduce the absorption of fat soluble vitamins (A, D, K, E). Statins are also known to reduce CoQ10, and some doctors advise supplementing this.

I do not take statins but have gut problems which are known to cause deficiencies in these vitamins in particular, and I am sure this is a factor in my illness.

Am not advising stopping taking the medication, btw.

[MDSPerth]

Originally Posted by Lulu

One theory is that vitamin K and D deficiency could cause MDS in a subset of people (there is another thread about this). If this is true it is entirely feasible that Lipitor may be a factor. Drugs that reduce cholesterol or block the absorption of fat are also likely to reduce the absorption of fat soluble vitamins (A, D, K, E). Statins are also known to reduce CoQ10, and some doctors advise supplementing this.

I do not take statins but have gut problems which are known to cause deficiencies in these vitamins in particular, and I am sure this is a factor in my illness.

Am not advising stopping taking the medication, btw.

I read this theory with interest (the vitamin D deficiency part). Paul had routine blood tests two years prior to MDS diagnosis. Blood tests at that point were all within normal range, however his doctor put him on a Vitamin D tablets because these blood tests showed he was Vitamin D deficient. Interesting!

[Chirley]

I too have been prescribed Vit D tablets because blood tests show I was very deficient.

Regards

Chirley

[sandem01]

My dad was an aircraft mechanic with the air force back in the 50's and 60's and during the 70's he had a side job/hobby painting cars and motorcycles in the basement. I don't necessarily feel like this caused his mds...I think it could be that it just developed as he got older.

[K Dance]

Concerned!
I am a 5 year breast cancer survivor and see my oncologist every 6 months. My blood counts for the past year have been dropping and have been anemic for about 2 years. My RBC, Hgb, Hematocrit, and just recently WBC have been just below normal and my RDW is high. The dr is just monitoring me for now so just trying to do my research. Thanks for any input.

[dougr]

Thanks for an informative thread as this is just starting for me in addition to my dx for CLL Intermediate Stage was 2011. The WBC dropped to 2.8