But it appears that the mutation provides only the preposition for the tumor, not the cause though?

Yes, it does look like so since not all the cells with the mutation develop into a lipoma (if all the cells have the mutation). And it is also possible for a lipoma to appear without any mutation, even in FML.

Can you see why there is strong bias to FML?

I do see your point but until it is scientifically proven I remain uncertain. We would need to know if your every cell have the multitude of mutations discovered from any of your lipomas?

It's also more probable for people in the family to get warts (HPV) from the family members than it is for those whose family members lack of warts.

Fair enough, thanks Matt!

(the lumpy, warty family...nice picture eh)

Sparky.

Sparky: The problem is too many fat cells from too much cell division, not that the tumor lacks metabolic processes. (By the way, I am using the term "metabolic" here in the scientific sense, perhaps a little different from the common popular usage.)

Separately, any "germ line" or "constitutional" mutation (not just lipoma translocations) is passed down in the human sperm and egg cells and is present in every cell of the body. It is very easy to distinguish germ line mutations from "somatic" or "acquired" mutations, so there is not much controversy which mutations are which.

Every cell of the body holds the full complement of a person's DNA code. For example, a cell in the lungs doesn't act like a liver cell only because the liver portion of the code that resides in the lung cell is inactive. As I have mentioned earlier, you could walk into a local genetics lab and ask them to look for 12Q translocations, and they would ask you for some blood or a cheek swab, not a biopsy of your lipoma tumor. They would tell you: "if you have a 12Q translocation, it will be present in your cheek swab or blood, or any other cell, so there is no need for us to biopsy your tumor."

But the flip side is that if you happen to get exposed to a high dose of radiation and get a translocation mutation between 9 and 22 (not 12q) that gives you leukemia, it won't be present in your sperm. So you children will not inherit your "acquired" mutation. Your 9th and 22nd chromosomes will be normal in your cheek swab cells.

But back to your primary question--it would be hard for you to come up with an option for a lipoma cure that has not already been considered by people that spend their lives studying this issue. But by learning some more you can at least be less vulnerable to scam artists, such as some that even post to this board. So there is a great value in your curiosity, but the value is not that you stand a good chance of winning the nobel prize in medicine for being the person who discovered a cure to tumor diseases.

Have a good, wart free day.

Thanks. Indeed, selfishly (I wouldnt be bothing if I didn't have lipoma), it is my intention to try and decypher possible good/bad/indifferent treatment/cure information. To do so though (to stand any chance realistically) I have felt it necassary to cast the net wider to understand some basic medical terms, facts and principals surrounding normal adipose construction and, given the pathology similarities, that of lipoma. In this regard, I started another topic recently:

'what exactly is a lipoma?'

I am interested in what you say with regards to cell division. Let's see if I can get this right. I have the 12q mutation and have a proposition to lipoma as we have discussed. For the vast majority of my body, I have normally described and functioning adipose (allbeit with the mutation). However, I have approx 50 instances of uncontrollable cell division and growth within my adipose with a result of lipoma tumour. Now, if I take it that I have lost the normal control of my bodies cell activity at these points (inc. division and growth), then something different or event on must have occurred here, trigger, to make this happen (ie. preposition + trigger = lipoma). We dont know what event has happened, BUT the resultant pathology differences might provide some clues as to WHY and perhaps also to afford an event off. For instance, there are a number of reports that show irregular enzyme activities within lipoma - Lipoprotein Lipase (LPL) and Hormone Sensitive Lipase (HSL). One report states "It is likely that the high lipoprotein lipase activity of lipoma contributes to the growth of the tumour". This begs the question, are these resultant or attributed or even indeed linked to event on, and could they be controlled to create a treatment. What else is out there that might contibute similarly?

Sparky.

Sparky:

Hi.

1. First, your equation predisposition + trigger = lipoma is sort of correct but most people think of triggers as some external variable. This may seem like semantics, but "trigger" would be correct only if we understand that a trigger is something in the body rather than an external event like "patient started lifting weights" or "patient eat too much processed foods". Maybe the term "secondary affected nucleic process" could avoid that confusion which I have seen on this board. The point is that this "trigger is some invisible process, not anything you can control or see. Or that pathology of the tissue can detect.

2. No, pathology won't distinguish why some cells lose control of cellular division while other cells with the same translocation do not have this problem. Your logic is correct that if we could identify the difference then that could lead to a treatment. But you are greatly underestimating the difficulty in identifying the difference. You must remember that billions are spent every year on tumor research and something this simple would have been identified several decades ago. All of the multitude of protein coding and signaling processes are not mapped out and understood. Therefore, no one is close to knowing which processes interact with the translocation to cause the uncontrolled cellular division.

The article you cited on metabolic differences in "lipoma" tissue does not relate to common FML. That is really a completely different disease. "Lipoma" is like "headache"--a broad term that can be caused by many different things. Reading an article about a headache caused by a concussion doesn't shed light on how to treat a headache caused by a flu.

Guest,

1. How would you know that "lifting weights" or "eating processed foods" wouldn't have any effect internally if you or any pathologist can't even specify the invisible process behind the abnormal cellular division? I think it's well described that eating processed foods can have an effect to one's hormone levels as well as lifting weights and eating protein shakes.

Now I'm not saying that these two external factors are actually contributing to lipoma triggering but I'm pretty sure you Guest can't say they don't. That would just be naive.

Sparky,

there's no such study available (at least yet) which would unambiguously state that the translocation in the chromosome 12 sometimes confronted in lipomas could actually be found in your every cell. The samples are always from the tumors so it's all just assumptions.

Yes, Guest keeps on asking us to send some samples to our local genetic lab but there are none in my country (that I know of) and even if there was I would think it's still quite pricy eventhough Guest says it is not.

I must say that I do not know much about this subject but if it is available and reasonably priced I would definitely like to know more. I mean if the scientist aren't willing to publish a study where they would show that the mutations discovered in the FML patient's lipomas exist in his cheek swap as well then I guess we just have to do it by ourselves.

Oh, and I wonder what's Guest's take on this: Have cancer cytogeneticists been wrong in assigning chromosome 12 breakpoints in benign tumors?. Probably just another hoccus poccus study which is not relevant and has nothing to do with FML, right?

Tom,

1. Assuming a mutated chromosome case, I understand your thoughts with regards the secondary 'event' (I purposely tried to choose a word that wouldn't read too specific or descriptive).

2. With that in mind, and taking simplistically, mutation + trigger/event on = lipoma. Then as I see it, we either channel effort into fixing the mutation (impossibility / tall order?) and/or we somehow eliminate, mask, mute.... the trigger/event on (this could be singular or many). As you say, I'm sure you are correct in explaining the difficulty for us to understand precisely, down to the detailed level you describe, in making possible advances to a treatment. I'm also equally sure that you are correct in saying pathological analysis of lipoma is unlikely to find any answers down to this level. But, with the absence of this knowledge, what I'm proposing though, is that it is by understanding better the pathology and by identifying connected differences within standard adipose, that this would not only contribute specifically to the detailed research, but would also provide for a better informed path for the likes of us 'lumpys' to take at this time. It may well prove to be all 'in vain' but hey, you never know!

When's a lipoma a lipoma? (no, not the start of a joke!). I understand there is often confusion between, lipoma and cysts, boils or other malignent tumour types, but I think I'm right in saying 'Lipoma represents by far the most common mesenchymal neoplasm'. So, unlike your headache example, I do think that becuase lipoma are underpinned with some basic similarity (especially those that are common sucutaneous), that you can afford to view these similarly for possible treatements against those findings in the study article I pointed out. Actually, there are numerous similar 'lipoma' study’s that highlight these specific irregular enzyme activities. I'm not shouting 'euika', just that as a trend I want to know more.

Do you have any knowledge or views on the study findings and these particular enzymes? (you indicated you might a few posts back).

Matt,

In the UK, there are 28 NHS regional DNA/genetic testing centres, I called up the UKGenetic Testing network that work with the NHS, and it seems I could get tested this way (I'd need to do this through my GP, but there's a chance I might not be worthy of them spending money on). There are also other private companies offering paid for services (mainly for paternity it seems though).

I'm not sure I have much more to 'tease' out from where we started with this discussion, but a big THANKS for your comments and thoughts!

Sparky.

Sparky, what would be the price for finding out if you had the translocation in the chromosome 12 in your cheek swap? Could you find it out for us? And could you also ask if they actually do this kind of investigation? Thanks.

I have requested testing from three different commercial labs. Specifically testing availability against chromosomal abnormalities in HGMA2 / 12. I havent yet had any replies, but generally speaking, there does seem to be lot's of testing availability here in the UK (some v.expensive, I can see what's heading my way). I'll post back when I have any news.

Sparky.

Despite regular contact with these labs, only one suggested possible testing as I asked. However, I had an email from them yesterday, saying "I have now heard back from the laboratory and Unfortunatley this is not a test we can offer". Only interested in quick £ churn paternity testing it seems.

I'll try the NHS route as I mentioned below.

Sparky.

Sparky wrote:Despite regular contact with these labs, only one suggested possible testing as I asked. However, I had an email from them yesterday, saying "I have now heard back from the laboratory and Unfortunatley this is not a test we can offer". Only interested in quick £ churn paternity testing it seems.

I'll try the NHS route as I mentioned below.

Sparky.

Sparky: In the U.S. these labs are very accommodating, and the prices have fallen dramatically as shown on some of their websites price lists.


Here is an example of a lab that has a whole page dedicated to translocation mutations:

http://www.reproductivegenetics.com/translocations.html

Below is an example of another lab that has 129 standard tests that they will run, but they also mention that they would be happy to look for whatever mutations you might specify to them:

http://www.ggc.org/

The also include their price lists.

Some people instead choose the "mail-in" diagnostics, in which you swab your cheek yourself and mail the sample to the lab. Maybe you can find one of those in the U.S. and just mail them your cheek swab.

Sparky, can you describe us what exactly did you ask from the labs?

Guest, thanks for the links. I will study them.

Here's the direct link to the prices: http://www.ggc.org/images/TestPDFs/test_costs.pdf (they seem to vary between $36 to $5000)

I asked for testing availability against chromosomal abnormalities in HMGA2 and chromosome 12. I obviously mentioned 'lipoma' to those I asked, they seemed to understand my request. I too have found numerous labs offering limited and some quite extensive but specific tests, they dont seem to want to know about anything outside of these.

However, I'm also wondering if there is more to it. As we know, there are many different instances or types of 'lipoma' (I dont understand this but just accept there is), perhaps this is why the labs dont offer specific testing? As an example, one of the labs that I contacted (a specific gene test offered through the NHS) told me to look through their list of tests. I did and I found a test that contained the words 'multiple lipoma' but the test was for something called "BANNAYAN SYNDROME". Looking up this there is a possibility I might have it, but perhaps also.... superficial lipomatosis, angiolipoma, FML, Cowden syndrome, this Bannayan syndrome or others.... So, unlike other more specific genetic problems, can generic 'lipoma' testing be done, would I need lots of tests, and what would I ask for?

Given the symptoms I have and the genetic linkage, as far as I understand it, I have some form of standard subcutaneous multiple lipoma, probably FML. Confirmation through testing, if I could get it, would be nice and I'm sure tell me more precisely, but what else? In the absence of any specific or differential treatment or cure, what can it guide me to? So I think I'll concentrate my efforts on general research from this point.

Thanks, Sparky.

Sparky: I don't think a genetic test would have a huge amount of practical value for you, but since you are so curious the results might satisfy your curiosity.

I would NOT ask them to diagnose lipoma. That is not their job and might scare them away. Instead, say that you are looking for any variation in chromosomal region 12q13-15. They should also be sure to check HMGIC (in that region) for any variation. HMGIC/LPP would be one example. It might be a translocation such as t(3;12)(q27-28;q14-15), but not necessarily--they are looking for any abnormality in 12q13-15.

That is more than enough information for them, sufficiently specific, and they will understand it. And it is not a huge job for them. You won't see common FML lipoma on their list--most of their business is in mutations associated with deadly diseases. But they also say that they are open to other requests. Also, some even specifically say that they can find translocation mutations.

Based on your description of your symptoms, it is likely that if they follow the instructions above they will find something and be able to let you know. That is because the instructions above fit common lipomatosis.

High Fructose Corn Syrup - in Soda, Candy, Syrup, Processed Foods, even in many Sausages. I make NO claim to fact, however just a hunch I had. Then I checked GOOGLE and the hits are amazing. Try the Paleo Diet. The Paleo Diet is anything available to the Caveman, meaning no ice cream. Try Steak, not Burgers.... Try Chicken Breast, not Chicken Nuggets... Enjoy Wine, Water & Tea, not Soda.

Sparky wrote: For instance, there are a number of reports that show irregular enzyme activities within lipoma - Lipoprotein Lipase (LPL) and Hormone Sensitive Lipase (HSL). One report states "It is likely that the high lipoprotein lipase activity of lipoma contributes to the growth of the tumour". This begs the question, are these resultant or attributed or even indeed linked to event on, and could they be controlled to create a treatment. What else is out there that might contibute similarly?

Sparky.

Could this explain why my lipomas started increasing in size and number at a much faster rate after menopause?

Which I just went through a year ago.

My lipomas were not that bad, basically dormant until I went through the "change of life".
Then they seemed to be going crazy. Its awful. getting worse seems like I find a new one or one is larger every week.

I just came across this forum today, 8/5/2012. Wikipedia directed me to it. I have been looking for an extensive, informative, supportive site such as this as I too suffer from Lipomatosis. I couldn't be more thriled.

Thank you to Matt for creating it and I look forward to reading/sharing stories with all of you.

David

Hi David,

welcome and thanks!

In looking through this thread here are some of my thoughts. What causes DNA mutation in the first place? I'm taking all this unchangable DNA mutation theory with a grain of salt. Besides. If something can mutate a gene for the worse then there must also be something that can mutate a gene for the better.

Seems like nature is always trying to correct it's self but that at the same time things are changing. I could see a mistake being made in a gene. Perhaps it's society's equivalent of making a mistake in creating a bad law that leads to it's breakdown. Maybe it's not a coincidence that both DNA and laws have evolved into code. Codes are supposed to go along with laws but lots of times they don't. Seems like that's where most of the problems come from. Especially in times of hardship and confusion. This could equate to bad nutrition or stress and injury in one's body. Don't you think?

It also seems like the whole DNA and gene theory is not very well understood. I used to think they knew about cosmology also till I really got into it and learned that scientists just made up dark matter which is completely not understood and makes up 90% of the universe. Translation equals that they themselves admit they only understand 10 percent. How much of that 10 percent do you really think they understand? Do you really think that DNA is understood any better?

Hmm. Have you ever heard of the electric universe theory? If there is any truth in it perhaps the importance of electrical conductivity in the body has also been completely ignored as well. It could explain the importance of electrolytes in the body. Especially good ones VS bad ones.

surfsteve wrote:In looking through this thread here are some of my thoughts. What causes DNA mutation in the first place? I'm taking all this unchangable DNA mutation theory with a grain of salt. Besides. If something can mutate a gene for the worse then there must also be something that can mutate a gene for the better.

Seems like nature is always trying to correct it's self but that at the same time things are changing. I could see a mistake being made in a gene. Perhaps it's society's equivalent of making a mistake in creating a bad law that leads to it's breakdown. Maybe it's not a coincidence that both DNA and laws have evolved into code. Codes are supposed to go along with laws but lots of times they don't. Seems like that's where most of the problems come from. Especially in times of hardship and confusion. This could equate to bad nutrition or stress and injury in one's body. Don't you think?

It also seems like the whole DNA and gene theory is not very well understood. I used to think they knew about cosmology also till I really got into it and learned that scientists just made up dark matter which is completely not understood and makes up 90% of the universe. Translation equals that they themselves admit they only understand 10 percent. How much of that 10 percent do you really think they understand? Do you really think that DNA is understood any better?

Hmm. Have you ever heard of the electric universe theory? If there is any truth in it perhaps the importance of electrical conductivity in the body has also been completely ignored as well. It could explain the importance of electrolytes in the body. Especially good ones VS bad ones.

Surfsteve:

DNA is actually quite well understood. It is something that can be measured in a relatively low cost laboratory. Gene sequencing is relatively cheap now. The problem is: understanding a problem doesn't mean you can fix it. We cannot stop Hurricanes, but that doesn't mean that we don't know exactly what causes Hurricanes. The cause of Hurricanes has been known for decades.

To answer your question--the mutation is caused by a physical break during mitosis.