I want to apologize for the other day

[RhondaH]

I am SOOOO sorry for my ranting the other day (I had just found out about the "cancer cluster" at my other house, my friend that has brain cancer due to it and that the probable source of the problem was a person/company my mother had worked for and was already greatly disliked and my mouth (fingers) spouted off in all directions. Many of you have FAR more going on than I and I have NO right to complain about my petty issues...I think the world of you all and your in my prayers daily. I'm an "information" person and often post "information" that I find interesting, but because of my lack of knowledge, don't often comment on it as I find that many of you can glean more out of it than I (though I have learnt much since first being diagnosed and have taken to Lani's advise and have done more specific research on the specific HER2 bc cell lines). I love you ALL. Take care and God bless. Again...I'm sorry.

Rhonda

[aquinis2000]

Rhonda, gosh after reading your "ranting" post I thought you were never so real. A woman of passion and concern for others. I think you need to vent your feeling to people. I saw how much you considered the people on this board your friends, to be the good ,the bad, and the ugly is part of every persons makeup. I too have said things that i regret, thats whats so bad about that dreaded "send" button. But we all are individuals, with different burdens to carry. I found nothing offensive about your post at all. No need to apologize about something on your heart. God bless you.

This board serves many different purposes for many different people. I, too, like to post information--because, for me, information is freedom.

Most people with cancer sense a lack of power to alter how things are going--some grab onto promises from charlatans, others to micromanaging their nutrition, others keep incredibly cataloged libraries of their test results, others hide their head in the sand and hope it will go away. Each reaction is entirely valid and is merely a way people can adapt to the situation . Some utilize one's powers more constructively than others, but all are valid for that individual. Thinking about what caused one's cancer, even blaming others, is normal and can be very constructive if it causes one to seek information, raise consciousness and perhaps effect of change of one or many persons behavior.

others don't

I have sensed from your posts, that you are someone who is TRULY trying to help others by posting whatever you find that you think might help. And, indeed, your posts have helped others in many ways. There are those who
"lurk" hoping to prepare themselves should they recur, those who have recur and have run out of options and others who just hope to understand more about what is being learned about what afflicts them. Even when the terms are technical and they only read the title and last lines (and now look to see if it was indeed done in a her2+ cell line) they have added to their arsenal of weapons and can print it out and have something to ask their oncologist. I have also sensed that you are truly happy to post things you have just found and feel are really "juicy" and pertinent!

Many breast cancer oncologists have told me they regrettably don't have the time to research the publications about breast cancer as extensively as we do--they have busy practices , research grants to write, clinical trials to participate in. They also, even in the university, cannot access many articles without paying the $20 for 24 hours extortion charge placed by conglomerate "publishers" on the results of taxpayer-paid research. But don't get me started on that.

One oncologist who is writing a chapter in a book, asked me what resources I went to on the web to find the articles I brought to her attention
as she found them especially interesting.

RHONDA PLEASE KEEP POSTING YOUR INFORMATION as it helps this transfer of knowledge move forward, and with that perhaps the "turning on of the little lightbulb in the head" of someone who may really make some
breakthroughs in this very complicated nasty parasitic-like disease, and empowers patients even if the words are technical. If more people searched the incredible volume of things published on the web (including the nutritional, the alternative, the psychological, etc) and actively posted then to this site I think we can speed up the rate of moving research from bench to clinic (by getting those at the bench in touch with what others at the bench have done) and by getting those in the clinic knowledgeable about what others in the clinic have found (even if it is drugs which have to be used "off-label")

For those who are not technical-word phobic, please post information on laws regarding insurance issues, advocacy training, etc. Whatever you feel comfortable with. BUT POST INFORMATION.

There is, of course, the other function of the site, which it fulfills so well. ie, giving people a place to commiserate, learn from others personal experience, learn how to ask the right questions, change oncologists, get on a vaccine trial, and of course VENT.

Now its time for me to stop being so verbose myself!

So Rhonda, KEEP IT UP!

[AlaskaAngel]

Rhonda,

I appreciate your thoughtful posts. I can only sympathize with your current concerns, as we have struggled here with dioxin and other toxins contaminating our town from the pulp mill (now closed down). How bad does it have to get?

AlaskaAngel

[StephN]

Don't sweat the small stuff, Rhonda. I know it is BIG when the likes of you take to the soapbox, but that is really OK.

One big question that has been in my mind since diagnosis is whether all the chemicals I was exposed to as a younger person have contributed to my cancer. I was exposed to at least 2 or 3 major radiation leaks from the Hanford Atomic Works during the 50's and up to early 1960's. ALso the mosquito spray for the swampy area in the canyon at the end of our short street. Not to mention all the poisons that went into the orchards and fields of eastern Washington where the fresh food I ate came from. Mom's tomatoes and the fruit from our trees and the neighbors were not treated, but most of it was commercially in those days.

We never ate much pre-prepared food as it was pretty awful in earlier days. The rest of my family continue to be healthy and cancer-free, including my parents. But as some doctors will tell us, there are some whose bodies are less able to deal with toxins, germs, viruses, pollens, etc. than others. Seems I was always getting every passing disease as a child.

There must have been some research on the mutations caused by various substances - at least in mouse models.
Then there is the STRESS of modern daily life and the demands on us such that we rarely get time to truly relax and give our bodies a break.

This is a complex problem and we have the RIGHT to get FRUSTRATED with the way our environment is abused. I have raspberry and blueberry bushes on the border of our property and the neighbor sprays against weeds every year. I asked him to stop doing that and he did last year after my brain mets!!! Guess I got his attention finally. . . .

I find this thread so interesting.I was exposed to many chemicals as was alot of people in our generation. First off we went fishin for smelt in Lake Erie every year. I ate lots of great Lake fish. We had terrible dentists that didn't use anethestic and used very large mercury fillings. Our trees were sprayed for Dutch Elm Disease before they were all cut down. Our parents used pesticides liberally on our lawns and our basements. We were exposed to second-hand smoke in rolled-up car windows and in our homes. ................Some of us had asthma but nobody made (or admitted to) the connection. Our water was super chlorinated and flouronated in some municipalities. And the list goes on. When is somebody going to admit that this affected many of us?
Some think we are nut-cases for being so sensitive. mt dear mother-in-law
is 77, lives on pretzels and ice cream, pepsi, coffee and about a quarter of a glass of water a day. She claims it doesn't make a difference and maybe it doesn't...not for her.

Keep posting that information.

We all need within our own constraints to know more about cancer.

The more I realise and see how very very complex cancer is, and with very many health issues the more it is evident that determining the triggers, and so helping prevention in the longer term will be much more important than the cure.

If nothing else given that it is evident that this disease is almost personal in nature to each patient, and the enormous potential costs of treaments on the basis of the costs of recent drugs, how is everybody going to be able to afford treatment, or govenments pay for it.

Some governments are begining to look at the cost balances of prevention.

We in our own tiny way came just maybe help try and inform that process.

RB

[julierene]

The Dioxin thing REALLY bothered me treamendously! From the standpoint that they made us think that things were "microwavable". It's sickening!

I found out about the plastics about 2-3 months before I learned about my cancer gene, and unfortunatly my 3 children having the gene. At the time though, I was furious! I felt like this might be the REAL reason I got cancer! I had decided that I had done everything right for diet, but that still wasn't enough...it had to be something else. I wish that were only true... Because then, my 3 children wouldn't be facing the same odds I was.

I love information. But at times, I feel that it doesn't always answer the real question. What causes cancer? For some of us, probably most of us under 50 - it's genes. (I personally feel the number is much higher that 10% because those past 50 don't make up 90% of breast cancer diagnoses.) For others, getting older and immune systems not working as well. No matter what I read, I always try and focus on what I can do to help my immune system and cells work more effenciently in a world plagued with bad chemicals and toxins.
Lots of love for you all, Julie

Julierene,

I feel sure you have already considered it, but if not PLEASE do some reading on balancing the omega threes and sixes.

I am in my own amateur way convinced that in time this will be acknowledged as a magor percussor or cancer for the reasons given on various posts on this site. (Of course there are likely to be lots of other factors including genetics, but given the evolutionary (intelligent design or random) role of threes and sixes and recognised ability to alter gene expression across a wide range of genes there are good reasons as to why it could be a magor trigger, and sensitise the body to other environmental factors).

If nothing else it is often reported as having significant health benifits.

RB

[julierene]

I appreciate all of the antioxidants and dietary supplemental information, and I have researched till my eyesballs were about shot on the subject.

Unfortunately, our genetic mutation on the p53 gene was inherited. The odds are 80% before the age of 50 for a soft tissue cancer. If you want to read up on it, it's called Li-Fraumeni syndrome. I was dx at age 28 with BC.

I took an omega supplement after my first diagnosis on a daily basis, and from all the odds, I was practically Stage 1 and shouldn't have had a recurrence. But I coudln't escape my genes. Even a very aggressive treatment didn't work. I am now Stage 4 only 2 years after my initial diagnosis. I feel very confident that the antioxidants, vitamins, and supplements I took did not benefit me. I took a ton of very approved supplements that many of the women on this board rave about. So my opinion on this topic is very different than many of the women here. I felt like throwing them all down the toilet - with a great big SPLASH!!! But in the end, I still take them knowing they didn't do any good for preventing my recurrence.

[MCS]

Hell no

Keep posting. information is needed and venting as well

go

MCS ( Maria)

Julierene.

I appreciate and understand your cynicsm, but PLEASE PLEASE PLEASE read this as a starting point, and you may begin to appreciate why I keep parroting on about the importance of balancing the threes and sixes.

Taking an omega three supplement is not sufficient if you are at all convinced, several sources would suggest on top of balancing the threes and sixes getting 2-3 mg a day of DHA/EPA as a starting point from diet or supplements.


http://www.ajcn.org/cgi/content/full/70/3/560S

RB

Julierene

I quickly looked up your condition as suggested, and skimmed quickly through it. I don't know what to say that is meaningful or useful, except I admire the way you are dealing with things.

I did search on NCBI for omega three and P53 and came up with this which may be of interest - I know they are probably different lines but it does suggest omega three MIGHT play a part.

I simply do not know enough to make intelligent comment but can tell you a murine trial showed high omega six v omega three uprated expression of Ednrb and CDl 40 by a factor of 10 and a host of others by 2 to five. (and Her2 by a factor of 2) in case one of your advisors can make more sense of that that I am currently able to do.

RB


1: Gynecol Oncol. 2005 Oct;99(1):58-64. Related Articles, Links
Click here to read
The effects of Omega-3 fatty acids on growth regulation of epithelial ovarian cancer cell lines.

Sharma A, Belna J, Logan J, Espat J, Hurteau JA.

Department of Obstetrics/Gynecology, Division of Gynecologic Oncology, The University of Illinois Medical Center at Chicago, 820 South Wood Street (MC 808), Chicago, IL 60612-7313, USA.

OBJECTIVE: Omega-3 fatty acids (OM-3FAs) have been shown to possess anti-carcinogenic properties. We investigated the effect of OM-3FAs on epithelial ovarian cancer cell lines to determine if a growth suppressive effect existed and to gain a better insight on the potential molecular mechanisms that may be involved. METHODS: Three epithelial ovarian cancer cell lines (SKOV-3 [p53 null], TOV-21G [wt p53] and OVCAR-3 [mutant p53]) and one immortalized ovarian surface epithelial cell line (IOSE-29 [wt p53]) were treated with OM-3FAs and evaluated for cellular proliferation (WST-1 assay), apoptosis (Annexin V-FITC/PI method) and VEGF expression (VEGF ELISA assay). RESULTS: A statistically significant inhibitory effect under the influence of OM-3FAs was detected in all four cell lines. Apoptosis and VEGF down-regulation were either limited or not detected in the p53 null and mutant cell lines, SKOV-3 and OVCAR-3 respectively. Apoptosis and/or VEGF down-regulation was strongly evident in the wt p53 cell lines TOV-21G and IOSE-29. CONCLUSION: These data suggest that, under the influence of OM-3FAs, there are definitive growth suppressive mechanisms at work and that the biologic effects of OM-3FAs may in part be mediated by the p53 status.

PMID: 16043214 [PubMed - indexed for MEDLINE]