TRIPLE POSITIVE GROUP
Comments
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MsTori - Are you going to ice your nails during taxotere?0
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Wow so much going on.
SOL don't u get a bloodwork up evry week? Ciz yhat tells them about mag. and pot., where u'r levels are u have to find out first before u start taking these meds--u don't want ot to high either. So talk to u'r Onc. first.
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Tori,
You might want to check to ensure its not "oxide" you have...again, the citrate is better absorbed for heart, intestinal, etc.
After my 3rd tx (give or take, it's been awhile) I started using Mag. Citrate regular (every day) and never had another bowel issue with chemo. Not D or C.
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wasgij96 my hair came back gray and black. I had some gray before but my hair is dark brown, not black. It looked like my husband's hair, actually his aunt. They all have/had salt & pepper (black) hair. It also came back like fur.
A year later the texture was getting back to normal (no more fur). I do have more gray than before but I color it. It's actually a bit more challenging to cover the grey at my temples.
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Camillegal - love that John Wayne quote. Are you a lawyer? Wondering because of your screen name.
TonLee - thank you for the magnesium info.
CindyLooWhoo - what type/brand probiotic do you take? I'm wondering if the refrigerated ones are better than the non-refridg. I've been buying them in the cold section of the health food store. Kind of expensive, and my vitamin regimine is really starting to get pricey!
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Omaz- yes, I just got all my supplies for icing. I want to keep my nails. I'm using the neoprene wine bags for my hands and feet and will taking cooler with my reusable ice cubes in it. I'm going to try at get the chemo nurse to give me the taxotere first after premeds so I can get the icing over with a rest the remainder of the treatment I pray.
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TonLee- i believe it's mag citrate. I will double check. Its liquid form. That lovely stuff before you get a colonoscopy. Haha! They gave me a bottle after my bmx and reconstruction for constipation. The pills I have are mag oxide, haven't opened them yet, so may return them if they will take them.
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Tori,
The only place I've found Mag. Citrate is at Vitamin World. A big bottle is about $7. Good luck!
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VENT ON...you may want to skip this..its a vent....but ugh, I gotta just say.....
Is it just me, or does Pink-tober make anyone else throw up a little bit in their mouth?
I actually heard this on the radio today from a celebrity who had BC. She was being interviewed. "You know, 98% of women are cancer free at 5 years if their cancer is caught early." (Implying a cure.)
That's bulls*it! Maybe if they are PRE-cancerous. But 40,000 women, most of whom are dx "early" die a year from breast cancer...if there was a cure, they wouldn't.
I find this highly offensive. Since early detection isn't defined, people assume it means something it doesn't. Stage 1 sure sounds early! But it must not be since the survival rate at 8 years is 90%.
According to Cancer Treatment Centers of America:
The five-year survival rate for stage 0 breast cancer is 93%. (NOT 98) This means that almost all women diagnosed with stage 0 disease will live for at least five years after being diagnosed. In fact, women diagnosed with stage 0 breast cancer usually live long and healthy lives.
Stage 1: The eight-year survival rate for stage 1 breast cancer is about 90%, which means that most women will live for at least eight years after being diagnosed. Most women diagnosed with stage 1 breast cancer usually live long and healthy lives.
Stage 2: The eight-year survival rate for stage 2 breast cancer is approximately 70%, which means that most women will live for at least eight years after being diagnosed. Most women diagnosed with stage 2 breast cancer usually live long and healthy lives.
Stage 3: The eight-year survival rate for stage 3 breast cancer is approximately 40%, and the five-year survival rate ranges from 40% to almost 70%, which means that many women will live for several years after their diagnosis. In fact, many women live for much longer, and several effective stage 3 breast cancer treatment options are available.
http://www.cancercenter.com/breast-cancer/breast-cancer-staging/stage-3-breast-cancer.cfm
It's not like these stats are hard to find. And still we're bombarded with bogus statistics by people who mean well but know nothing.
And I can't tell you how many times people have minimized this disease because of this type misinformation. Heck, I minimized it before dx because it's curable!
Clueless.
Seems to me while women are told to get screened, they should be given the real stats on BC. It might provide the motivation to follow through.
And I'm not a big fan of all the "how to avoid getting BC" magazine articles this month either. They just piss me right off. Especially since 90% of the recommendations were part of my life BEFORE BC and it didn't stop it.
Grrrr.
Vent off!
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I am so glad to know that I am not alone with the whole sick of pinktober! I thought it was just me! I didn't care for the color pink prior to BC dx it was too girly but now I can't stand the site of it!
I think I heard that celeb talk and it baffles me how they can spout off such ridiculous stats.0 -
tonlee totally agree with you. I actually had a friend of mine's husband quote the exact same 98% statistic to me. " So you found it early, so its like 98% curable right???" ah no....totally wrong. I didn't even attempt to explain how my BC and other aggressive BC should not even be lumped into the same categors as other BC's
went for my pre-op today. BP is low but mine is always low, i explained this to the nurse. Hope it is ok. My iron levels are really low aswell. Anyone experience this? I just had a big spinach salad but i don't want to take iron pills b/c i already have major C and roids issues (TMI) i know. I am 11 days from surgery YIKES
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tonlee do you know what years those stats encompass?
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Roze,
They were posted this year on the site I cited. Is that what you mean?
My Onc gave me the same numbers, but tweaked a bit with Herceptin ..... and broke it down into 3A...
but 98%?
No.
When I mentioned this annoyance within the hearing of an aquaintance, she thought I was being "negative" because well, she heard the 98% stat on the radio, so women who say they are less than stage 4 and don't have that 98% stat must be EXAGGERATING DRAMA QUEENS.
That conversation did not go well.
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OK I know you guys hate Pinktober but think back when you didn't know all this shit. Remember Monday I spoke at a press conference (Illinois Comptroller big supporter of Strides Walk). Yesterday I was taped for a radio show that will air on the 14th locally basically saying the same thing in my "speech" but more of a conversation. Today I presented my speech again at KMPG corporate office along with a VP from ACS. The VP (also a nurse by training) gave a powerpoint explaining what breast cancer is and a bunch of stats.
You have to look at the stats in context of the good stats and understand exactly what they are including:
"Breast cancer is the second leading cause of cancer death in women, exceeded only by lung cancer. The chance that breast cancer will be responsible for a woman's death is about 1 in 36 (about 3%). Death rates from breast cancer have been declining since about 1990, with larger decreases in women younger than 50. These decreases are believed to be the result of earlier detection through screening and increased awareness, as well as improved treatment.
At this time there are more than 2.9 million breast cancer survivors in the United States. (This includes women still being treated and those who have completed treatment.)"
ACS sourceThis is from ACS
source linky But these are general numbers. They are lower because not everyone got treatment, got all the recommended treatment or quit some of the treatment (like hormone therapy) early. The numbers your onc gave you are specific to you and based on the treatment you got. Even stage 0 if ER/PR positive gets a recommendation of hormone treatment that many women refuse. As we know if you have DCIS or LCIS your chance of getting breast cancer again increases significantly.
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And yes people don't understand there is no cure. I know I never really understood that till I was diagnosed. Its up to us to educate others so they don't have to go through what we went through. Catching it early does give you a better chance. The longer you are cancer free the better your chance is that it won't come back
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So I don't believe this 98% an exaggeration if you get the treatment that is recommended.
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Lago,
I can't find anything to support the 98% stat. If you have it, please link it.
The numbers I posted in my vent are with ALL the recommended txs (surgery, chemo, rads, hormonals). Even with Herceptin, I'm looking at just over 50% 8 years out mostly because of the nodes. But I'm still considered 'early' stage. It's BS.
I was a broadcast news journalist and anchor for years. I reported on many things. It is my opinion that most people believe what they're told. So if they're told 98% of "early stagers" are "cured" that's what they believe. And some are even resistant to anyone who says different.
You can't be alive in this country with a tv and not know BC screening is recommended. I don't consider that news.
I'm speaking on the 20th to large group of minority women about BC. I plan to be short on personal anecdotes and long on real statistics. And I will attempt to explain this whole "early" stage conundrum.
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I just called the ACS 800 number (1-800-227-2345)
- These stats include all people with BC, treated and not treated
- These stats are from 2001-2002. So some of the targeted therapies were not available during all or some of the collection information.
- The guy I spoke with urges anyone with questions to call the 800 number. These are not volunteers. This is trained staff.
Again it's best to discuss these numbers with your onc so they are specific to you. Your own personal health history, age, weight, lifestyle etc. plays a part in this.
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I spoke to a women on Tuesday that hadn't had her mammogram in 6 years! She's in her 40's. She really didn't understand sound bit "catch it early." When I explained how fast my tumor grew in 4 years things started to click. When I told her that I might still have my breasts or even avoided chemo if it was caught before it went invasive she totally got it.So they can recommend all they want but most women don't understand that only about 5%-10% have a family history. Most think that it's a disease for old women (post menopausal). I didn't know only 5-10% had a family history before.
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OMG too much for me--But I don't like ll this type of hype when it's so superficial. Unless u've been personal with cancer u can not even scratch the surface of whst it does to u beside having cancer.
shore the only bar I could pass is the one with all the bottles--and I really don't like passing that up. It's just most of my name LOL
Oh we used to get our bllod drawn before chemo and got the results in 5 minutes-except for Pot. but they gave us the results so they knew what was happening right away. and that is how we pkayed liars poker blood test (I thought it would be interesting) so we'd do that evey week. U'd read the norma then u read u'r "score" and the silly thin was u'd win if u were the highest and yell like bingo and the results were still so low with most of us and we'd be laughing like crazy for being so stupid. we did this every week. So we always knew our blood work. and along the way u learned what it meant.
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In a discussion among oncs back sometime around 2006 when I was trying to get some understanding of the numbers, one number that the oncs participating in the discussion did not dispute was that the percentage of early stage bc patients who benefit from chemotherapy was just under 20%. If that is true, and again, none of the oncs disagreed with that number, then 80% get no benefit from adding it into their bag of tricks.
There are other therapies in addition that can help, including trastuzumab (for some percentage of the HER2 positives), radiation, and hormonal treatments.
I cannot provide any link or reference to the discussion mentioned because I did not note it at the time I saw it. So I hope anyone here would question and search on their own for something authoritative to support or refute it. Ask your own medical providers to provide the documentation either way.
People do tend to believe whatever they hope is true, whether or not it is. And fear of cancer is a good reason to believe the impossible.
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Lago and Tonlee, This is a very interesting conversation. I can see both points of view. I've read some interesting articles on this subject and it really is hard for women to decipher and know what to do, when even the experts don't agree. One report says we should get mammograms every year another report every two years. One says that mammograms are causing more harm, another says it saves lives. I found the following article very interesting and would like to know what you think:
http://www.cnn.com/2012/08/02/health/komen-mammograms/index.html
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Does anyone know if turmeric is estrogenic? I know its anti inflammatory and wanted to give it a try for lower back pain, but don't take much herbal stuff because I don't know what might mimic estrogen.
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Lago, Thanks. That report makes more sense, because it's based on a study about mammograms, and it's not based on statistics that are really unrelated to early detection. Statistics can be exaggerated and misused and they can change each year.
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I've done mammos since diagnosis and have skipped only one year since then myself. But radiation itself IS carcinogenic, and we do not know how many breast cancers are caused by the exposure to radiation from mammography, whether or not they are discovered by mammography as well.
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GrandmaV-i see a naturopath oncologist (oxy moron, huh) and he has me taking tumeric capsules twice a day.
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Lago,
Thanks for the link. I did speak with my Oncologist. lol He's the one that told me originally when I walked in all 98%-ed up (because HELLO! Do you know how many "professinals" told me that stat as a reporter?), that the statistic was bogus.
We sat down, reviewed the literature, looked at the cancer math, (though he had adjusted for Herceptin) and gave me my stats. In the end he said it doesn't matter once you have cancer....you either live or die. What's it matter if the stat says you only have 2% chance of it killing you. Dead is dead. And I agree.
What you're talking about, what you've said in your speech, speaks directly to my intent. Women are misinformed. Part of that misinformation is believing (like I did) that 98% of women are alive and well at 5 years. That's just not factual.
We all have different motivators. Hearing that BC didn't need to run in the family didn't motivate me to get a mammo. I skipped it when I turned 40 because it seemed useless. Why? Because I'd heard over and over again it's curable in almost every case but mets! So I figured I'd go every 5 years since all the media info said I had less than 2% risk of having it at my age, fitness level, blah blah blah.
Every 5 years exposing myself to radiation seemed reasonable, given the 98% statistic.
When I was diagnosed and given my REAL stats, I started telling the women in my family, who also felt the same way about mammos that I did. Some well into their 60's and no mammo EVER.
It was my REAL stats that got every single one of them in for their mammos. Every one.
As long as that 98% number is floating out there.....women aren't going to take it seriously. Because "odds" are...it won't happen to them if it's so easily "cured." And even if it does, meh...look at the "cure" rate!
Does that make sense?
I'm actually NOT disagreeing with you....
I do believe, often in our attempt to be "positive," we skim coat the reality. All that does is give women (like me before BC!) a false sense of security.
I'll take negative truth over positive skimming any day. But that's me.
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Yes I do understand. Like you when I heard "race for the cure" or "there is no cure" I thought they were talking about stage IV/mets. When others ask me questions like "did they get it all" or "are you all clear now" I tell them I am 2 years NED… and explain what NED actually means.
But, if you're stage 0 and treated that 98% probably still stands. The misunderstanding is that most of us are stage 0… That would be much better if it was but as we know not even close and even treated stage 0 can get mets (2%). Like you my risk of getting BC at my age with all my risk factors was under 2% just like you. When you become that 2% it's a real eye opener.
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I'm going to start out my presentation with "How many of you heard that 98% of women with breast cancer are cured, or cancer free at 5 years? Raise your hand!" lol
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I too am uneasy about the pinktober Breast cancer campaign.I was dxed in October so for me personally at least on my first anniversary it s making it more unomfortable.
That being said it is really the marketing bandwagon to which every business seems to be hitching themselves. Millions of well meaning people will buy products thinking they are helping the cause. It is up to us to do our research , find organziations that directly help BC ladies and will most effectively fund research and then tell as many people about them as possible.0 -
OK U guys (especially Lao) know I really don't have much of a clue about breast cancer. But how I see it, they can control BREAST CANCER, but not what happens because of it, There are a lot of women (and it always seems to me the celebrities) that get BC and maybe stage 1--and they do fine (for now) but when u have advanced or it oes pretty quickly to stae IV it's a different ball game and it's called with mets meaning alot of problems ahead maybe no immediately but u'r futre is up for grabs and this is what should be researched too. Of course if there was no BC mets would not happen it's almost a catch 22. I had just one breast taken and it was a mess--but the ins. co would not let thhem take both at the rime because I had 1 good one. Did they really think it would stay that way. Oer 1 year later the other one had to go with bad nodes and another mess. I was just finishin up my first chemo, then I had more to me that was stupid--if both were allowed to come out at one time I would have been better off. Now my immune system was cashed from all the chemo and now more. So as far as I'm concerned Ins. co. have to catch up to the times too. I think everyone co. and people concerned should all work together not argue a point to delay a test or an operation. It delays the inevitable--I know this is a little off subject, but it's just how I feel and it would help to manage some things in this breast cancer.But more importantly it would help so many women who can have more done at the beginning of all this to make it a little easier--there are tests that will not automatically be OK'd even when u'r dr. wants them and none of them are just a couple hundred $$$ they're very expensive. I don't get it how can it tracel anywhere while u'r getting chemo--or was it already hiding in u;r body that wasn't detectable right away. Well I certainly don't know, u ladies have a super handle on all this. Am I totally confusing??? Probably
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