TRIPLE POSITIVE GROUP
Comments
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kltb04 trying to prepare myself for the questions they may ask...i will look very different coming out of surgery. Small C going in not more than an A (until fills) coming out. I agree, because they are boys i am hoping they don't notice but my oldest is starting to become much more "in the know", he is going to be 13 in a few months. He's the one i worry about. My surgery has been delayed to Oct 15 (havent updated my profile, hoping to get a cancellation call!)
sol another member on this board (coucho) posted that her genetics councellor said triple positives are rarely brac1/2 positive. I have a friend who is her2 positive but er/pr neg and she is brac positive (i think 2) Make sense because many TNBC( from what i understand ) are brac1/2
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sol - the flaw I see is that I don't think you would be able to tell if you were receiving the Pertuzamab because the SEs from it specifically don't sound all that noticeable. My SEs from TCH were pretty much from the T+C, not so much from the H. During TCH I had my Herceptin in 90 minutes every time. When I had the first Herceptin alone infusion I got it in 30 minutes and had aching - subsequent infusions were slowed to 90 minutes, less aching - that was the only SE that was really a problem and I only had it once. I never got additional fluids during any chemo infusions, over and above what I was receiving in the regular infusion, never had any reactions during infusions, and also feel like I got through the experience decently. The good news is that you are still getting TCH like we all did, right? I am in the same boat as you - in a trial. I am flying up to Washington D.C. every 3 weeks for 2 injections, also hoping I am getting the real McCoy! I am for advancing the science but I want the drug too - I feel ya!
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Sol,
Think that's a deductive fallacy. I had very few SEs from TCH and H only. Others had various degrees of SEs but we all got the same treatments.0 -
Sol There is this gal who started TCH as I was doing Herceptin only. Our infusions were at the same time so I would sit with her when mine was done. She had no SE except for a reaction at TX2 (gave her more antihistamine and slowed her drip of Taxotere) and some taste changes after TX6. Our NP called her the poster gal for chemo. She's a year out from chemo and doing great.
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Ladies, I will be 74 yrs old in October. I had TCH-radiation and now tamoxifen. The only side effect I had from the chemo was a teary left eye,but it was not dibilitating. Radiation was a breeze,no side effects at all. I have 6 or 7 more herceptin,but so far no problem. I have been on Tamoxifen for 5 weeks,so far no hot flashes,but I do have a slight vaginal discharge. I might add that I was very healthy prior to the BC dx so I think that has helped..I don't exercise as much as you young gals,but I do try to exercise a little everyday. I have been lucky..
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There is someone on the March 2011 chemo page that is actually getting pertuzumab. She is stage four. Her first infusion, she felt crummy for a few days, but was much better after the second.
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SOL- Ya it is me that is BRCA1 Positive. BRCA1 cancers are mainly triple negative and just 5% are triple pos. I have met one other women who is BRCA1 and triple positive. Strangely, we both got BC at 32-33 years old. Cuz of being ER+ we are supposed to do 5 years of Tamoxifen, but we also need to remove our ovaries by age 40 to avoid evil Ovarian cancer. Problem is- it doesnt leave much time to have a baby. I dont have any babies yet and I want one! I find that a lot of ER+ women in their early 30s are cutting Tamoxifen treatment short to try and conceive. Still, it seems that it is not well-researched if taking Tamoxifen for just 2 years makes a big difference on overall survival. Why is it we need to take it for 5 years anyways? does anyone know why T treatment is this long?
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Cucho there was an article out not too long ago that said it is safe after breast cancer: Pregnancy Safe After Breast Cancer, Study Finds, March 21, 2012
EileenOhio I'll say the same thing I said to my herceptin/chemo buddy when she told me she had not SE. "I think I hate you a little bit"
Kidding of course. There are many that do this well.Soltantio I had Taxotere, Carboplatin, Heceptin. If you click on my name you can scroll down to my biography. It's all there. I have a list of SE but in the beginning not many and even still most were not bad or managed. You know things like the big C, teary and twitching eyes, heartburn, a bloody noses, fluid retention, etc. I did get very stiff at the end but I think that's because I stopped working out. I was worried about germs in the gym and it was winter so I didn't walk as much. I did get the nail lifting really badly but that is a rare SE… and I did get it really badly. I think the nail lifting was the worst because it hurt, oozed and smelled. It was so bad on my toes that there was only 1 pair of work boots my feet would fit in. Good thing it was winter. It all sounds horrible but really the first 3 tx were a breeze. Even tx 4 wasnt too bad.
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hi ladies
i just read about marybe's passing. Since coming to the boards i saw so many of her posts, she was so active on the threads (and not just on the stage4 forum) i read through the messages from members and was so moved by how much she touched everyone here. While i think its a blessing that we have made wonderful connections here everytime i read a heading "....is an angel" i am crushed that this disease takes so many beautiful souls
just feeling sad for everyone tonite
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rozem for a while I had to not look at those "angel" threads. Granted Marybe is someone I did get close to and met with both times she came out to Chicago. I'm still rather upset about this but I know I'll be OK. I know she is at peace. I feel lucky to have known her.0
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Kaybe-I agree with soltantio that your response was an inspiration.
Rosem and Lago- I am so so sorry about Marybe. I came across her on a few other threads and thought she was an exceptional woman. Very encouraging and positive. A hard worker also.
Cucho- so many women go on to have babies on these threads. I follow a few of them, it gives me souch hope. I love the happy stories. I realize that I had my cancer through both of my pregnancies, I just did not know it yet.0 -
I'm sorry to read we've lost another BC Org member
I hate cancer.
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Interesting study out on organic products....says NUTRITIONALLY organic is no better than the non organic stuff. It seems children are the only ones that really benefit from organic, not nutritionally, but they have less pesticide in their urine.
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Tonlee- I heard this on CNN yesterday morning and it was a big topic at my tx yesterday. I noticed weeks ago that all of the nurses eat low fat, low sugar, limited meat , all organic diet. So I have been asking them about why they eat this way...none of them really strike me as the type to believe the hype about organic foods...but they all firmly beleive that you either pay now or later. I do buy organic on most items. Pretty close to all...especially since I have small kids. But, I also pick my battles as everyone should. For me...30% is still more than what i want to get in pesticides. If given the iption between lets say 40% and 70%, i am gonna go with 40%. There are certain fruits snd veggies that do not have to be organic due to their skins or lack of appeal to bugs. I also like to avoid fillers, preservatives and gmo items so we buy everything orgain or locally made (like bread) not Easy to do here. My family has never gotten this much fiber and vitamins from our food! I used to be an extreme couponer and did not realize how that process steered our diet into such unhealthy options...just to save money.
I will say that I think that it is better to eat a diet full of fresh fruits and veggies regardless of their organic status. Benefits outweigh any (probably small) consequences.0 -
kaybe I looked into getting trial but it seemed after chemo not much was available for me. Even though I am stage IIB having no nodes kicked me out of a few trials or the travel out of state was too $$ for me. But that was last year. Now I'm not so concerned with it coming back. I'm assuming I am fine and plan to stay that way. If and only if there is something to indicate otherwise I am not wasting my life thinking about it or interested in getting more treatment that they don't really know what it will do to us in the future. I look at the damage to all my nails and think "I can live with that… certainly hope there isn't any other damage that I don't know about…yet." Being in the control arm might be a blessing.
Saltantio BRCA effects your likelihood in getting the disease. It has no effect on recurrence as far as I know.
TonLee I read that yesterday too. I always felt the reason to eat organic, at least for me, was no pesticides. I wash my veggies the best I can. Pesticides concern me more than the hormones in chicken.
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I've read several studies that claim nutritionally...canned and especially fozen fruits and vegetables are superior unless you buy locally grown and very fresh produce. Canned and frozen are picked at their peak!
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Kind of on the same topic of food...interestingly enough...I started to kind of freak out about the foods coming into our home when dr oz did that report on children's apple juice made in china. Not too long before my diagnonsis which made me fully switch to organic. My husband is half Chinese and half German and he grew up in china and he said what they eat there vs what is sent to us...is totally different. And I beleive it after seeing how his relatives eat so healthy. No prepackaged foods for the most part. They have all most no regulations on preservatives and pesticides. I started reading labels at that time and realized how much food we were buying was coming from there. It is really hard to find any juice not from there that is not organic. And you would be shocked about all of the other foods that come from there...and you really have to look for its place of origination.
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In the good news department that we all seem to forget......Had herceptin number 15 yesterday and spoke my mo about deporting. I would like it done asaspo after my final herceptin and he said it is fine with him. He explained that the standard line of thinking for years was that recurrences were most likely during the first 2 years. With the advent of new treatment regimens especially herceptin recurrences are much less likely altogether so most oncs allow them to be removed after infusions are finished. He leaves the choice to his patients but is fully onboard the deporting decision.
The odds are in our favor girls....0 -
Lago..
Agree on the can stuff. Ya gotta be careful. I use Pomi too! They make the best sauce! All my Italian friends have switched to them too for smaller meals.....more expensive but worth it imho....0 -
Yay Ashla that is great news!
Lago-thanks for the recommendation for the tomatoes. I have not looked for those yet:)0 -
Ashla I agree the flavor is so much better too. No salt either.
My onc said she prefers we keep it in for 2 years but she did say I could remove it if I wanted. At that point I didn't want to jinx anything so I figured I'd keep it in. Since I only get it flushed every 3 months it's only 2 extra visits. My onc and BS are at the same place so I do it when I see them as well. I'm planning on deportation next month. Already have the pre-op set up.
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Rozem,
I don't have any children, but I recently came across a wonderful breast cancer blog ("theSilverPen") of a woman, Holly Jacobs, who specializes and blogs about all aspects of how to properly tell children of a parents breast cancer diagnosis. Before her breast cancer diagnosis she was a palliative care nurse, so is able to offer great insight into this topic.
Here is the link......
http://www.thesilverpen.com/about-hollye/
Good luck with your surgery.
To add to the braca discussion......I am also BRACA neg. and have read that it is very rare to be HER2 positive and BRACA pos. ...especially BRAC1.0 -
Hooray Lago on deporting soon!
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Btw..I asked my mo about the link between iodine and breast cancer that omeone posted here. I've been very fortunate to have had very good to excellent health most of my life but have had a few thyroid related brushes. I have always had goiter .I was told it was the result of lack of iodine as a child as I was born in a country where it was not found in the water and the diet at that time. Don't know if that's the case . The mo was actually interested in this thyroid issue. He wants me to have some thyroid blood tests next time. It has been a long time since I was tested but the levels were fine then and I doubt there is a link but he was definitely interested in it,
Will let you know.0 -
Did everyone see the article about BPA's cousin (can't remember acronym right now) but it is as toxic as BPA. I've pretty much gone to glass containers after replacing all my non-BPA plastics. Good thing when I replaced the plastics, I got some nice glass containers which are wonderful because you store, refrigerate and then throw in the toaster oven (I don't used my microwave much at all). Can't win! Stainless is a great option too!
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My onc tested my thryoid levels when I had so many SEs from my first couple tx. There are now glass drinking water bottles that come with plastic covers to help prevent breakage. And I worked in the food industry, I don't think there is a food additive that Doesn't come from China. Like the added vitimens, minerals, flavorings, etc. I know this because of the new labeling laws about five years ago. We had to prove origin of all ingredients. And that was for liquid milk. Our ice cream plant did the same, but I don't know if all of those additives came from China, but I wouldn't doubt as our QA person was the one who told me that. Local, organic as much as possible, but you do the best you can. I am just glad we didn't go out much when the kids were growing up and I cooked almost everything from scratch .
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I buy organic when possible, less for any nutrition advantage, but to limit the pesticides.
tonlee - I gave the Fage, PB2, truvia thing to my DH - OMG, I created a monster!!! It does taste delicious - how did you invent this, did you just experiment?
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OK, ANYONE KNOW HOW TO PASTE ON THIS THING? I can copy it to the clipboard, but what keys for paste?
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Here's more on the organic foods issue from none other than consumer reports...
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Don't give up on organic food, our experts urgeSep 5, 2012 10:30 AM
A new review of previous research on organic food is getting a lot of media attention for concluding that the published literature "lacks strong evidence" that organic food is significantly more nutritious than conventionally grown food. But news reports covering the findings may be oversimplifying or distorting what the study really found, according to our in-house experts, and consumers shouldn't be misled into believing that there isn't a benefit to paying more for organics, particularly for certain populations.
The review, conducted by researchers at Stanford University, was a meta-analysis of data from 240 studies comparing organically grown versus conventionally grown food. Seventeen of the studies were done in humans; the rest looked just at the foods themselves. The researchers looked at three main variables: health outcomes, nutrient levels, and levels of contaminants, including pesticide residues. They concluded that "the published literature lacks strong evidence that organic foods are significantly more nutritious than conventional foods," though consuming them "may reduce exposure to pesticide residues and antibiotic-resistant bacteria."
But the study has serious limitations, several of which the authors acknowledge. Among them:
- The analysis included plenty of studies that did find a nutritional benefit to eating organic food, such as higher levels of phosphorous and phenols (a type of antioxidant compound) in organic produce and more omega-3 fatty acids in organic milk and chicken. Some other studies weren't able to identify a benefit, meaning the findings overall were heterogeneous, or mixed—which is very different from "no benefit" across the board.
- Only three of the 17 human studies in the analysis looked at health outcomes, and two of those focused on allergies in children—an odd metric for comparing organic to conventional diets, since there's no reason that organic diets should correlate with fewer allergies. "That isn't part of what organic food production even is and it isn't surprising to learn there may not be any difference" in the rates of allergies between children who eat organically and those who don't, says Urvashi Rangan, Ph.D., director of consumer safety and sustainability for Consumer Reports, adding that it was interesting that the authors also found one study that did suggest a benefit, for childhood eczema.
- It could take many years for the cumulative effects of pesticide buildup in the body from eating conventionally grown food to show up. Cancer risks, for example, are calculated over long periods of exposure to carcinogens. The human studies in the Stanford analysis lasted at most two years.
- The study downplays the importance of the prohibition of antibiotics in organic agriculture, which can help counter the serious public-health problem of antibiotic-resistant bacteria. Such bacteria have increased greatly in prevalence in recent years, possibly due to the routine use of antibiotics in conventionally raised farm animals. Indeed, the meta-analysis determined that conventionally produced chicken and pork had a 33 percent higher risk for bacteria that's known to be resistant to at least three antibiotics.
- http://news.consumerreports.org/health/2012/09/dont-give-up-on-organic-food-our-experts-urge.html
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