TRIPLE POSITIVE GROUP
Comments
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Well, you know, we can get angry as much as we want, but the fact is most of the people outthere do not know what it really is, I was one of those people who thought it was curable if they caught it before stage 4. I did not know anything about the progression from early stage even after chemo. It was all a huge shock to me. And I still thought that I knew what I in my age needed to know, I did the monthly exams but I knew that statistically it happened to older women and the risk of it happening to me at my age and no family history was insignificant. This is what I have been told by the doctors as well. And here I am, now I had to know everything because it is basically about my life. But the others there without any friends or family who had bc, they don't have any clue, it is not good it is not bad, it is what it is. I agree pink ribbon sucks to us, but these orgs with all the profile products are spreading awareness, this is not for us, this is for those who doesn't know, to tell them about us and make them understand that it can happen to anybody. It is done in the manner of solidarity, bc happens but not to everybody, they do not want scare people. Of course you can always get everybody into a room and start telling dreadful ugly truth to those who will never get bc and in a blink of an eye we all be living in North Korea. We want compassion and awareness from people not get them irritated, the majority will never get it. There are 200 different cancers, do you want to be aware of all of them?
I am sick of this awareness month this year, but a year ago when US election was all over news I saw someone posted on FB: I will just pretend Obama is still the president. This month I decided to ignore it was October, I am not in the city and not at work and do not watch TV, the clinic that treats me is the reknown place where there cannot be any pink ribbons, so no October for me, so far I made half of it through. If I decide to do anthracycline there will be no November or December for me,
Cherry
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I do not think Swedes donate that much for these types of research, but they do donate a lot for organisations that are operating abroad, Red Cross, Amnesty. For such things as donations for domestical caused we pay taxes, have medical insurrance for everybody and rely upon the knowledge that the government will distribute the funds as they should. Maybe I am wrong but I think it is like that. We have Breast cancer fond in Sweden but I am not sure they are funded by donations but mostly by government Cherry
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I’m the lurker here, this October I got so sick of pink also. Perhaps because I’m mad that I have BC, I realized how cruel the pink ribbon used us to make money.
Elain - I read your story, you are amazing mother may God help you to find a better home for your boy.
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Thanks for the great articles specialk. Before my own diagnosis, I too thought BC was curable, manageable and not "as bad" as other cancers. It is quite frustrating to see the marketing dollars poured into the Komen, Pinktober and other pink nonsense. That money, along with all the money raised should go toward finding better treatment options and/or ensuring all women have financial support for the care they need. People donate thinking they are helping, which is a good thing, but not aware of how the money is actually used.
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I'm so sorry to read about the challenges you face as a parent, Elaine Therese. It is my impression that in the US, it is extra challenging finding supports for people with disabilities. It's not easy here either, but it is horrifying to think you have to wait 10 years at least. As was said earlier, you are a very admirable lady. Has anyone else in your family had autism prior to your sons? I am curious about heredity.
On the funding piece...I really hope that some of you who don't want to support bc fundraising any longer possibly reconsider. As SpecialK referred to, there are organizations who dedicate all their monies to research. If you google, you will find them. Metavivor is one of these. 100 percent of funds raised go to researching cure for metastatic disease. There are other good organizations. I really agree that the pink thing has had its day, and its time to evolve the conversation. I also agree with Cherry that we can't use scary markeying tactics or people will turn away out of fear. It's a fine line in terms of getting through to people and keeping them listening.
Thanks for your inspiring words, Kimcee; it's very helpful
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PoseyGirl,
No, autism doesn't run in our families. But, my husband and I both have aunts with schizophrenia, and there is some relationship between the genes that contribute to autism and the genes that contribute to schizophrenia. Also, my husband is nine years older than me, so there's the "old guy--damaged sperm" theory as well. By the way, I'm not a super-hero; I'm just lucky enough to have a flexible job that allows me to keep my kids at home (for now).
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ElaineTherese, I red an article about the the correlation between fathers age and the risk they children developing schizofrenia, but it said that it is mostly valid for men who are in their 50-es and had some hereditary factors. It did not mention autism though. Your situation is challenging, stay strong, Cherry
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The truth is as Posey said there is a thin line between people listening and feeling compationate and turning away thinking why is it all about them, how all this our fault that all this imposed on us and make us feel bad? I have now no contact with two of people who I have considered my closest friends. One of them has a mother who had bc twice and is from her mother side of Jewish ancestry, which means she has an increased risk of developing it herself and she has no family. Both of them do not live here so they could not help much but stay in touch, talking to me and listening, guess what, they did not, and I conftronted them about it and got excuses but the same behaviour again, I got angry and received radio silence. My other friend contacted my husband telling him I became inadequate and impossible to talk to. I was ashamed. To begin with nobody did talk to me since the diagnosis, I am a pariah,we wish you well with your treatment. This is the first reply I got from my friend: it is treable! I talked to you guys more than I did to anybody since my diagnosis, I am up for this friendship thing with whoever wants it, I believe I lost for good a friend I had from the second grade. The reason I believe, no one wants to be reminded of itin their daily life. As coachvicky said once you will know who your friends are and this is a gift most people won't have.
What I am trying to say is what we see with pink ribbons makes us all sick, no doubt about that, but it is all about marketing and we are not a target group. For us it is hypocritical and unethical but it is called spreading awareness for the reason. What do people know about other cancers? Nothing much, much less than they know about bc. So even if I cannot stand it I appreciate them talking about it, and it is easier to raise the funds positioning it like thanks to your contribution women who get bc live. If they instead start telling there is no cure and women die, then I believe they raise less money. I don't know. But another example, without revealing much about myself but I am working in pumping business and close to Marcom department. Imagine a seweage pump, how do you sell it? Ok, there is no need to sell it to a common man on the street but still you have to produce a lot of marketing material, it never contains the actual picture of how this pump actually looks in action.
People think bc is curable, this is it, they have to find this cure, it does not matter to me how they raise the funds or spread the awareness to raise more funds and that this money also pays the fees of expensive marketing consultants who are making all these strategies. And what about researchers, do you think all those fellows are contributing? What percentage of the funds poured into research actually give some dividends in form of breaking through medications like targeted therapies? Do you know how many of them just are going to work day after dayto their research facilities wihout much ambition to achieve something, I have friends in research, believe me it is all about making a living in the first place. But we never question this aspect, we just feel this awe when we talk about research and never critisize it because this is where our hope is.
Cherry
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Aww thanks for the love guys! Remember my husband and I went through several miscarriages and then a successful pregnancy with a baby that never slept (for two years!!) before I got cancer. He and I are just hitting the reboot button and remembering how to live without a crisis, cause it was just too much. The sex thing just has not helped at all. But we will get through. Didn't mean to make things sound so dire love to all...but imagine being in fight or flight/grief mode for 7 years, and then...stillness. it was like waking up from a nightmare and saying wait, who are we again? Oh yeah husband and wife! Lol...
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Cherry, I had 3 infusions of FEC and 9 of Taxol before my operation. Just wanted to reply quickly to your question but think you already have gotten your answer. Depending on the size of the tumor the treatment varies, some get operation first, treatment after like you having a smaller size tumor. I agree with SpecialK using the "heavy artillery" might not be beneficial in your situation and just cause more harm, but who knows what is best...I think you have to follow your instinct, heart and trust your medical team, the later so important threw this hole ordeal.
I have been working full-time for 3 weeks at my new job. I am doing it but it is hard and would love to sleep in at least a couple of more days a week...:) but it takes my mind of the cancer and got to love that. A friend of mine being triple negative just had a recurrence and it will be her 4th so praying for her and her medical team to get her cancer under control one more time.
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Swedes donate a lot Cherry...I have a company and we have donated a value of half a million US dollars to women who undergo chemo threw my daughter company based in the US...just saying...I am closing my company after my diagnosis and now working a "normal" job for the first time ever...so all my proceeds, stock etc is being donated for this cause..:) Myself and my coworkers are very proud to be able to do this...and hopefully we all get some good karma from it..
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When it comes to donations, I only donate and ask others to donate to this site (breastcancer.org). I would have been lost with the research on this site and the support from others such as all of you in this forum.
When people found out I had breast cancer, I was surprised at the reactions. A participant in one of our Leadership Program gave $100 to the Susan B Komen Foundation. A $100. Really. That is a lot of money to me! Another participant made me a pink and grey quilt that fits a king size bed. She hand made the thing! I was on Facebook and found a friend's daughter running in a local race with my name on her shirt. And a friend who coaches girls volleyball sent a picture of his team playing in some tournament with my name.
I didn't know any thing about any of this until it happened. What I realized that they were trying to show support in some way and maybe the only way they knew how to.
One time I arrived 2 days into a training were conducting in the Northeast. I live in North Alabama, USA. I had chemo on a Monday, Neulasta on Tuesday, and got to the training on Wednesday. I had to get myself in to the group. It was my first time to tell a group that I had cancer and was taking chemo. All three trainers sit upfront for introductions. My husband, Richard, and they other trainer (and personal friend) joined me when I did my introduction. I turned to Richard in tears. It was hard to get my introduction out. Then I saw he had a T-shirt over his dress shirt. The T-shirt had a big pink ribbon on it. The shirt read "my wife's battle is my battle." It has been his battle physically and emotionally too.
I melted and finally got thru the introduction. Then one the participants blurted out something like, "I didn't know you had cancer, I just thought you got an edgy haircut!" That sure gave me a different perspective! Here I was worried about how I looked and some 30 year old thought I was "edgy."
And about the trainer who is a personal friend... She was reading a book in the hotel lobby during some off time. I asked her what it was. It was a book she found written by a BC Survivor on how to be a friend to someone with cancer. She told me that she didn't want to do anything wrong.
I understand that those ribbons and especially a pink cake can be annoying as well as superficial. For me, I felt these people were trying to show support. Some people that I thought would show up, never did. That hurt a lot. So for those who did show up, I accepted what they offered in support.
Vicky
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I did not mean to brag Vicky...but we closed shop and was able to do this so I am happy about it. Any kind of contribution is of great value, especially time and many of you ladies here give so much time to others that I am overwhelmed by this kindness. We all do what we can all over the world to beat this illness for so many. The support and information given from this web site is completely priceless. I deleted my post in case someone finds it offensive and bragging is the last thing I am interested in at this point.
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Oh Kattie ... I am so very sorry. I did not see anything negative in your post. I just had the experience I had with all this pink stuff.
Again, I apologize.
Vicky
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No, you did not offend me at all, just happy I was able to contribute financially in a large way to women undergoing chemo since Cherry thought very few Swedish people did that, I wish I could just have a cure for all of us but no such luck yet...the pink ribbons and other products can be annoying, reminding one of all this but thinking it is still a good way to remind people to check themselves, not skip the mammograms etc especially those not yet effected. I think most people connect cancer with death, maybe that is why the color pink was chosen, the fact treatment has improved so much is not as known but still to have picked the color black would have scared people even more...:) Hope is important for all of us going threw this.
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Kattis, I understand better.
Funny thing is before BC I always wore pink. I even had a pair of pink jeans and shoes (until my dog Baxter got the shoes).
Now, It is a hard color to put on, I always found pink uplifting.
Vicky
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Thank you for sharing your perspectives on Pinktober everyone. Vicky, I love your stories of support. I agree that many of our friends and family see the ribbons as a way to show support other than bringing over a casserole. It also true that the people who don't step up are disappointing. I try to think that perhaps they just couldn't face the trama of my situation or they we're just not true friends anyway.
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Kattis, the last thing I wanted was to sound as this ungrateful foreigner who is spreading false rumours about the country where she lives, and yet I did. I am not a native Swede. I am sure I am completely wrong about Swedes contributing because people do not speak about it at all, I confirm that bragging is absolutely the last quality Swedish people possess,it is considered to be such a bad taste, so may be no one ever has mentioned any contributions to me. I have not done any systematical donatio for bc myself
Cherry
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coachvicky, you have amazing friends, the one who red the book, this is a true ona for sure. I chose no to tell everybody but I told has disappointed me except for my manager, he had surprised me and I do not know why I am surprised, he was always like this, this is just this feeling I have that I am not worth much at this point.
Cherry
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You are worth everything Cherry...and you will make it threw..your hair will grow back even thicker than before and your skin will look more radiant..my favourite phrase from my onc is still "you will hopefully just see this year in a (year) few years from now"
Hugs
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Kattis, I spent several hours yesterday reading Swedish national care program for bc, the latest one from 2014, 303 pages to be exactly. Weekly Taxol is mentioned as a complementary treatment and the best regimen in terms of survival for aggressive bc is considered to be dose dense anthracycline plus taxane. Not even docetaxel is that effective. Four dose dense docetaxel three weeks apart is equal to weekly paklitaxel in terms of survival, Chapter 13. The following chapter is about targeted terapies for Her2 positive and it says once again that anthracycline + taxane is the best regimen that has less recurrence rate. Nothing about weekly Taxol as a standard of care. Cherry
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Tresjolie, you will get through it, just remember you two did nothing wrong, you just went through a lot that can break anybody. Coming from someone who is considering either divource or conselling every other day, and there is no sex issue because this is completely gone, I am considered sick, who wants to have any psysical contact with a sick person, my looks do not help either, neither me being sad and grumpy
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I don't think I've posted since my birthday on 9/20, only significant because it was the same day the Contura mammosite was inserted. My surgeon had used the term Savy so I researched everything on the Savy, but when I got to his office, I found out it was the Contura. He used Savy like someone would use Kleenex for all tissues. Totally threw me off. The next weird thing was how many people in the room: the surgeon, nurse, and two representatives from the mammosite company! At least one was actually a clinician, though, but it was still strange. The clinician talked my surgeon through the procedure, and I love my surgeon but this was uncomfortable. He typically used Savy but thought the new Contura would be better. I can tell you that I would think long and hard about doing brachytherapy again (god forbid). It was incredibly painful because the ultrasound showed a nice pocket where my tumor had been but there was a lot of unexpected tissue instead of fluid and it took quite a while to place it. I cried the whole time and squeezed the nurse's poor hand. I haven't been crying a lot, but I felt like my tears during this procedure were for more than just the pain. They were all about "why me?" as well. I was glad my treatment was 5 days instead of 4-6 weeks, but it was invasive, uncomfortable, and I don't know if I'd make the same choice.
Two days ago I had the power port placed, and today it is red, burning and itchy. I'm so afraid of infection because I had Cellulitis after my lumpectomy. I've been on a regimen of antibiotics for the past week, though. Could I still get an infection? So unhappy. Sorry I don't comment much, I work a lot, but I appreciate reading your stories.
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Thanks, HapB! To be on the safe side, I'm going in to the dr tomorrow morning just so they can look at it. It's below the port, so it might be an allergic reaction to something they used
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Danna- Sorry to hear about your Contura experience. Mine was just the opposite. During my lumpectomy, surgeon placed a balloon catheter filled with saline. A week later I went in and they slid the balloon catheter out and slid the contura in. Only local anesthetic, very little discomfort. Started my 5 day radiation the next week. Never had any discomfort, the last day they removed it, with a deep breath and exhale it was gone, only felt a little pressure. My whole experience was positive. My surgeon was great and had placed contura many times. Would highly recommend it.
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BJI, I saw you did weekly Taxol, was your tumor larger than 1cm
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BJI -- I think the problem was that they didn't put it in for two months after my lumpectomy. I had Cellulitis and then genetics testing. Everything dragged out
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Cherry, but the report is from 2014..I think they know more each year that pass..it seems science is moving pretty fast...I am confident in my medical team so not questioning my treatment at this point, though I think the monitoring and aftercare could be a bit better...reading up a bit on the latest neratinib and today noticed another study on this site :
http://www.breastcancer.org/research-news/verzenio...
so things are happening fast...good things...we have a lot of options...I do admire your dedication to learn about your situation and interesting to read your posts.
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Kattis, it is our Nationellt vårdprogram bröstcancer, it has no more recent edition and it contains all recommendations and what those are based on. I will talk to my oncologist on Tuesday, I need to get some answers, I have some trust issues, even though they are the only people who can help me they cannot understand what I am going through and I feel that all of them are getting annoyed when I ask a lot of questions
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Cherry-sw - my tumor was 1.6, finished up Taxol August 16th, doing Herceptin every 3 weeks til May.
Danna - Yes, I could see that as being a problem. Everything moved pretty fast for me, biopsy April 6, lumpectomy April 29, radiation May 8-12, port placed May 30, Taxol/Herceptin started May 31. Had no issues with surgery or radiation. Minor SE from chemo, actually think herceptin only is more fatigue, and I did start Arimidex September 14th. Have had 2 echos, both normal, have my first mammo in November (6 month). I opted to not ring the bell in August after chemo, waiting til May when done with Herceptin.
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