TRIPLE POSITIVE GROUP
Comments
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SpecialK - that is the same study that was discussed above by toughcookie.
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fleur - there is a current study NEOADAPT - linked below, with targeted therapy and anti-hormonals only, at Cancer Treatment Centers of America (one of our posters on this thread is a participant) which would play into the study you cited. Unfortunately, we are not there yet in the investigation of who needs chemo to drive effectiveness of targeted therapy, and who doesn't. The good news is that it is being looked at.
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Hap - Interesting article in The Oncology Nurse regarding a study that looked at the length of the Herceptin treatment period:
Still in the study stage but interesting!
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Hap, I think you're right! But at least they're activelylooking at ways to keep the benefits while reducing the harm. This article gave me a sense of relief as the reptilian part of my brain is quite certain that I'll have every single side effect of each and every treatment I'll shortly be facing... only partly joking...
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moodyblues, my husband is exactly the same and he reminds me: it is gone and we will make it through, the doctors are saying your chances are good. He wants to trust them blindly. We had a fight last time I saw an oncologist he thinks I am posing questions that make the doctors uncomfortable, take time, that could be spent to listen to them instead. It already happened several times and now I told him that if it would happen again he is not welcome to follow with me. He himself does not even understand what I am talking about, he did not read anything. But this is how some people cope with the things. Regarding those with the indelicate comments, just let them go, sometimes people can be just such schmacks and do not realize how they can hurt the others. I probably should not say anything, I am ranting here on the regular basis, hang in there, it will get better, it has to. Cherry
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Tresjolie, this is the most sad thing I heard today, I am so sorry she feels this way. I am just thinking that they do forget a lot in this age. My eldest does not remember much and sometimes her memories are incorrect, my youngest remembered a lot about herself being 3 years old when she was 5, told me about our trips and what happened in kindergarden, but now she doesn't, but she does remember our trips when she was 5. Of course, the trip is not the same as one's mom's serious illness but I believe it will get better with time. Is there any therapy for so young children, there must be, if someone else will explain to her that you will be around and that she has not to worry? I am sure you are telling it to her every day but maybe if someone else will? My councellour told me that my girl can come with me to the next appointment and ask the questions. Another oncologist that arranged the second opinion is one of my daughter's friends mom, she texted me that my daughter can come and talk to her if she wants. This breaks a parent's heart, I know. Cherry
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coachvicky, i admire your guts, I wish I had the same baldness. At some point I feel like my value as a person decreased when I got bc, that I cannot be compared to normal healthy people. I know it is crap, and I am discriminating myself, I used to have guts before, I need to get it back. People who know about my cancer are very supportive with a couple of exclusions, you are right that you see true colors in times like these. And we did not tell everybody maybe because I am afraid that some people will behave in a way I would want to punch them. That is why I decided to put some time and some distance between us. I have a friend who kind of stepped on me before my diagnosis criticizing my way of life when I asked her if she wanted to follow with us and stay with us for free in the house we rented for our vacation. She lives alone, she has a cronic illness, not life-threatening but a serious condition, we try to look after her, she is an old friend from university time. She replied that she could not afford to come to us because she just bought a new house but in the future she will have a lot of money to move where she wants meanwhile I am so far just has been spending my money on my travels. It was during the drive to the airport to pick her dad, she does not have a car. I did not say anything, but came home and told my husband: this lump I found, if it will turn I have cancer, do I care how much money I will have in the future. I love that we traveled a lot, I do not know if I will be able in the future, I do not know what my future holds for me, but I have so many sweet memories already. And it turned to be cancer. My friend has invited me twice to her new house, both times I replied I was sick. Her answer was: ok, get back to me when you feel better. She did not ask what it was. So far about colors. I am sure when she finds out she will tell her friends that it was due to my unhealthy life style, she is a vegetarian. Cherry
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Lita, thank you for the link on Her2 and Herceptin, I wrote down two questions for my oncologist based on this article
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Thank you Cherry. My husband (when I was first diagnosed) said I was researching too much, he felt it was not good for me (my mind and it's sanity) to keep looking and I should let the doctors handle it. I on the other hand wanted and needed to know as much as I could so that I could understand what I was up against, I had to tell him...you are you, I am me....I plan to do what will give me a peace of mind. I was ignorant about BC, totally ignorant because I chose to be, I mean it would NEVER happen to me right? What a surprise.
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toughcookie, well said about the studies, my sentiment exactly. There somewhere must be a study that suggests cancer came from space.
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Thank you Cherry. My husband (when I was first diagnosed) said I was researching too much, he felt it was not good for me (my mind and it's sanity) to keep looking and I should let the doctors handle it. I on the other hand wanted and needed to know as much as I could so that I could understand what I was up against, I had to tell him...you are you, I am me....I plan to do what will give me a peace of mind. I was ignorant about BC, totally ignorant because I chose to be, I mean it would NEVER happen to me right? What a surprise.
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Hap, seriously? Tell a librarian not to do research? That would be as futile as telling me to stop eating popcorn! (No butter, non-microwave, of course!
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Lol Vicky - love the nipples comment
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MoodyBlues, you're right about getting out. I find that when I go so far down my rabbithole, that going out and doing something helps. I'm not always good at it, but I try. You sound very strong...
Tresjoli, your comment regarding your wee one emphasizes the fact that kids are so unique - each person has their way of processing. She sounds very deeply sensitive - wow, so young to be tuned in in that manner. I'm not sure even how you'd go about it other than to reassure her. A counselor could be helpful too...
On the topic of Her2, here is my path report. Hoping someone can interpret for me (SpecialK?):
Her2 (Erbb2) by IHC results: Positive (score 3+)
Percentage of cells with uniform intense complete membrane staining - 90
Her2 (Erbb2) by IHC Primary Antibody: 4B5
There was some other mumbo jumbo about meeting the latest version of the ASCO/CAP Guidelines (Canada)
Does this mean anything to you? I think 4B5 refers to a testing protocol that they followed - it's not a measurement. And with 3+, that means I'm definitely positive, but I'm not told anything further about 'how positive' I am. Just know I'm not borderline (which would be something like 2+, I guess?). Sounds like you all get a lot more detail in the U.S. I got complete response after chemo (and I'm ER + 90%), so I've always assumed I was more Her2 driven...
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moodyblues, my husband is exactly like yours and I am exactly like you. I also told him: this is me having cancer, you so far have not read anything on the topic, what are you pms:ing about? Your only job is to be there for me when I try to understand how I shall interpret all this information and make an assessment about my chances for getting better. If this assignment is too much for you, I will do it alone, but I hoped that after all these years I will not have to do it, because the truth is I already am alone, your support is important but what can I do if you decide not to follow? I will continue alone and you will not be there to stress me. It seemed to do the trick, he has now promised not to say a word. And I said that he is allowed but only when he seconds what I am asking. But they mean well, and it will get better.
Just wanted to add, when I said all above I yelled a lot on the phone. Maybe I am getting my guts back. Cherry
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PoseyGirl, my BS told me when she was presenting pathological report that Grade 3 in TP tumors is almost always a sign of strong Her2 overexpression and higher Ki. I am looking for Ki67 research right now.
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Ladies, I know we are having a scientific discussion now and I am very into it, but I just wanted to tell you that I cooked Rebecca Katz Magic Mineral Broth and I am overwhelmed, it is more than I have expected. Here comes the link:
https://www.rebeccakatz.com/magic-mineral-broth
It is delicious, earthy, a bit sweet and mine is also spicy I had in it half of my own grown chili. I did not have kombu and junipers but I had sage and rosemary. I am having it right now, it is 1 AM in Stockholm, I had my weekly Taxol today and am high on cortisone but will head to bed soon. I just wanted to share it with you. I am very into soups and cooking in general.
Cherry
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Thanks for sharing the recipe link Cherry. I believe in the magical properties of broth! Congrats on finishing another taxol, rest up!
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HapB, I am very sorry that your mom was sick while you were young and you felt this way. Kind of explains why you are so protective of your daughter and do not want to be a burden. But if you are feeling alone, call her, I am sure she will come and visit you. It is ok to feel low and accept their help, this is one of the reasons we had children, not be alone, to have them around us, especially during the times like this. My eldest wanted to come with me to my chemo but I told her no because the environement in the clinic is so depressive, no tv, just a bed, they could do better. But if my husband would not have followed I would have reconsidered. You all said they are resilient, in times like these we have right to expect all help we can get. Cherry
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Thank you, T-Sue! I think I will have another cup first, not without my soup.
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Thanks, Cherry...I remember seeing that. With 90% staining, I guess it's clear that I'm hugely Her2 positive.
I could read and read and just get myself stirred up. I think I'll stop reading the studies for now. I do see, however, that more research is needed on the Her2 ratios, etc., in terms of treatment response.
Thanks for that lovely link, Cherry! I will look at this; it sounds awesome
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thanks guys...shes five now (she starts kindergarten tomorrow) and we have started counseling with her (and my son)...hugs to all!!!
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PoseyGirl, yours Her2 figures are from IHC if I understand correctly. I was told that they did IHC on me but it looks I got FISH figures: score 7 and 13,8 copies. it is high, when I ask the second oncologist told me that she did see higher.
Somewhere on these boards i saw that chemo is the most effective when Ki67 is around 50%. This turned to be exactly my figure so I hope it is true. But higher Ki is associated with high recurrence risk too. My oncologist though said that other factors weight more than higher Ki.
My GP is a lovely lady but she keeps saying to me that all this research does not contribute to my mental well-being. She wants to put me on an anti-depressive instead. Next time I will ask her what she would do if she were me. I am not depressed, not yet I believe. I have PTSD like coachvicky said and you cannot treat it like depression. My GP told me that I should gather my strength for the treatment and I said shouldn't I understand all about the treatment and about my chances.
Cherry
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Cherry, I'm making my second batch of magic mineral broth tonight! It is amazing stuff. I ordered the Rebecca Katz cancer fighting kitchen from Amazon on Friday and it's going to be here tomorrow! I'm so excited. I love cookbooks!
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toughcookie, it truly is I cannot praise it enough. I have also ordered a book called something Anticancer food recipies from Amazon right after I got my diagnosis and I never got it although I paid with my card. I have to follow it up.
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HapB, I am sorry about the broken home, my husband comes from a home with parental misconduct. A lot of problems comes from childhood. He is very protective of our children. I always wanted a family. I have an aunt who is in her late 70-ies. She lost her son to alcohol abuse when he was still young. She has always been sick and lived with her new partner in another city. My cousin grew up with our grandparents, and I think it was best for him. But now we are her only family, she lives close to my parents and rely upon us. She is very afraid of be left alone, now when my mom is here with us I know it is hard for her. So, I did have my children for many reasons, but one of those was not be alone, not only when I will be old because at the moment I do not know if I will make it to old but also . to experience all this amazing journey. I know people are different but I do not think your daughter will end up less independent for being able to help you, you know you will be happy to see her, she knows that too. You cannot be a burden, you are her mother, tell her you miss her and want to see her more often. It can only be for the better. Hugs, Cherry.
Otherwise, the cats are quite a company too, mine is sitting besides purring, she had to sit up, she got hiccups. And now she went to eat more.
Good night everybody, it is 2.15 AM here
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HapB, this is Magic Mineral Broth, let me introduce:
https://www.rebeccakatz.com/magic-mineral-broth
Cherry
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Deleted - the dreaded double post, lol
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hap - it's important to understand the chart you posted - the US is showing roughly double the breast cancer rate of the Caribbean, yet we have 10 times the population, so the chart shows a somewhat distorted picture. Micronesia is 8th on the list but only has a total population of 100,000. As far as moving to Asia, those countries have a high rate of stomach cancer, pretty close to our breast cancer rate, but the survival rate is worse.
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My reference is regarding your comment about industrialized countries and cancer rate. If Micronesia ranks pretty high but only has a total of 100,000 residents it is unlikely that they are industrialized. Same with many of the Caribbean nations. I think it's important not to assume too much about causation - there is still a lot that we don't know about what causes breast cancer.
Edited to add - you might consider signing up for Dr. Susan Love's Army of Women, her organization is looking at people with breast cancer, and those without it, to better understand why it happens. Here is the site:
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Cherry,
Got you beat on FISH test results. My average HER2 signals per cell was 14.9 and my score was 9. I guess MO was right when she said that my cancer "was growing like kudzu in the lab." Oh well. I had a good response to chemo and targeted therapy -- no active cancer left after AC + T.
Thanks for the info about magic mineral broth!
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