TRIPLE POSITIVE GROUP
Comments
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Tres,
When are you taking your lexapro? Can you take it at night before you go to bed?
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Tres,
are you taking the lexapro for depression or for something else? thanks
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Cherry - here's an article about breast cancer recurrence that breaks results down by hormone and HER2 expression:
http://www.medscape.com/viewarticle/859934 (Well, rats. Clicking on the link works on my desktop but not on my Ipad.)
The table is illustrative of the fact that Triple Positives do really well, even compared to HER2 negative breast cancers.
HER2+ stats can be really scary because the studies often lump all the subtypes together. Triple Positive cancers are often shown to have a better prognosis than other HER2+ types, as in this study. It's hard sometimes to tweak that out of study results but more recent studies seem to be focusing on the differences among breast cancers and how that impacts outcomes.
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Lita19901, thank you I cannot register though it does not accept my account, the page requires log-in. I have also been looking at some studies showing the advantages of being +++ but they all show different figures and it seems the recurrence stats is still high. I know worrying is pointless but cannot help it, it just sucks Cherry
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Hi Cherry,you are stage 1A which is VERY early. You have a very very good prognosis. I'm not a doctor and I realize we can't predict cancer, but I'm pretty sure you have at least a 90-95% long term survival outcome. If I'm off, it's not by much. So please feel comforted in that. I've combed the internet since being diagnosed (to my detriment as you can see) and I feel pretty confident in stating the above...trust me in the sense that I've consumed a lot of literature. Stats will vary and some sources make things look really awful. But I know it's not an awful outlook for you. Remotely. As said, there is always that question mark, but I hope you can relax a bit.
SpecialK, yes, I figured you knew the UK piece. But LifeMath also includes a Her2 component - it asked me whether I was positive or not...do you think that it doesn't do much with that info? I felt the LifeMath 'questionnaire' to be more in depth than the Predict tool. I agree it would be nice to have some more in depth and up to date tools. I'm sure those are in the making. The stats I've seen out of the UK seem about 10% lower than what you see in North America. The results of that tool came up with something in the range of 15-20% less than the LifeMath result. I felt the LifeMath one was more 'generous' than I expected too. I expect the truth/fact is somewhere in between. Time to put this aside and eat a huge piece of cake, drink a huge glass of wine - you know, all the things I'm not supposed to do.
Oh, and I've seen reference on here to some questions around a more plant based diet? I'm curious what that's about? I personally will not ditch meat, but I'm reducing it by at least half and changing what type I eat. I'm in the process of radically changing things (I already started a bit before, so it's baby steps and nothing ridiculously shocking to take on).
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posey - lifemath factors in the risk from Her2+ but not the benefit of treatment. That is the difference between that calculator and the one PREDICT uses. As far as the plant based diet - I use that proportionately on my plate with the majority of the plate filled with plants, and 25% with lean, clean protein - I am not ditching meat either, just being more picky about where it came from. I try to limit to organic, no antibiotics, pasture or grass fed, wild caught, or free range animal products - since ultimately we are eating what they were eating, lol!.
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Cherry - Try googling "Study Refines the Risk for Breast Cancer Recurrence" and see if that does the trick.
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You know what's so bizarre??? I just did the LifeMath calculator again and it spat out a totally different (much worse) figure for 15 years! I had done it twice before, so I think there was a glitch at the time I did it earlier today. Oh, isn't that nice. Super.
Thanks for mentioning the difference between the two tools. I haven't really used either and tried to stay away because I know that we can't each be completely reduced to a specific stat - and it's scary. But there I've done it!
I am trying to follow your thinking on the meat. Changed over to local, hormone free, grass fed meat with less emphasis on red meat. I basically will focus mostly on chicken and the right kind of fish, but allow small portions of red meat maybe 2x per week (or once).
All I can say is let's hope there are some good drugs on their way over the next few years that can be added to the arsenal.
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Hap - the 85% is the same as the Predict 10 year stat for women our age/stage who are undergoing all prescribed treatment. Women Cherry's age/stage undergoing all treatments have a significantly higher rate using the Predict tool.
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Hap - I ws assuming PR positivity in the ER+/HER2+group.
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hey guys...yes I am taking it for depression. I've been having a bit of a hard time since treatment ended. I am thinking about switching it to night time and move the tamoxifen to morning....
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Hap, again! I worry about metastasis but I would also be devastated if two years from now a mammogram picks up another tumor, the idea of going through just this again.So stats that show a diminishing risk of recurrence cheer me up!
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Tres,
Yes, definitely switch the timing of your meds. I wish Celexa made me sleepy, but it doesn't. In fact, I've suffered from chronic insomnia for over 15 years. I'm on extended release Ambien for that now. It's better than tossing and turning for hours.
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celexa made me mentally feel great, but I was having irregular heart rhythms and could not sleep! Effexor made me feel like i was having a manic episode. Two pills in I threw them out. I am Switching timing today...tamoxifen in the am and lexapro at night...
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Has anyone here done the BluePrint genomic testing for subtyping?
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fleur - I think Blue Print is part of the package if you do Mammaprint testing - are you wanting to do just the Blueprint to determine whether you are Her2+ (ERBB@) or Luminal B?
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Hi PoseyGirl, I suspect it will be a long and boring rant written in bad English, I am sorry. I also do apologize if it looks like I am coming in into discussion as soon as you discuss some topic with others but this is just a coincidence, it seems I am worrying about the same things and have some similar background. Yesterday was not a good day in this regard, I spent the half of it looking for statistics since I can no longer read any blogs because when they end bad I become so sad that it is like the hope leaves me and I get so sorry for those women and everything seems like it is all useless, and this is it. The feeling itself is indescribable and you here are the only people I know who I do not need to explain it for. Now, what I can say in my defense, if I can put it so, is that I am new to this diagnosis and have not been experiencing any really happy feeling since I got it, the life I had before it has so to speak ended, and I know one has to find her new normal and so far I am not doing very good in this regard, but as I said I am new to this. My search of the internet is not that systemized and I know I have just started but I am looking at the aggressive cancer statistics and it cannot simply look good and it makes me sad, just sad and I am having breakdowns, in average at least once a day. The doctor I met right after my diagnosis, our local but internationally acknowledged frontal figure when it comes to bc, a bc sugeon and specialist, a member of all possible boards and a strategic consultant when it comes to the process of directive discussions, she told me when I was sent to her right after my biopsy: people are in shock right after the diagnosis but after a couple of days when the chock submits they can return to work and start treatment, you will not feel this way all the time. I do not know if the lady has iron nerves when it comes to emotions or it is simply easy for her to say that because she is not in my shoes, or instead has seen so many in my shoes, but so far after more than two months I have not landed in it and I think I speak for many who would say the same thing. I am not feeling well mentally and sometimes I am sitting there trying to work and I caught myself thinking I am fine, what deadly disease, I am feeling fine at least at this very moment, it cannot be happening what they are saying, and sometimes I just realize this is cancer, this is horror, it happened to me and compared to other healthy or at least cancer-free people out there my life has not the same outcome anymore, it is not worth that much longer, not in terms of long term life statistics. I believe I have already mentioned it but according to our Swedish statistics bc is the second cause of death for women in age-group 40-49, women in this age simply do not die of other causes that much than because of bc and how common is bc in this age, one in 60 women? And how many of those who gets bc relapses and dies of it and it is still the second cause of death for this age-group. This means that all reasoning about that we all are mortal and do not know what will happen tomorrow is not exactly this eligible for me, in terms of survival I am more mortal than those without bc are and it makes me sad and scared. And when it comes to bc, it is unpredictable even if we are looking at trials and statistics based on those all the time. People with large tumors survive and leave long lives meanwhile people with no nodes involvement get recurrence and no one knows who those people will be. This is what makes me hyperventilating, we do not know, this is what you get from the oncologist and you realize this guy is your only hope and the hope is all we get, he cannot promise you more than that but he does mention that it goes well for the most of people. As you mentioned, well for the most of people does not help if you will not be one of those. These new conditions, I have not get used to them yet, and I am trying to get the knowledge of the statistical outcome and sometimes it calms me down but sometimes it does not. And even if everybody is looking for some positive features in their diagnosis (still cannot understand how it could be seen positive, but my surgeon told me to see it this way) I cannot say that I am feeling better that it is smaller than someone else's, because it is individual. Besides if it were up to me I have chosen to obliterate this disease once and for all, anyone would do the same thing. After all 95% survival statistics means tragedy for those 5% who did not make it and I cannot even imagine the extent of the tragedy, I get a breakdown, I get it so often now that I have to stop but it comes and goes. I search and search for info and it does not give me any comfort but I feel uncomfortable of not doing it either. I know you of all people know what I mean.
Now we have also told our youngest daughter today after we had a meeting with a clinic councellour yesterday. We did just as the councellour said and told her everything except of the actual c-word and I saw that she did not connected it on her own. Now I know we will have to tell her even that eventually but I felt that it was enough for today. She is my biggest concern and I hate the fact that her childhood will be affected by this but as the councellor lady said: I know you do not want her life to be affected, but the fact is it already is, does not matter whether you want it or not, and it is better you will tell her yourselves so she will not keep wondering and being sad on her own. As I red on some blog of a mom who had bc, she decided to put up some rules at home and one of those was: no one will have to feel sad alone, it has to be shared with everybody in the family.
I wrote a lot, I do not know if anyone can read it to the end and I understand them. I wish I were one of those people the famous BS I met told me about when she mentioned that they will be shocked for a couple of days and then will go on with their lives, apparently I am not, but she neither is one of us, and I do not know where from the wisdom about the couple of days is coming.
Finely, thank you to all of you who takes time and reads my questions and replies both with encouraging reassuring words and scientific/statistical links, my appreciation is beyond words. Like our earlier discussion about postpartum bc for example, it was very important to me, I have been thinking about it since I saw somewhere that it was one of the risk factors. For some reason you read about the statistics but you try it on your own situation, knowing there are people out there who are going trough the same thing is crucially important. Ok, end of my rant, I apologize, Cherry
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Lita, it did, thank you, reading it right now
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SpecialK, I was interested in the luminal results.
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Lita, thank you for the link and now I recall that I have already seen this table somewhere when I just started to search the internet, do not even remember if it was before I found out about my tumor type, or if it was after. These are much better looking statistics but the question is why there is so big difference in different reports and studies. I need to learn how to sort it out. Thanks again, Cherry
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Cherry
Rant on! Use this community to get it off your chest (no pun intended).
I don't know anyone who gets over the shock in a couple of days. There are still days I wake up and think WTF happened!
When someone says something like most people get over this ... , to me, I reply "When YOU had breast cancer how long were YOU in shock?" Then they say i haven't had breast cancer. I reply, I thought so or you would mot make stupid comments like you just did. I don't make a lot of friends when I say this but I don't want friends or medical professionals in my life that say stupid things.
Your English is just fine too. I don't even speak another language much less write in one.
Vicky
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HapB and Vicky responded so beautifully to you Cherry and I agree with all that they said.
I will add that my anxiety came in waves - immediately after diagnosis i was paniced for weeks. Then I was so focused on my double mastectomy that all my mental energy went to recovering. Then I was focused on starting chemo. A few weeks into chemo I again became very anxious all the time. I finally broke down with my oncologist and she said it was very common to feel this way and prescribed a low-dose antidepressant. I also began seeing a psychologist. Both of these have helped me enormously. I still worry, but it doesn't feel as desperate to me. This forum is a great support but is also useful to talk in person with a professional therapist who is experienced with bc patients.
I hope you find moments of peace!
Sending hugs to everyone!
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Hapb, I have not yet begun Tamoxofin. My oncologist told me this past Monday that we would talk more about Tamoxofin when I return in 3 weeks to start my herceptin-only infusion. I had mistakenly thought that the Tamoxofin would start AFTER I finished my 1 year of herceptin. So I need to do some research on it. I've been on "don't read about it until I need it" basis since my diagnosis. It keeps me from getting overwhelmed. Pls let me know if you recommend any resources/overview about Tamoxofin.
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Oh, HapB, thank you! Some people are just great in encouraging people like you are, I think I am just good in whining, at least now. I used to be good at my work before though, do work for an global US corporation actually. Now when I sometimes dive into work and forget about my bc, I still feel I am not that bad at what I do, but when I get back to my new reality I just wonder where is this person I once used to be, it has just been over two months. I would like to continue working but my problem is my mental condition is so unstable, that I switch between being a normal person for a while to being a complete trembling wreck. I never used to be so whiny for long periods of time, but on the other hand I never had any life threatening diagnosis before and honestly speaking did not expect to get any at this age. I know how stupid this sounds but I did not, this is the only explanation I have. My parents do have some complaints about their health that come with age, blood pressure, joint pain, but overall are healthy (knock on wood) retired engineers in their almost 70-es. My grandparents died in their 80-es except for the parental grandmother who died two weeks after my father was born, my maternal aunt is 77, my paternal uncle died last year of colon cancer but he was my father's younger half brother, we only shared genes through my paternal grandfather. I was not worried before, stupid I know. But I still was cautious, I insisted on the mammograms and appointments but was not prepared for it. But I do not think anyone can be.
I have greatest respect for people who fight multiple cancers, for you in particular, because I do not know so many. You are amazing and how you have handled it so far is amazing, to be able to, as you say, face it, is worth so much for anyone who has this disease because I want to be able to pull in all resources just to stay myself and do not instead lose myself in this situation. And I hope my eldest daughter will learn how to handle the tough situations in life, it is the young one my heart breaks for, she is too young and is just a child, she does not have the same understanding, she just gets scared and unprotected. I hate that we are going through it all when she is still so young, but there is nothing we can do about it but try our best and remain calm for her sake and try to maintain the same routine for her. I know the protocol, and it looks good on paper so to speak, but in reality I am losing it at least once per day as I said. This is something I have to work on, there is no other way. And I honestly do not like to compare someone else's cancer to my own, it is still what it is, and it cannot be much better than any other's even if it is different, it is still cancer. I want instead to hear it is 100% survival and no risk after treatment. We all do. Thank you once again, as I said, when I feel so desperate I do not even expect people to read or respond much, it can feel better to pour it all out. May we all live long. Hugs, Cherry
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coachvicky, T-Sue, thank you! And the famous BC I mentioned is btw known as somewhat disabled when it comes to social competence, now when I spoke to some of her colleagues they all agree on that. It was unfortunate I was sent to her, she is a great specialist but it feels that she gets amazed and uncomfortable at every question. When my husband asked her whether the surgeon who was scheduled to perform my surgery was good, her answer was: what do you mean? She was one of MY students! One should see her face when she said it. Some doctors treat the disease and forget about a person who has it and is scared to death during the treatment. Ok, enough with complaints, but thank you for taking it. And my husband was also impressed with statistics I show to him from that article Lita sent to me. I am not sure about antidepressants, but this is not time to turn down the opportunity of getting better. If it gets worse, I will reconsider, especially after the treatment, when people say anxiety may get worse. Hugs, Cherry
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HapB, my cat is staring at me at this very moment, she is my most devoted audience when I am alone or when it gets late like right now, it is half past 11 here. I think I will put a picture of her as my avatar. I already had my first Taxol and Herceptin, thank you for your prayers and it is scientifically proved that the cats have soothing effect on people who experience depression, I know my has. She also snores and is the size of a smaller seal. Cherry
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As I have mentioned I am reading this thread from the beginning. Back in 2011 one of the users Chrestean posted the following:
There are some really good people in the world. I want to let everyone know. There is a website that offers a free scarf for people who have hair loss from illness. A few weeks ago I ordered a scarf and today it came in the mail, beautifully wrapped, along with a get well card personally signed by about 20 people. I was touched. The scarf is beautiful....gorgeous infact. I will be proud to wear it. Here is the link for anyone who is interested. What an amazing company and compassionate people.
http://www.franceluxe.com/i/goodwishesscarves/Good...
I decided to try this link and it worked, I have now sent a request for a scarf with the good wishes, I will only have to pay for the shipping costs because I am outside the US, for any of you who wants it, it will be delivered free of charge
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Cherry, I'm speaking from personal experience here - you need to hit this emotional distress now, with the biggest bat you can handle. Please talk to a doctor you trust about what you're going through and ask about an antidepressant. You're going through so much and as time goes on the assault on your body from the chemo etc. won't make it any easier, I would imagine. I don't mean to be so pushy but what you've described I've felt myself at another crisis in my life and trying to tough it out just meant it took longer to get my head straight. Think of it as vitamins for the brain is how my doctor described it.
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Lita, I have been prescribed an antidepressant a year ago after we have decided to stop trying to get another child and my GP decided that I was in the bad shape after my last miscarriage. I bought it, came home and decided to try. As always with any prescribed drug, and I have not been prescribed many before except for probably antibiotics, I went through the SE although I already knew they would be awful, bacause I once helped people to translate the SE of a similar drug. But this one even has mentioned cancer as a possible SE along with some other dreadful SEs. My doctor called to ask me whether I have started and how I am doing and I told her I could not literally put it in my mouth and I did not. In case I had you know I would have blamed it for my bc. I did the same with the birth control pills, read about possible bc in their SE and decided not to take them and still ended up with the bc. Now the councellour I saw yesterday told me that they will be willing to help and I told her I will reconsider but as I know antidepressants are tough during first weeks and I have started my treatment. I want be able to tell apart all SE. I was though in therapy for six months until January and it helped me a lot, so they will be arranging it at the clinic and if it will not help I will give the antidepressants a try. Cherry
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This is what I dislike about studies and their interpretations:
From the study Adjuvant Pertuzumab and Tastuzumab in Early HER2-Positive Breast Cancer as reported in the July 2017 NEJM: (Italics mine.)
"In the cohort of patients with node-positive disease, the 3-year rate of invasive-disease–free survival was 92.0% in the pertuzumab group, as compared with 90.2% in the placebo group (hazard ratio for an invasive-disease event, 0.77; 95% CI, 0.62 to 0.96; P=0.02). In the cohort of patients with node-negative disease, the 3-year rate of invasive-disease–free survival was 97.5% in the pertuzumab group and 98.4% in the placebo group (hazard ratio for an invasive-disease event, 1.13; 95% CI, 0.68 to 1.86; P=0.64). Heart failure, cardiac death, and cardiac dysfunction were infrequent in both treatment groups. Diarrhea of grade 3 or higher occurred almost exclusively during chemotherapy and was more frequent with pertuzumab than with placebo (9.8% vs. 3.7%).
CONCLUSIONS
Pertuzumab significantly improved the rates of invasive-disease–free survival among patients with HER2-positive, operable breast cancer when it was added to trastuzumab and chemotherapy. Diarrhea was more common with pertuzumab than with placebo. (Funded by F. Hoffmann–La Roche/Genentech; APHINITY ClinicalTrials.gov number, NCT01358877.)"
I find the conclusion misleading. Yes, the majority (63%) had node-positive disease but that means 37% did not and the 37% who were lymph node negative did better with a placebo than with the addition of Pertuzumab. I'm not sure if statistical significance was achieved in relation to the placebo group but they clearly had different outcomes.
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