TRIPLE POSITIVE GROUP
Comments
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I read that too lago - I am pretty highly ER+ but still being HER2+ and grade 3 makes me nervous. I am going in for a checkup 11/29 and going to ask about switching to femara now. My onc eventually wants me to switch to femara and I have been period-free now for 14 months. I don't think it's coming back and I am just about 53 as of next month. The estrogen positive effects of tam on non-breast cells just make me nervous!
SpecialK - That is awful about your friend.
ricia - I am over a year out and still trying to wrap my head around this. It helps so much to have all of you to discuss things with. I can't imagine what it must have been like even 10 years ago to go through all this without such wonderful support.
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Omaz I just turned 50 2 weeks after chemo ended. But as you know my onc did test my esterdiol (sp) levels for months. I do think it's a little unusual that my onc started me on AIs but I agree with her that my period isn't coming back… not with my family history and being peri etc.0
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omaz - it was really disheartening to find out about my friend. I am not really familiar with the specifics of her BC, as far as hormone receptors, etc. She did well for so long and then had this diagnosis. They knew from the outset that this was an aggressive uterine CA but thought they had it under control. She had one of those surgeries where they open you and pour the chemo into the area, I think it is called "chemobath" and they thought it had worked. About 3 weeks before her oldest DD's wedding they found she had mets. I was in chemo at the time and she had been super supportive to me, it just made me very sad. She was scared that it was going to upset me and she kept telling me not to worry about this happening to me. I wasn't concerned about me - I was worried about her! It is a mess!
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I am 48 and just started tamoxifen. I will have to discuss this with my onc. I was premenopausal at the start of chemo and was told that is why tamoxifen for me. She did tell me about the risks of uterine cancer, but said that would be preceeded by abnormal uterine bleeding and would be caught before it turned into cancer and taken care of. Your friend's story is scarey SpecialK. That is so tragic. I like that tamoxifen won't hurt my bones. Kind of between a rock and a hard place.
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Wow. Good discussions today. SpecialK: That is awful. You know both tamoxifen and arimidex have their downsides. I'm on the arimidex because I'm past menopause but there is the worry about the bones and I already have borderline osteopenia so on top of everything else I'm on the Boniva.... so many times, I just want to stop all the Arimidex and just let nature take its course.
What is considered highly ER/PR?
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Hi all,
I am in the middle (round 4 of six on Monday), of my chemo. I am getting TCH plus Lapatanib. Over the past week, I have been having some night sweats. In retrospect, this was a symptom I experienced before being diagnosed initially. So far my response has been excellent to the chemo. The breast surgeon did an ultrasound and can no longer find any of the five small tumors I had, including the primary. I had an intra-mammary node that I swear I can feel even though she claims she didn't see it on ultrasound. My question is, has anyone ever initally done very well on chemo and had it stop working in the middle? Trying not to get too freaked, but my husband is a stage IV melanoma patient who is very well, but his is a very aggressive cancer that can change and mutate quickly and effectively. I would love any input.
Thanks,
Betsy
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Arlene - From my path report for the ER and PR staining it says: 'The proportion of stained nuclei is scored as 0 = absent staining, 1 = 1-33% of nuclei stained, 2 = 34-66% of nuclei stained and 3 = 67-100% of nuclei stained and then the 'intensity of the stain is scored as 0 = absent, 1 = weak, 2 =moderate and 3 = strong. 'A total score is obtained by the addition of the proportion and intensity score'. So they score based on the number (percent) of cells with ER and the density of the ER on the cells.
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ArleneA - I am on Femara, had a complete hysterectomy 10 years ago. I am also osteopenic and have concern about my bones.
Kay - I have been reluctant to ask my friend about whether she had any symptoms prior to her diagnosis. She was diagnosed prior to my BC diagnosis but I didn't talk to her extensively about it at the time because she was being treated and not feeling very well. After I was diagnosed I didn't want to question her too closely because I didn't want it to seem like I was grilling her. I am curious but also want to be sensitive, it was hard to know what to do. She is a nurse practitioner in women's reproductive health so she certainly was aware of the risks and signs.
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omaz - Interesting study, and my DS went to FSU! I am not sure if my poor little digestive system could handle that many prunes a day!!! Remember I had 10 days of Big D after each chemo, ha! This is exactly the point I am at now - what do I eat to maximize my health, minimize SE from drugs, minimize any effect on my ER+ - there is a lot to learn!
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SpecialK - I've manage to work in 3 prunes a day into my oatmeal.0
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omaz - before BC I was trying to get all in my house to eat those individually wrapped ones. I actually like the taste and I should try that again. I started adding a probiotic capsule with my supplements and I have to say I think it is making a difference. The head onc nurse suggested doing that. I used to have some Big D issues after Herceptin but that has gone away.
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I have a bone scan in the beginning of December as well as an echo. We shall see how well it goes. I am alson on the anastrozole. My insurance changes so much January 12. If all goes the way it should, I only have 2 appointments with the oncolcogist and 2 labs drawn. I am keeping a positive approach to this!
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SpecialK I love those individually wrapped prunes-they were a lifesaver during chemo. Now they make a sweet and healthy snack! Never in my life did I think I'd be focused on things like prunes in my early 40's:)...
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Well at least no girtles (not sure how to spell that!). I remember my grandma struggling into her girtle with the all the clips hanging down for her stockings. OMG and the full size menstrual pads! Those were awful! I'll take the prunes.
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Congrats Nora on your last Herceptin!!!!!! I must say you look fantastic, I sure wish I had a cleavage like you...... [well I used to] Some women have the option at surgery to have there new breasts put in right away, I would have had to have waited quite awhile to do that and my surgeon though that it would be better to have it done down the road. So for now I am lopsided Wish I knew then what I know now!!! Might have pushed the issue
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Just an FYI. I was slightly osteopenic before starting chemo. 1 year later I was tested (after chemo and 5 months of Anastrozole) and my bone density only went down .1% (node the decimal point). I do power walk daily but I was exercising before. The big changes I made was my D was increased even more. Added Calcium and don't drink diet soda. (I had a 1-2 can a day habit since the early 80's). Note I'm thin, white, small boned with family history of osteoporosis too.
I'm headed out to get some prunes. Not sure if I will eat 9-10 a day but I'm sure even a few will help.
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How much vitamin D do you take lago? Is it D3 that you take?
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dragonfly - those are the ones! Talking about prunes makes me feel like I am a constipated 90-year old! WTH?
lago - my MO tested my D level after chemo and mine was almost non-existent. I knew I was osteopenic already and had been taking calcium (although I was not very disciplined about it to be honest!) but no extra D, except for what was with the calcium. MO said up the Vit D so I am now behaving and taking a small bucket full of vitamins and supplements daily. I have one of those plastic daily pill holder things. It also makes me feel like a 90-year old! I don't think it is big enough to put prunes in though! I am not a diet soda girl but trying to just drink water and unsweetened iced tea. I am still trying to work out what to eat (and not eat) on a regular basis.
Nora - yay on the last Herceptin and your hair! Dragonfly and I (and LisaGH) are closing in on that last one too!
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prunes in the pill dispenser - haha!
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no way in hell i'm going to eat prunes. are you kidding me now?0
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I like prunes!
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yaya - maybe later on the prunes for you - you just finished chemo!
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that's just wrong, omaz. you like prunes? i think specialK is right ... too close to chemo for me!0
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ok wait.... why do we want prunes???? Other than the obvious...............
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I like prunes too!
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They might be better if we dipped them in chocolate!
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SpecialK The idea of putting prunes in my daily pill dispenser is hilarious!!! I actually wish I had room to do that...my Vitamin D level was also extremely low and my primary care doctor told me to take my daily multivitamin that includes D plus an additional 1000 i.u. of D3 daily. YaYa Have you tried the prunes we are talking about-sunsweet "ones"? They are really good... Come on, I know you are tempted:)
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Ahh man, prunes in dark chocolate - you know, I think I'm gonna try that.
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