TRIPLE POSITIVE GROUP
Comments
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JOANWILL and kdtheatre:
Re: "And the deepest abyss of BC is HER2." Ummm..... that may have been the case before Herceptin and Perjeta, but targeted therapy has really leveled the BC playing field. Now survival rates for HER2+ cancer patients are about the same as those of patients with the most common form of breast cancer (ER+PR+HER2-). So, kdtheatre, you have a very good chance of being here for 10, 20, and 30 years more.
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kdtheater - there are many 10+ year survivors on this site - and a lot of us actively posting on this thread that are at least 5+ years. Here is some info that should make you feel better. Keep in mind that early stage means stages I-IIIA for purposes of this info - so an assortment of nodal status and tumor size, and that there are many other factors that may influence OS and DFS:
http://www.breastcancer.org/research-news/herceptin-offers-long-lasting-benefits
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kdtheatre - I am strongly ER+(95%), and also PR+ plus HER2+ . I was not able to continue the targeted therapy of Herceptin due to heart failure after 6 infusions of it. Like you, I found it very disconcerting to read that HER2+ was a death sentence before Herceptin came on the market. WHAT ABOUT ME!!! I've given up the worry to a higher power and have moved on. What will be, will be. Hope you can find inner peace.
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Hi ladies! I'm scheduled to have my last Herceptin infusion in 3 weeks (yay!) and am contemplating having my port removed.
I'd planned on leaving my port in for ~2 years following cessation of treatmentbecause of my high recurrence rate, but my MO told me that I'd likely only have hormonal therapy for stage IV. I imagine I'd also start Herceptin again.
My question is: how often are Herceptin infusions for stage IV patients?
I could tolerate the occasional IV, but I wouldn't want it weekly, for instance. Thanks for any help!
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Gee, JenPam, maybe you'd be better off asking on the Stage IV boards. I do know that some Stage IV ladies do go back to Herceptin/Perjeta at some point. As someone who was diagnosed at Stage IIIA, I have kept my port for the time being. I'm doing ovulation suppression (Zoladex) + AI (Aromasin), so it's no problem getting my port flushed regularly. But, I have no idea what my MO's strategy would be for mets. Best wishes!
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specialk- what is OS & DFS?
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Thanks, Elaine. I don't want to go on the stage IV boards out of respect for their wishes to keep that area for stage IV lifers only.
How often are you having your port flushed?
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Well, at first, the nurses were willing to flush my port 6 -- 8 weeks; so I had my port flushed every other visit (8 weeks). But, more recently, my MO wants my port flushed every month. No biggie; I'm usually getting my Zoladex shots that same visit.
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kdtheatre - OS = overall survival, DFS = disease free survival
Jenpam - I also still have my port, it is flushed every six weeks. My understanding on the dosing of Herceptin for mets is a loading dose, followed by weekly smaller doses
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Joanwill55 - you are lucky it was caught early stage I with no lymph node involvement and clean margins. I'm 45 andhave stage IIA with 1 positive node. I underwent a BMX and I'm now receiving chemo. I will also have radiation and hormonal therapy. My diagnosis is triple positive. I am thankful that they have Herceptin to treat ladies that are HER2+. They also have perjeta and we are lucky that treatment for us had come so far. I think your statement the deepest abyss of BC is HER2. Is it right? Do you know anyone with HER2+ who survived cancer more than 10 years was a reflection of your own fears and not meant to scare others. I think it will help to talk to your MO so they can help you understand your diagnosis and prognosis. If you are not comfortable with that MO find one that fits you. I think the 10 year survival rate for HER2+ breast cancer is around 84%. I think that's a pretty good number and they are developing new treatments such as ATEMPT ( trial right now ) to increase survival rates. We can also help our outcomes by diet, exercise and reducing stress. Be gentle on yourself, try to stay off the internet - it can be overwhelming and frightening! This site has loads of good info. Try and take some time for yourself to relax and do things you enjoy.
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Kdtheater...I am also stage 1a, no nodes, clean margins, high grade dcis and IDC with comedonecrosis. My doctors say my prognosis is excellent. No one has ever mentioned ten years to me...ever. hugs...
Pamela
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I was stage IIA multifocal, high grade, no nodes, no LVI, and clean margins on the IDC (close margins on the DCIS, so we did rads).
My MO said from the outset that we're going for a cure: otherwise, surgery would have been it, given that we got it all surgically. Of course we won't know for sure unless and until something else takes me out, but that was the plan from the get-go. The prognosis is good (as others have said, too!).
The ten year thing is crap. Our stats, first of all, are just stats--any one of us is either going to have a recurrence or not, and there's no in between. Secondly, those stats have started to look a whole lot better in the last ten years. . . . So, while I resist the urge to be Pollyanna-ish about the whole thing, I think that cautious optimism is warranted.
I saw my RO this morning, and I'm still NED. He told me to go enjoy the nice day and live my life, which is solid advice!
Other solid advice: stay away from Google. I say this as one who knows.
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KateB79
Well put
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i was speaking with a friend whose cancer has come back after 18 years, she is now advanced ti bones and liver, but she eent to Dana Farber and has been put on a hormonal chemo drug pill, they are thinking more in these terms now than chemo, especially with triple +. She is not so scared, her MO is a scientist and reassures her that knowing what they know now, chemo is a last resort. She is keeping me posted and she is in met group, but very upbeat today!
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5 year check up was this morning! Will hit officially on Monday. Woo hoo!
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Meister-congrats!
JenPam-while I can't answer your question, my new oncologist (first one passed away) said he has a woman who had mets to her liver. Has been receiving herceptin since it was approved, or maybe before even, but is stable and will continue to receive herceptin until something changes.
Jerseygirl-I turned 60 last December. While I don't want a recurrence, if it takes 18 years, I can live with that lol.
November will mark 6 years since my bad mammorgram. I see my Onc in October to discuss the Arimidex continuation issue. Bone density test next week.
I have been a total sluf and my body shows it. It is time to get back into some serious exercise.
I am trying to live my life and do enjoy every day, but I would enjoy it more if I could get a pet scan every year, lol
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Hi ladies - just checking back in. Haven't chatted in awhile. The issue in my armpit is still there. I see my MO on Monday - it will be the first time she's seen it. I have another ultrasound and a visit with the Breast Surgeon's office scheduled for October 13th. I"m sure it's nothing - but it's been there since June..why isn't it going away? :-(
Hugs to all! WIll update after Monday's MO appointment.
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fluffqueen -- I'm right there with you with needing to exercise! I was so good during the summer, when I swam every day. But, now I'm back to work and the kids are back at school, so I just don't seem to have time.
Tresjoli -- hope it's nothing, but you're wise to have it checked out! Good luck!
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Elaine, I would like to blame it on too busy, but as a realtor I have a pretty flexible schedule. I just didn't feel like it. I did a fair amount of walking consistently, but actual work outs were few and far between. My waist and weight show it too. I have cut back on white bread and sugar, and am going to keep working on it.
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fluffqueen,
As a college professor, I have a very flexible schedule, too. I, too, just don't feel like exercising, and use my work/kids as an excuse! Sad, but true. I did move my classes further from my office, so I do more walking at work, but let's face it....my exercise bike is getting dusty!
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only exercise for me is yoga once a week and walking almost daily for about a mile. Otherwise sedentary is my middle name when not house cleaning, shippong, or running errands. I just am not motivated as i once was. Of course the summer has been extremely hot. Any motivators out there?
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Just wanted to say hi. Been busy with 2 jobs, double shifts and only 2 days off this month. Things will be settling down next week. No more double shifts and will have 1 day off a week. 52+ hours on your feet is too much for me.
Exercise has been a bit challenging but I do walk to one job and I am moving a lot in my job. Just need something to get the heart rate up. Back on the power walk next week
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I'm also a college professor with a flexible (well, relatively) schedule. I try to walk every day, even if it's just a couple of miles, and I go to an exercise class 2-3 times a week at my local YMCA. Honestly, I think I'm in better cardiovascular shape than I ever have been, thanks to the exercise class, but I do miss weightlifting. One of my goals is to get back into lifting, though my muscles don't recover in quite the way they used to (thanks, menopause at 37!).
Here's the thing: exercise is more than physical fitness. It really, really, really boosts mood in most people; I read a study recently that suggests it's as effective as SSRIs for a lot of people. Given that I'm about to go back on an SSRI myself for cancer-related PTSD and anxiety, I might not be the best motivator in the world, but I can say that I feel a whole lot better on days when I've done some moving around.
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It has been some time since I posted as I seem to have less free time now that I am not hanging out in the doctors' offices every week. I have a question for all of those on Arimidex. I was initially on Tamoxifen but then switched after a year when my hormone tests said I was in menopause My hair grew back great on Tamoxifen, but now after being on Arimidex for 6 months, my hair is really thinning. Anyone have this and switch to another medication? I believe Arimidex is more effective than Tamoxifen for those in menopause. I see the Oncologist next week so I will discuss but would like to know feedback from others before I see him. Thank you so much for reading my post and responding if you have input.
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chrissie29 my hair started to thin even before being on these drugs do to perimenopause (less estrogen). I started using generic Minoxidil. Works great. This is not uncommon on this drug. I did switch to Exemestane which initially I though was worse but then leveled out. I have friends that had the same issue and found the Minoxidil works great. I use Costco brand, men's that I use once a day. I don't like the foam and the liquid I purchase online. Really very cheap that way. You get what they call 6 months worth that lasts me a year.
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Lago The liquid is better than the foam? Is that what you get? Thanks for the info.
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Since we are talking about Aromotase inhibitors, I am due to begin my switch from Arimidex (5 years) to Tamoxifen. Of course, I read the literature on Tamoxifen and my gynecologist mentioned it too, which shows a side effect can be uterine cancer which scares me a bit since I just had a scare with thickening of my uterine. The biopsy was negative but it's scary. Seeing my oncologist next week to discuss again.
Congrats to those who have finished their 5 years.
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so my MO does not think it's cancer in my armpit. Yay! She thinks it's a cyst. She says that when I have my MRI in October, they will be imaging that area anyway, and felt it was just fine to wait til then. Works for me! I just wish the darn thing, what ever it is, would heal!!!
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Great news, Tresjoli!
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Wow, Tresjoli! That's awesome!
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