HER2 Positive-anyone 10 years out?
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Margun, I took letrozole for 5 years beginning in 2008 and am 12 years NED. I was 96%ER+ PR- Her+. Yes I was somewhat achey, especially in the morning but I found once I started moving I would feel better. Also, taking extra vitamin D3 seemed to help me. For me dealing with the aches were a trade-off. I had such a small tumor, which was all removed in the biopsy, my oncologist did not recommend chemo or herceptin. They found no more cancer when they did the lumpectomy. I definitely feel letrozole helped keep me cancer free all these years.
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Sandee . Congrats for 12 years out . It is definitely small trade of for chemo and herceptin. Chemo in particular, I still have lingering side effects from chemo and I am pretty sure that my organs are aged due to it. I was triple positive but my tumor larger than yours, 1.3cm and I had some Dcis. But despite horrific chemo, I see the positive and that is being cancer free and hopefully for many years to come. I have a 18 years old and would like support him and enjoy him for many many years. See hopefully my grandkids
I am wondering what determines how long one will take letrozole. You took for just 5 years some others 10. Do you know why?
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I may have posted on here before, but I officially hit my ten year cancer free mark in July. I had all the bad prognosis factors, when I read a list in 2010. My cancer was not small, and two of my four positive lymph nodes were visibly full of cancer at surgery. I went into surgery a stage I and came out a stage IIIa.
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Yay for you! This Dec 12 will be my 19th year as a survivor of Stage 4 MBC de novo. As far as I know (until my next scan) I am NED.
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So happy to read these posts!
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happy and grateful in my 16h year!
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I was diagnosed in 2007
stage 3 er pr - her + still kicking and doing well!!!!
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Congrats to all my brave sisters for being cancer free. You are my inspiration and I am grateful you are taking time to post
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11 plus years!
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Yay for everyone!!!
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Hi all,
Just checking in. I'm 4 days away from reaching 10 years out. Can't quite believe it. May it last.
Love to all xx
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10 years this week - feel very fortunate to have had access to the treatment that allowed me to reach this milestone
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congrats to all and thank you for posting to encourage.
For Femara users- i am taking Letrozole for one year now. Some bone and muscle pain. Annoying sometimes worrisome when happens in liver area but manageable. Is the discomfort gets less or more with time.
SpecialK. Is the note 2/14 on nodrs means there where 2 positive ones?
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margun - I had bi-lateral SNB at the time of bi-lateral mastectomy. My cancer side SNB was declared clear in the operating room, but during the more extensive look at the sentinel in the lab later it was found to be positive. I had a separate surgery five weeks later and had an additional 12 nodes removed and there was quite a large positive node among them. My breast surgeon never found anything suspicious on physical exam, and ultrasound and MRI also failed to detect any issues even though the size threshold was definitely met. As much as I wish I didn’t need the additional surgery I am glad I had it otherwise that large positive node would have still been in there. Since it wasn’t known about before surgery nobody would have been monitoring it after chemo
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So thankful that you all come in and share.
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coming up on 17 years post DX! Last year had meningioma resection (brain surgery) and radiation, and recovered well from that with a few bumps after 3-4 month recovery. Now I want my reconstruction revised, because it has become more uneven over past 5 years with "good" side sagging more. I was about to do that 3 years ago when all the meningioma stuff started happening. Implants are 15 years old. I feel very out of the loop on the latest reconstruction techniques. Probably can't afford it anyhow. I'm on medicare now., with a Medicare supplement. Appearance is OK in clothes with a bra on, but I always want to look semi-"normal" without clothes too. One of those quality of life things. Hang in there everyone, keep the faith!
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soccermom--Yay for you!
I had a DMX in 2005, but lost my left implant to a staph infection. So I had to get a lat flap on that side. That side is bigger and lower than my right saline side.
So now I wear a sports bra with 2 hollow swim cups in the pockets and both sides look the same. I am too old to think about another surgery.
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margun, I have tried 3 different ones? Anastrozole, Aromasin, and now Arimidex, some people also have less side effects on name brands but all still rough for me. Maybe try the name brand Femara?
My ONC suggested Faslodex to me yesterday, so I am just starting my research. Have you asked this question in the AI general forums, as there is more discussion on AI and side effects on them?
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Thank you @Denny123- Looks like you're a long-term survivor too and one of the early Herceptin recipients. Congrats to all of us! We can do this!
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soccermom...thanks! Dec 12 will be the start of 19 years. So I will continue to hibernate since Covid19 would kill me quickly.
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It's wonderful to see all of you here. Very inspiring to us newbies like myself, not even a year out from my last Herceptin.
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to the ladies who took Letrozole. I am taking it fore a bit more than 1 year. In the beginning the bone joint paint were happening occasionally for a short period. Now they are more frequent and more aggressive. The effect is cumulative or perhaps it is due to the humid autumn? Could you share your experience with this medication? I know someone who takes it for over 3 years and has no side effects. My hope is that mine will not get worse. Th
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DebbieB. Did you had anti hormone pills? If yes, for how many years? Any side effects? My understanding is you had just ac chemio with no following Taxol? I had Ac and taxol. I guess those combined with letrozole are giving foot hand stiffness and aches
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i had done joint pain but was manageable. But a few days ago my thumb gets stack or snap to straighten. Something have to straighten my thumb with my other hand. It is trigger finger sign? It will go away by itself? I am scared because this affect my hand functions. I am taking letrozole for a bit more than a year and I hope this is not a sign that my joins will malfunction one after another. Any advice how make it better. There is anyone who's trigger finger got better over a short time?
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Margun - Yes, and No and Yes, and I posted a detailed answer on the thread you started.
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Still here almost 13 years later from a very bad prognosis. Two reoccurrences but still here! Stay positive you are your own statistic.
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lfasano44- I am glad your still here and I glad that you posted. thank-you
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ifasano..yay for you!
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Just dropping by to say that today I'm 13 years out from a diagnosis of stage I HER-2 positive breast cancer. I had a lumpectomy, 12 infusions of Taxol/ Herceptin (continuing Herceptin infusions for a year), and radiation. It was a rough year, but I've been fine since! Wishing encouragement and good health to those of you in the struggle. Stay close to those who love and support you, don't bother with negative people, and don't be too hard on yourself. Wishing you all the best.
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September-YAY for you!
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