HER2 Positive-anyone 10 years out?
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Two years and one month out from diagnosis, and feeling better every day. Body aches have diminshed, skin looks good, hair is coming back thick and strong (albeit gray....). Major side effect is gynae. I'm assuming that that's caused by the tamoxifen. On the tamox, my onc told me the other day "just try to stay on it for another year".... so I think that oncs recognise the high drop out rate among hormonal users and are trying to use another tact - a more pragmatic one.
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Hi. I don't post here often, but stop in every now and again to offer hope.
I was 45 when diagnosed in 2008, HER2+++ 2 positive nodes. Small skin recurrence after two years. Back into treatment in 2010, but doing just fine now. I am still on Herceptin and I probably always will be on Herceptin. Doesn't bother me other than having to go every three weeks and sit for an hour or so while they infuse. I developed lymphedema in my arm and thought it was the end of the world...not so. I have the help of a great therapist who taught me how to massage and wear compression sleeves.
My oldest was 12 when I was diagnosed. He just turned 17 and we are getting ready for him to go away to college. My youngest was 6 and he is turning 11 next month and getting ready for middle school. My faith is stronger than ever. Friends have come into my life, and others have left. My marriage is stronger than ever and I am happy....truly happy.
Hang in there ladies.....this too shall pass. I am certain that there must be many more Her2+ survivors out there, but they are busy living their lives.....you will be too!!!
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Thanks so much for stopping by to make this post and give us hope, my2boys!
And congratulations!
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You are welcome Lee A. My diagnosis is almost the same as yours. With the recurrence, I became ER+ AND HER2+++. I was also a grade 3 and staged at 2B. I take daily aromasin. Not a big deal at all. This combined with the herceptin are good follow-up treatments.
Keep a happy thought. I got a bit nervous and scared in those first months, but I can honestly say that there are more days that I don't even think about cancer at all.....and very few where I worry.
Stay strong!
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my2boys - did you have herceptin the first time around?
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my2boys,
Thanks for sharing your story and your wonderful perspective.
Wishing you many happy, healthy years! With all the wonderful ups and downs of raising boys. They are very luck to have you as their mom.
Ann
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Hi Linda...yes I did have herceptin and the recurrence happened after I finished my year. The surgeon promptly removed it and I went back into treatment with Tykerb, radiation and of course more chemo and herceptin. After finishing and getting a good scan, they continued with herceptin and I have been on it for 2-1/2 years now, and doing just fine. I guess at some point they will tell me I've had enough herceptin, but hopefully that won't be anytime soon.
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Thank you Ann. I wish the same for you. I see that you are a long time survivor as well. Congratulations and God Bless.0 -
I am almost 5 years out now. I still panic every 6 months when I go for screening tests. I just had an MRI yesterday and will likley not get results until Monday next week. I am followed every six months - alternating mammograms and MRIs. So far, all my tests have come back clean (but that doesn't stop the anxiety). I have a full, active lifestyle and, for 50 weeks out of the year, do not worry much. My husband pointed out that I talk about having breast pain, etc. about a week before each test - so I guess my mind is in full gear from a fear perspective. I was on Herceptin for a year, with no really bad effects - but I was happy to be off it and resume exercise and sports. Thank you to all who let us know that life can be good (and long) post BC and that recurrences are NOT inevitable!
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8 years on the 23rd February - wow!!! Chemo, herceptin (1 year) & Arimidex 6 1/2 years
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CONGRATULATIONS!!
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Whoo-hoo!!! Huge congrats!!!! That is awesome.
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Hi All,
I'm 62 now, 11 years older, with some natural aging and a LOT of expedited aging of all kinds due to treatment. Most of the responses here have been from those who much more recently completed treatment. As a triple positive, the likelihood that I received any benefit from chemo is negligible. The accumulated deterioration is not. Best wishes to you all.
A.A.
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I'm triple postive, did chemo, herceptin just shy of 2 years on Anastrozole with 3 more to go. I had a different experience than AlaskaAngel. The only left over SE I have from chemo is slight numb left heel that only acts up when it's humid, rainy or snow. It doesn't hurt though. My nails are bit messed up because I got that rare SE from Taxotere but it doesn't hurt. Put nail polish on and they really look great. I look pretty good and still look much younger than my age.
I will be 3 years from diagnosis this summer. I'm sure after a full decade I will look older but that's to be expected even if I don't do treatment.
Alaska sorry you had such a hard time with chemo.
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Happy Valentine's Day to you, Lago, and many more. Accelerated or otherwise, aging is a challenge. When I chose to do chemo, after I was done I too thought I would age fairly normally -- after all, my hair came back thick and curly, and I was just so glad to be DONE with chemo after 6 treatments! However, the truth matters, and because there apparently aren't many old-timers who do post here in comparison to those who are within 5 years out from treatment, I tell it like it is for me, in all fairness to those who want to make their decisions about treatment based on a breadth and depth of factual long-term experience.
But the ones with bc who are very young have an even greater challenge to deal with, and more difficult choices to make.
A.A.
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AA that is your experience and I don't doubt it's true but then I met Marybe (she passed this fall). She was a 21 year survivor, 16 years with mets. She had been through many rounds of chemo. Last time I saw her was last February. She didn't look beyond her years, actually she looked younger than a lot of women her age. Everyone ages differently, chemo or no chemo. Everyone's experience on chemo is different too. Some of your aging might just be in your DNA and not from chemo
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Lago,
It is good to know that you have met one person who looks young after many rounds of chemo.
I don't look older than my age. At my age, I still have long hair, although it is thinner and much drier, with more gray in it. But my physical capabilities are those of someone much older than my age, despite maintaining a particularly healthy lifestyle and diet. When in the midst of choosing treatments, it is hard to make an honest "guess" about the long-term effects. It is hard to be honest with ourselves about it, particularly since the medical profession is mostly ignorant and in denial about the many effects of treatment. For example, at the time I chose treatment, none of the medical providers had the wherewithal to admit that there was such a thing as chemobrain, although at that time they most definitely had decades of direct experience with patients who had done chemotherapy. It just didn't exist for them, and patients were encouraged to believe that if providers didn't know about it, then it probably wasn't much of a problem for patients. Thankfully as time went by, some more conscientious health providers investigated the problem and brought it out into daylight for those who had been suffering and were being denied acknowledgement that chemo was the basis for the problem. Ditto for the denial of long-term sexual effects and suffering that is now considered to be a very common effect.
As patients, it is hard to accept the likelihood that such treatments have serious long-term effects, and that is understandable. I hope open honesty about those effects is helpful to those who are considering the total picture, despite the pervasive denial about long-term consequences.
A.A.
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AA myabe we should take this discussion on another thread. Again this is your experience and mine is quite different. Chemobrain is a SE and for those who do get it as many as 1/2 have it resolved in a year. Sexual SE can be an issue too but in my case after a few months of suggestions from my NP all is resolved. But the bottom line is I rather have my SE from chemo and be alive then the alternative. Maybe the fact that you were a stage I makes you feel that it wasn't worth it but HER2+ is a very aggressive form of breast cancer. With chemo/herceptin the prognosis is so much better than it was before… and herceptin works better with chemo.
This thread is not about SE from chemo. It's about those who are HER2+ and surviving. Maybe you should start a thread about long term SE from chemo. That would be a good place to warn folks. Many of us come here after treatment but still in the pre 5 years to see that 10+ years is possible. We already know what our SE are.
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Lago, this thread is "for those who are HER2 positive and surviving". I welcome your perspective, and wouldn't limit the participation or viewpoint of others who are HER2 and surviving, whether their perspective and experience is the same as yours or the same as mine, or different from either of us.
AlaskaAngel
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But you are posting a bit off topic. This isn't about treatment or the negatives. This is supposed to be a positive thread about survival.
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I agree with lago that the issues raised by AA would be better placed in a thread where they could reach the audience for whom they're intended.
AA, very glad to hear you have so many years of survivorship, hard won for sure.
It's always good to hear from long-term survivors of this disease. Good health to us all!
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Though AA has raised an important issue, one definitely worth discussing at length in a topic dedicated to that purpose, I do believe it is important to return to the spirit of this particular thread. TuckerTwo, the woman who initiated this thread, was specifically seeking word from HER2 survivors 10+ years out in order to gain "SOME hope that this thing can be beat." I interpret the tone of that request as one focused upon celebration. She is asking, in my opinion, long-term survivors to share their story of hope, so that those of us whose vision has been dimmed by the shadow of a recent diagnosis may have something to look forward to. We need sacred space for that celebration, a place to view the positive guide posts along the way, move forward, and acknowledge what's possible (which is not one and the same as creating a space inflated by denial). There is plenty of room among these discussions boards for the cold hard knocks of reality. But I believe the intent of this thread is to carve out and set aside a space that gives survivors a margin of ease, of hope--you know, a brief respite from the awful grind and fearful contractions of BC.
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I have taken many screenshots of the posts on this thread and saved them in my FEEL GOOD file on my desktop. And yep, I've gone back and looked at them again along the way.
Given the aggressiveness of my tumor I really didn't have a choice when it came to chemotherapy. I've come to accept it as part of this process. I'm not jumping for joy about any of it but the one thing I can hold onto is just that - my joy. Sometimes it feels like cancer is trying to get the best of me and steal my joy but threads like this remind me that others have gone before me and blazed the trail - and were kind enough to relay their stories for those of us grappling with diagnosis.
Thanks to all who have shared along the way.
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These are all good comments. This is a thread that focuses solely on hope for the perfect outcome, with only minimal and temporary initial hurdles to overcome -- and not about the realities of longterm survival.
I think my post about being aware of the realities comes from a different place. For me (as a stage 1 HER2 positive) I never felt threatened in the least by the cancer itself, whereas it can be a very real threat for others, to the point where acknowledging reality is painful and intrusive.
A.A.
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not at 10 yrs yet, but getting close...diagnosed 3+ in 2005, did a year of herceptin and now doing great heading into year 8!
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Patrish,
Thats great...0 -
Alaska Angel is a 10 year survivor!!!And yes, has had some se she wants to mention. I too have se, but am so happy to be here 7 1/2 years later that I accept what I have to deal with.
My life is full and rich. My kids have all finished high school and on their way to good things. I have enjoyed many hikes, great trips, new friendships, continuation of my career...since my diagnosis.
I bet I will be posting my 10 year note in a couple of years...and can't wait to do it.
Newbies...do what you can to treat your cancer..life goes on.
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Patrish and maryannecb So excited for the both of you. Keep enjoying life!
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I can't wait till I can come back to this thread and post, "I'm at 10 years!" (I'm only at 3) but I love hearing all your hopeful stories of being cancer-free long term. Continue posting them, please! Congrats!
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I, like AlaskaAngel, have been left with a lot of residual side effects, and quality of life probably should be a consideration when choosing treatment. But unlike AA, my risk of recurrence was very high, and I've decided the benefits of treatment (including ongoing AI's) far out weigh the discomfort of the residual side effects, at least for now. I'm planning on making it to the 10 year mark too, only a little over 7 to go.
I love hearing about those still going strong, or even not so strong.
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I too like reading all the stories and accept that not everyone is going to have a "sunshine and roses" attitude to what they've been through...
Keep all the stories coming!
Jenn0
