HER2 Positive-anyone 10 years out?
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Denny congratulations on 11 years. I hope your EF recovers quickly
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Hello, all,
Posting here to encourage anyone currently in treatment and feeling overwhelmed and anxious about the future.
My good news is that last month I marked seven years since I was diagnosed and treated for HER2 positive BC. I was part of the clinical trial at Dana-Farber that looked at the use of taxol/herceptin for early-stage, node-negative HER2 positive BC. I've had clear checkups and no problems in the intervening years.
My less than good news is that I was diagnosed with Hodgkins' lymphoma in March. My oncologist assures me there's absolutely no connection between the two diagnoses. The lymphoma was discovered in the course of a routine follow-up mammogram. I'm grateful to the vigilant care I get at Dana-Farber.
So ladies--keep in mind that herceptin truly does seem to be a wonder drug, and get regular follow-up care!
And Denny, congratulations on your 11 years and good luck with your EF. Hoping it comes back up to where it needs to be.
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dear SeptemberSong - I am really sorry to hear about the Hodgkin's lymphoma. That feels so unfair. I hope that the treatment is successful and fast-acting. I was diagnosed with the identical BC as you on almost the same day In May 2008. The boards here were a life saver. Am still friends digitally with two people I met on TCH board.
For the sake of the subscribers and the original topic I report that I am doing very well. Still slightly overweight (need to keep that in perspective) from the initial chemo and then the Arimidex but after the five years on that, I am much more active and happy now. I hardly ever think about the diagnosis anymore and am not living fearfully.
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Denny, '
congrats on the 11yrs!! That's great!
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Hi ladies, I'm feeling really scared and sad. My onc held my hercrptin Wednesday bec my EF was 51% down from 64. That would have only been my 6th. So I've had 5. The 5th was H only as my chemo was stopped after 4 due to severe neuropathy. I see cardiology on Friday. I am so scared that I'll have to stop the Herceptin also. I'm ER+PR-HER2+, grade 2.
Did anyone have to have their H held due to EF dips? Onc suspects my uncontrolled BP is a factor. Are there needs to get the EF back up? I hated chemo but really wanna finish the Herceptin. Are their other drugs other than Herceptin? I've read Perjeta is for use with Herceptin or when you haven't been treated with H yet. I'm sick with fear... Crying. Thank you.
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MaryJC - I had my Herceptin held many times for a low EF. I dropped to 48%. I would be off for a while, the EF would come back up, and then I would restart. When I was coming up to the one year of Herceptin (not the full treatments, just a year date-wise), my onc sent me to the University of Michigan for a second opinion. The doc there said I could continue to stop and start up to two years. At that time, he said they really don't have any much data about how well it works with the stopping and starting but it was felt it still had benefit. I started Herceptin in December 2011, went to U of M in December 2012, and finished finally in December 2013 - Just one week over two years. My EF did return to normal after I was completely done. I ended up going every other week for a single dose and was able to just get it in. My EF did drop during this time but not as rapidly and not as much. I was terrified at the time too but so far I am doing very well - NED! Wishing you all the best!0 -
goodness I am thankful for this site. Thank you JulieLynn!!! I really appreciate you sharing. I'm learning to trust my onc. I guess I just don't like her approach to me. I think she thinks bec I worry myself to my BP soars (which btw may be the source of the EF drop) that she doesn't give me the full story. But what she doesn't get is that if she would just tell me- it's treatable or there are other options, that would relieve me. Then I wouldn't have to do so much clinical research.
Anyhoo, while I hate we have to be connected this way, I am ever-grateful for my bc sisters.
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I'm annoyed that onc doubled my bp med which is a water pill and didn't rx potassium. After Wednesday's blood work my potassium was very very low and then she gave me Rx. Had I known it would have this effect I would have told her to do an Rx
Meanwhile after a very tearful prayer this am she replies to my email saying she anticipates I'll be back on herceptin but she'll decide after next echo. I'm taking that as good news.
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MaryJC - My EF dropped to 39% after 3 months of Herceptin and never recovered. I am now 3 years out and STILL HERE!
I had permanent valve damage - I'm on heart meds, but feel good. My Onc (at Univ of Michigan) said he didn't want me to spend one minute worrying that I only had 3 months of Herceptin. So I try not to do so.
It would always be a good idea to see a good cardiologist. I am grateful for mine!!
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hi Denise and God bless you! Thank you for sharing your encouraging experience. Wowzsa and you had with Adriamycin w/Herceptin the combo that can cause permanent damage- you're a STRONG lady. Def gonna check out your blog💜! Do you do any other things like alternative, supplements, etc?
ps: I see cardiology this Friday which I'm looking forward to. Also I'm sure by now you've heard of that Finland study where the ladies were given 9 weeks H and the difference was minimal compared to those who completed a year.
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Denise, just read your most recent blog post, awesome! I sooooo relate to the power of prayer and God's Perfect Timing. I also recall teen mag. I read Right On but it also had a pen pals section. Unfortunately coming from a cop family and father was a CO didn't allow me as he believed those were all from jailbirds posing as teens. He had a point lol.What a wonderful friendship you are blessed with. Talk about friends in high places. I'm gonna PM u about something.
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Encouraged to see this thread.
I was diagnosed with HER2+ Stage 1B BC last Nov.
Done with mastectomy, Taxol+Herceptin regimen for 12 weeks and 25 radiation sessions.
Will continue Herceptin through the rest of the year.
I keep wondering about what's next. How much time do I really have?
I am 40 and have been working full time through treatment. Should I live life normally and be planning for retirement? Should I take time off and check off my bucket list now?
What questions should I be asking my doctor about survivorship? How do I reduce recurrence probability?
I've dealt with this fairly well. But now I am starting to feel a lot more uncertain.
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embee_2015 it's normal to think about "how much time" but as more time goes on you will see that no one has a crystal ball. That was true before you were diagnosed too. I mean anyone could be hit by a bus tomorrow. Here's a few speeches I've been posting for several years for everyone. Seems to help some:
SEAT BELTS:
You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.SHIT HAPPENS:
Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.WHAT IF'S
Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your MO's job to worry about those cancer "What Ifs"BTW I still haven't won the lottery
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I had a mastectomy and reconstruction April 27th. My two women surgeons were excellent. Diagnose: Stage 1A, HER2 borderline and FISH 5. The oncologist recommended the standard 3 months of Taxol and 10months of Herceptin. I told him no way! I feel absolutely no need to poison my body with these toxic chemicals with this diagnosis. I do not see, from what I have learned so far, that there are any statistically proven, significant benefits to this regime and there are plenty of horrible side effects. I have changed my diet significantly and am taking supplements (including mushrooms-Host Defense Turkey Tail and Mycobotonaicals Woman) doing acupuncture and managing stress better than ever before. I feel the cancer is gone and have no fears of a recurrence but am dedicating myself to a year of super healthy living. For me with Stage 1A this is an incomparably better choice. I found the oncologist be more fear inducing than the diagnosis of cancer.
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CAHarp, first, welcome to Breastcancer.org, and second, thanks for sharing your lifestyle/treatment decisions, and experiences. We appreciate hearing this!
Gentle hugs to All!
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I never think about how long I have. My husband seven years ago was diagnosed with Pancreatic Cancer and died in 5 months. After that I live every day and have fun, do what I want to do, and am happy everyday! Everyday is a gift from God and I thank Him every day and then go and enjoy the day. Hope this helps those who wonder how long they have.
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CAHarp - I don't post much on these threads, but read them often and saw yours today. I had a similar diagnosis and felt the same way when the Taxol/Herceptin treatment was recommended to me. When I sought a second opinion, the recommendation was the same since it is standard of care. In the end, I decided to do the year of Herceptin. My MO was comfortable with my decision (my second MO, not my first one). The side effects were minimal (runny nose) and no heart issues. It gave me peace of mind to do something, but avoid the toxicities of chemo (I have a comorbidity). I also try to live a healthy life style of eating right, exercise, etc.
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my post from last yr;
"Hey Ladies. I am now TEN YEARS out from a nasty a** BC, stage IIIC 12 nodes positive, er/pr negative and NO clear margins after my last surgery!!!
Grateful, beyond words...Hey Ladies. I am now TEN YEARS out from a nasty a** BC, stage IIIC 12 nodes positive, er/pr negative and NO clear margins after my last surgery!!"
another year has rolled by. now it's eleven years and well. hope , faith and love !
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Denny, IKC, Denise-G, Lago and all the rest, thank you for taking your time to support all who are on these boards. We have to move forward in hope. Your experiences are so inspiring to us newbies. I can do this
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Somewhere I posted how I am a 14 year survivor of Stage 4 BC. I am a miracle, but have been fighting a recurrence for 5 years in my chest and neck.
But at Stage 1 for you, I would honestly give you another 100 years or so.
Denise
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I'm 9 1/2 years out. Been on Herceptin the whole time and have been NED since the end of chemo in 2007. I am extremely fortunate and grateful. In January, I will be 10 years out.
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Yay cnanthia! May you stay in remission forever! Herceptin gave me 6 years of remission.
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Hi, how are you doing now? I'm diagnosed triple positive and just completed 6 rounds of TCH and needs to carry on with Herceptin for another 12 cycles. I had my menopause end of last year, Dec'15 and my oncology insisted that I need to take tamoxifen for at least 2 years before I changed to letrozole which I heard is more effective. I do not want to take tamoxifen as it may cause uterus cancer. Are you still taking tamoxifen or other hormone therapy? Hope you can share with me your journey and hope you are doing fine these years. Thanks !
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Gbyever I went through chemopause at age 49. Given when my sister and mom when through menopause my oncologist did start me on Anastrozole and tested me for 5 months to be sure I stayed in menopause. The other option is going on a drug to suppress your ovaries so you can take an AI. But if you had your last period in December 2015 then December 2016 you should be able to switch to an AI. Not sure why you have to wait the 2 years.
Also note the risk of ovarian cancer is very very low on Tamoxifen. And they will be watching. If there's a problem they will catch it early and remove the Uterus… That's the worse case scenario.
I'm almost 6 years NED, triple positive.
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Just wanted to revive this thread. Four years for me NED of HER2! (off of herceptin for approx 3 yrs)
Just diagnosed with different BC in other breast... ER+/PR+ -- but so thankful it didn't come back HER2+
So lets hear from those 10+ folks!!!
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Hi everybody,
Diagnosed HER2 +++ in June 2007 - so roll on June 2017!
6Cats sorry about your new diagnosis but good about it not being HER2+
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Whoo Hoo RebzAmy!
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Thank you all for posting. I am just a few years out now and really need to hear the success stories some evenings when the fears creep back in. I always need to be very brave for everyone in my life. But it is scary. Good luck to everyone on here.
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Hi, my friend was dx IDC with HER2 positive and 2 nodes involved in 2009. Now it's been 8 years and she is doing well. Her doctor said she could say good bye to BC.
I will give you an update 2 years later.
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