HER2 Positive-anyone 10 years out?

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.

Denny, '

congrats on the 11yrs!! That's great!

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!

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.

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.

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.

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.

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.

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 !

lkc CONGRATULATIONS ON THE BIG 10

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.

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 !

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!!!

Whoo Hoo RebzAmy!

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.