Still in remission-Thanks to Herceptin!!

Denny123

I have just picked up my CT scan report and I am still in remission after 5 years!  Woo Hoo!

By the time my bi-lat bc was found (despite yearly mammos), my bc had already spread to my liver.  Had Gemzar and Herceptin which put me in remission after 9 months.

Have continued on Herceptin every 3 weeks for 5 1/2 years and my heart EF is still fine and I am still in remission!

I will be on Herceptin for life.

Denise

Jaimieh

I hope you continue to dance with NED

TenderIsOurMight

Great news Denise. Let's hope the casted net of personalized medicine discoveries will widen the path for many more breast cancer patients to join you to long remission.

Tender

DianaT

great news Denise!! I pray for the same!!

orange1

Just so you know the possibilities - I have a former colleague at work who has been on Herceptin for 11 years and still doing excellent.

Annaanne

Great to hear, Denny.  Wishing you many many more...

Annaanne 

Chelee

Hi Denise,  I haven't logged in for a while but couldn't help myself when I read your post.  I just wanted to say BIG CONGRATULATIONS on being 5 yrs out and NED.   Your post is so inspirational to me and I'm sure it is to the others here.  One can never have enough hope to hang on too.  I know of some other woman that have been on herceptin for years and are doing GREAT like you.    Here's to another 50 or so years of ned coming your way. 

Chelee

Maeve

How WONDERFUL!!!!   I am thrilled that Herceptin is doing it's job, long may it continue!  

phoenixsmom

That is so great to hear!  I'm sorry to ask, but they want to put me on herceptin too, although I've never heard of staying on it so long.  I thought it was only for 1 year?

Anonymous

WOW!!!  This is wonderful!  You're reminding me that the drippy nose and acne are actually WORTH it!  Congratulations and lots of love; I am so happy for you! 

  

maryannecb

Always good to hear from you Denny.

Denny123

phoenixsmom,

Herceptin is usually given for only a year, unless one is Stage 4 and if it has worked to reduce the tumors.

When I was put on a Clinical trail Phase 2 of Gemzar and Herceptin 6 years ago, it was very new. 

But in that period of time, Herceptin was found to work amazingly well.  That is why it is now offered to so many women for a year.  The fact that it has kept my very aggresive liver mets in remission, just shows how good it is.

No acne or runny nose here, luckily.....

 Denise

Erica2

Denny,

Maybe not.  I found a link that indicates they are very close to coming up with a vaccine for HER/2+ breast cancer.  Does anyone else know about this?  Here is the link:  http://www.medicalnewstoday.com/articles/121459.php

I am going to ask my oncologist on my next visit on July 6th.

 Hugs and best wishes to all,

Erica 

LJ13-2

You oncologist is going to tell you that this is lab research that is at least a decade away from any possible use in humans.

orange1

I know the vaccine showed excellent results in an early human trial.  I believe they are developing 1st for Her2+ who are not eligable for Herceptin (2+ by IHC, but FISH- aka low protein expressors).   A retrospective look at some studies show these women may benefit from Herceptin, but are not eligable for Herceptin.  I am sure the company is going for  this population 1st because its a potentially a quick way to approval.  No women that is Her2 3+ or Fish+ will agree not to get Herceptin, so they have to test the vaccine in women that are not eligble for H.  They don't test with H because H is effective enough that it will tend to mask any positive effects of the vaccine.  It would take a massive clinical trial to tease out the effect (very expensive).  However, it the vaccine shows effectiveness in Her2 2+, they will get approval and with income coming in from that patient population, start testing it in Her2 3+ and Fish+.

Of course if effective for Her2 IHC 2+, then we'll all be figuring out a way to get it off-label.

hollyann

From what I understand this vaccine is now in Phase 3 of the clinical trial and should be going into mainstream in about 2 more years.........

Jaimieh

hollyann~ My oncologist said the same thing.  There are also additional trial in Washington and at Walter Reed Medical Center (my onc. wants to help me get into this one).  

Estepp

Girls.. I wanted to add...

my dh met up with an oncologist at his work. She is NOT working with me.

He told her about my story... Her2+... chemo.. surgery// rads... blah blah blah.

She told my dh that if I ( and ladies like me) get past two years... her world of Oncology sees us as over it.. over the cancer hump. WOW! She told him that our Onco's will not really tell us this.. as it could set us up.. but for that majority of Her2 gals today.. with Herceptin.. after two yrs from dx.. we are really in the safe

I just wanted to share this. My onco told me 5 yrs... but this client of my hubbies has no ties legally to us.. so.. I just wanted to share what she said.

Gods Love!

Laura

orange1

Estep - Wow!  Thats great to hear. 

Thanks so much for posting.  I'll have to makr this one as a favorite to refer back to during my next anxious period.

Jaimieh - Are you Fish positive or IHC 3+?  Do you know what phase the trial is in that your onc suggested?  Good luck with it and please keep us posted.

mmm5

Agree with Estepp's comments check out the Her2 joint analysis, it really shows the curve leveling off after 3 years, most all recurrances happening before that. Just have to make it to that point, prayers for all of us!!!!

lexislove

Thanks Laura for that!!!

I needed to hear it. I have my 3 month check tomorrow and I can't sleep! Just want this all over with. In 78 days, I will celebrate that 2 year mark. I have the joint analysis saved to my favorites and i do keep referring to them when Im having anxiety times *thanks again orange1*

marejo

I was dx in June of 2005 and was staged at 2B.  I have just reached my 4 year mark since my diagnosis, which was June 24, 2005.  I am NED, healthy and feeling great. 

Keep on keepin' on ladies.........Praise God.

Mary Jo

OtraVez

My onc told me the same thing last week - I'm at the three year mark, and he made sure that I understood how signifiant (his word, repeated frequently) 3 years is.  

ejlj

congrats denise on being ned on herceptin and thanks to all the wonderful women who shared their positive information on her2 stats.  Made me smile-thanks! 

trk_koa

My radiation onc told me similarly that I should be celebrating since I have surpassed the three year mark. My last med onc appointment in March, he let me stretch out appointments with him to every six months. He said it was because all my tests have been clear of cancer for three years.

*smiles*

orange1

Congrats to all you ladies who have reached the 3 year mark.  I'm so happy for you.

Lexislove - how did it go today?

lexislove

Thanks for askin about me Orange1...

It went well. My onc just said that I was looking good, and asked how I was feeling. I said I am good when I don't have to see him..lol. He laughed and understood. He wasn't even going to do an exam, I asked if he could check a "bump" that has been there for months and has not changed in size. He says it's in the skin and most likely a gland or duct that could be blocked.

I asked was he sure?! He laughed again and said yes it's not BC. My time with him lasted maybe 10 minutes and then I had my Zometa and Lupron. I am feeling a little achy right now, but it has lessened. I just have a hot water bottle to help. Untill next time.......gak!

orange1

Lexislove - Glad to hear it went well. 

I just had my check-up with my onc- very similar thing.  I've had a weird rash on my back for months and was fearing skin mets.  He said no way so I am mostly relieved (still wondering what that rash is -the dermatologist doesn't know what it is either).  Then I got my zometa (no lupron for me because I am in chemopause and 47, so not likely to get my period again).  I am already plotting how to stay on Zometa once my 3 years are up.

 I guess the docs get used to dealing with our anxiety, but it must get old.  Whatever they are getting paid, it is not enough.

Estepp

Lex.. GREAT to hear!... how is your rads boob doing? Are you just having implants exchanged with no flap surgery? I have exchange in two weeks.. no flap... rads.... and I am praying!!!!!

lexislove

It is doing well Laura. I have my exchange surgery most likely in November. At that time I would have had my TE in place for 18 months!..ugh.

I'm not doing flap surgery, even though I do have some to spare. I just can't go through anything "big". I will be doing a simple exchange and on the otherside a lift.reduction.

I have heard that the exchange surgery is much easier compared to the mastectomy. I think you will be surprised. I know everything will be good for you...and me!

Monty

Hi

I haven't ever checked out this thread before but I do have a question about Herceptin - I have only 5 sessions left before my 1 year time is up - as far as I have been told I will only get Herceptin for one year but I notice many of you ladies have been getting it for a number of years.  Why is it only offered for a year?  I asked my Herceptin/Chemo nurse and she coudln't answer the question but maybe you ladies can as you appear extremely knowledgable on this subject.

 Also, Orange - when did you finish having radiation?  Within 2 weeks of finishing radiation I got a weird raised rash on my lower back and side/stomach and when I spoke to the onc & radiaition people people they told me it was known as radiation dermatitis.  I was told to use GLAXOL BASE cream and within a few weeks it went away although when I get hot or go out in the sun it does show up a little, kind of as though it has scarred.  Maybe that's the same for you.

I am going now to see if I can find out any more info on Heceptin to see if I can find out some answers.

Love to all

Gaynor