HER2 and 5 years Out

Hi Barb,

Congratulations on 5 years!  It's a good milestone to reach.  I actually had my 6 year anniversary on Halloween.  I actually forgot until today. 

I'm sure you are much like I was when dx'd and told you were HER+ - terrified!  There was absolutely nothing good about being dx'd as HER+.  Only about 20-25% of us are HER+ so we are a minority to begin with.  They had only started routinely testing for HER+ so there weren't any statistics.  You couldn't really find any long term survivors but it wasn't because they didn't exist.  It was because they had only began to test for it.

Like you, I did not get Herceptin because it was only offered to stage 4 ladies.  I only did 4 rounds of AC and here I am 6 years later still NED.

Until about 6 months ago, I was doing great and then discovered the Adriamycin had damaged my heart so now I am dealing with that.  Otherwise, I am doing good.

Congratulations on reaching the 5 year milestone!!!!

PS...did your onc release you?  Just wondering because mine didn't.  At the office I go to most are released after 5 years of good checkups but he wanted me to continue coming on a yearly basis for 10 years.  I assume it is because I am HER+.

Debbie

That is terrific!! Thanks for sharing!

Hugs,

Lexi

This thread SHOULD be posted several times. Great milestone, thanks for being around to let us know.

Fists up!

I'm 5 years out as well, diagnosed 11/2002 stage 1, grade 2, 1.4 cm IDC ER/PR/Her2+ at 33 years old.  I only had 4AC and tamoxifen.  No herceptin for me since it was only available to stage 4 at the time. 

DebbieB, how did you know the Adriamycin had damaged your heart.  What symptoms did you have?

Lisa

I was dx'd at 45 and am getting ready to turn 52 in Dec.  For the first 2 years, every ache and pain did scare me because of all I had read about HER+.   My onc said that whenever you have an ache or pain, to start a "clock" and if that ache or pain continues for 2 weeks then you need to get it checked out.  When you start doing that you begin to realize they are random aches and pains.  Plus I think you end up having more aches and pains after undergoing chemo.  The chemo seemed to have brought on arthritis for me. 

Lisa,  I realized that Adriamycin could cause heart damage.  Unfortunately I did not understand what the symptoms would be.  I also assumed the problems would have started much sooner after I finished chemo and not over 5 years later!  I started having shortness of breath which I thought was bronchitis.  Over a period of about 3-4 weeks it got to the point where I could not walk 10' without being out of breath.  Plus I would wake up every night around 2 a.m. unable to breath.  As long as I was sitting up and not exerting myself, I was fine and didn't have problems breathing.   I went to the dr 6 times in 4 weeks including 2 trips to the ER.  The last trip to the ER, I noticed my ankles had swollen.  When the nurse saw that, the dr was in there in about 2 minutes and said my problems were heart related!   The dr told me that had I not walked in when I did that I would have come in on a stretcher.  I'm just not sure if he meant dead or alive!

Debbie B

Count me in too -- no Herceptin, no Tykerb, and still NED. 

Lumpectomy, CAF x 6 followed by rads, then 1 3/4 years tamoxifen....

natural exposure to sunshine of 30 minutes a day (whenever possible)...

Organic food

Daily turmeric in black tea or green tea....

No sugars of any kind in the diet

Lost 20 pounds in 5 years that I gained with chemo (aiming to get rid of aromatase-containing body fat)....finally am barely within the range of normal BMI... 10 more pounds to go to be mid-range....

Thank you so much for sharing this information with those of us who are just going through treatment. I am HER2+, but I had a very bad allergic reaction on my third infusion of Herceptin (throat closed up, gasping for breath,coughing, couldn't swallow, and vomiting) so my onc does not think I can get it again or the next time I could have heart failure.  I've been worried about not getting my full year, so it is great to hear about those of you who didn't get it and are still NED!

Thanks for shining a little light in some dark days!

DeAnn  

Thats great to hear just found out i'm her+++  er/pr - .After i have finished 4 a/c then 4 taxol with weekly dx of hercpten, followed up of a year of 3 weekly hercpt. It's good to hear there is light at the end of the tunnel. Thank you Annaanne, AlaskaAngel,barb, debbie, and lisa.Its great to hear good news well done happy NED.

Hi everyone,

Count me in as someone who didn't receive Herceptin and is Her2+++. It was still in clinical trial when I was diagnosed in October 2001, and I was placed in the control arm so didn't receive it. I had a double mastectomy w/ reconstruction, 4 rounds A/C, 12 rounds Taxol, and 33 rads. I finished treatment in July 2002.

Last fall, right after turning forty and having my 5-year "cancerversary", I found out I was pregnant. Quite a shock, to say the least, since I hadn't had my period since January of '02 and had gone through lots of lovely stages of menopause so I assumed that getting pregnant was not an option. I also had mixed feelings about the wisdom of bringing a child into the world when I might not be around to raise her, and whether the surge of estrogen might affect my weakly-estrogen-positive cancer. After much soul searching, we decided to have the baby. I had a great pregnancy (except for some horrid morning sickness ) and gave birth to a healthy girl on 7/7/07.

 She is the joy of my life! ( --ha, I first typed that as "job" of my life, and I guess she is that too   )

Anyway, I am very grateful to know that Herceptin is out there and is helping lots of women who are Her2+++. I just wanted to add another story of someone who didn't receive it and is doing OK!

Best of luck to everyone and Happy Thanksgiving.

LeeAnn

Oh LeeAnn,

Both of you are just beautiful! What a wonderful surprise! I am so happy that you continue to do well. You will be here to raise your beautiful girl! And I'm with Debbie, how couldn't she be your lucky charm! 7-7-07!! Fantastic!

HUgs,

Lexi