Just wanted to introduce myself...
 

Goodafternoon.
I hope I am posting in the right place.I found this site through a link through Susan Love MD site.

I am a 4 time survivor of breast cancer since my first dx in June 2000, when I had a lumpectomy, (stage 2b, grade 3, 4.5cm lump removed with 4 of 9 lymph nodes infected).
A/C and Taxotere was the cocktail of choice followed by 6wks rads.

Jan 2002, lumpectomy same breast, same spot, 2.5 cm lump removed, no nodes. No treatment available to me. Chemo and rads were too dangerous so close to last treatment. Suggested treatment... mastectomy.

After many months of careful deliberation, July 2004,I had bilateral mastectomies, with immediate diepflap reconstruction. Pathology following removal of same left breast, showed more cancer cells, again, same spot!

Aug. 2005... Breathing became shallow, while swimming with my kids at cottage so following my instincts I insisted I wanted to have a chest x-ray,( Onc thought it was not necessary), and sure enough, 2 days later the Onc. phoned me at home to tell me I had multiple lesions in both lungs.

I was put on Herceptin with Navelbine(chemo), and early xrays showed lesions were shrinking and disapearing.

Recent CTscan ( Dec. 29th) on chest showed almost ALL lesions are GONE. I witnessed this with my own eyes as I had the onc show me 2 separate computer moniters with both before and after views. THEY WERE INDEED GONE!!

I am not for a moment suggesting that Herceptin is a cure. But for now, it has given this survivor, age 48, mom of 3, and wife of 20 yrs.... some hope.

I am very optomistic, and have a positive outlook and am now trying to get fit, while I train for "The Weekend to End Breast Cancer" walk, ( 60k) in Sept.

I am always open to meeting new survivors(online), and welcome emails.

Nice to have this site, especially for us Her2 gals.

Thanks.

"Lucky"

Welcome
 

So glad to hear your responding so well to treatment. This is my second dx of breast cancer. I have finished ac/taxol and am now taking Arimidex and Herceptin.

Like you, this time I decided to have bilateral mastectomies with DIEP reconstruction. I am one year out from reconstruction and am scheduled to finish Herceptin in June of this year.

When they did my bilaterals, they found a tumor and lymph node involvement in the supposed unaffected breast. I thank god every day I made the decision to just go ahead and have both removed. It was a good decision for me.

So again, welcome. I wish you the best in your battle!

Unity is strength. Knowledge is Power. Attitude is Everything!

Ginagce

Ginagce....
 

Thanks for your welcome and your reply.

I am happy that you had the bilateral mastectomies also! Whew!
Congratulations on your successful diepflap!

How do you like your reconstructed breasts and flat tummy? Mine is not so flat anymore... well... more like 4 mos pregnant look. Flat ... but "out there" if you know what I mean.

I forgot to mention I just finished the chemo ( this time with Herceptin) back in Dec. 2005, and I am just on Herceptin alone now, indefinately. So when I was on chemo, I tended to graze... and gained some weight.

Have you had your nipple reconstruction yet? I had mine, but was to have some last adjustments done, when I was diagnosed with mets to lungs. Needless to say I had bigger fish to fry, to that was put on hold.

I still feel I may want to 'complete' it someday. I hope I am given the chance.

Lucky

WOW Lucky...
 

you TRULY an inspiration to us all. Welcome, and thoughts and prayers are w/ you.

Rhonda

Thanks Rhonda!
 

Thanks so much.

I also get much inspiration from other survivors like the ones, in this site, and others that I belong to.

I think sharing, is such a help, and many survivors do not
have great support at home also, so thank goodness for the founders of these wonderful sites, for all the people who are reaching out.

Nice to meet you!

Lucky

Hi Lucky
 

Just Wanted To Welcome You To The Board. Always Good To Hear A Battle Story Where One Of Us Is Winning. Keep Up The Good Work!

Welcome Lucky, we always enjoy another member!! Even though we wish you didn't have, i'm glad we are here for you!!

Hi Lucky, and welcome to the site...I've had good results in the past with Navelbine/Herceptin for systemic lymph node recurrences, and am on my third regimen since 2001, with Herceptin maintenance in between. So good to hear you've had what I think is termed a Complete Response! Way to go girl!

<3 Lolly

Lucky,

I am so happy to read that you are doing well. I hope that you continue to do well with the herceptin.

All of the ladies here are wonderful and supportive. I am thankful for them all.

Love,
Lexi

One question, does Navelbine make you lose your hair? I figure I will be on it sometimes along the way here and was just wondering. I'm pretty much bald now with the taxotere and I figure as soon as my hair grows back out, they will give me something else to zap it out again...positive thinking..ehh...lol...sherryg683

Dear Lucky,

Welcome to the Boards! You have come to the right spot for sharing similar experiences and just getting good sound advice.
When I read your story, it sounded very similar to my own. I am a year ahead of you...a 49 year old mother of four, now 22 months past metastatic diagnosis...I too had Navelbine and Herceptin for lung metastasis and I too have NED (no evidence of disease)...I have been continuing with weekly Herceptin since. Take heart; once you are off the Navelbine, you can get your strength back fairly quickly!
You sound like a "helluva" strong survivor; we are glad you found us!
Love Kim from CT
ps sherry, Navelbine does NOT make you loose your hair

Thank you Lucky. I am pleased with my reconstructed breasts...they're not perfect but I'm glad I went with the DIEP. And yes, I too love the flat tummy thing. It was like a bonus. I still smile when I catch a glimpse of my profile in the mirror and see the same tummy (or lack of it) I had when I was 30. Still gives me a giggle!

I have not gotten nipples yet, there needs to be some adjustment surgery first. And right now, I'm having such a difficult time with the herceptin & arimidex, I've postponed it indefinitely. One day when things settle down I'm sure I'll complete the surgery.

In the meantime, I'm just happy to be alive and have breasts....period!

I too hope that you will be given the chance to "complete" yours too. If courage takes you to success, you're already there!

Ginagce

Wonderful
 

I saw the same thing with my wife. It great to see them go the other direction and shrink. Good news.


John

Herceptin has been such a miracle for quite a few of us. I was on a chemo break and just on Herceptin a year ago when I reached NED from liver mets.

I have maintained NED from liver and bone mets for over a year now on just Herceptin.

Hope it works as well for you!

Hi Lucky,

Welcome and ditto to the above.

Can I ask 2 personal questions? Where are you from and what does 4X mean? It's nice to know where our new brothers and sisters are from cuz some of us live close enough to visit face to face.

I had tram flap recon. done on my left breast 14 1/2 years ago. If I had it to do over I would of had a bi-lateral mast. I have had repeated abnormal mamo, ultasounds and 2 benign breast biopsies.

I did have the healthy breast lifted so I have pretty good symetry. I'm able to go bra-less which is nice because the bra strap rubs on my port and is uncomfortable.

Again, Welcome aboard. Blessings to You. Lu Ann.

Hi Lucky,

Welcome to the board. Being a stage IV breast cancer patient isn't what it used to be, thank goodness. I have been battling this BC since 1997 and stage four since 2001. My kids were 11 and 16 when I was first diagnosed and I worried about even making it to the oldest's high school graduation. Well, my son has graduated college and my daughter will this May. Not only that, they are both married and I have a grandson that is almost 2! My life has been so rich, and I really am enjoying everday. This board has given me so much hope and I know you will find it a truly comforting and inspiring place to visit.

Nice to meet you! Kim in CA

Welcome, and it is great to hear of your good response to treatments...


and to sherryg - I had navelbine /herceptin and did not lose my hair, but then I also had taxotere/herceptin, and did not lose my hair then either...

Shell

Thanks
 

Thank you to all!

I hope I haven't forgotten anyone, if so, I am sorry I blame it on chemo-brain.

Aquinis2000, Michele, Lolly, Lexi, SherryG, Mamacze... you are very warm and welcoming and thank you for making me feel at home.

Ginagce- I am sorry you are having such a hard time with Herceptin and Arimidex. What kind of problems?

John...Thank you for sharing your wife's good news with me. It means alot.

Esther- Thanks for sharing your news about NED. I can't wait for that time to come. You give me hope.

Luann- I am from Ontario, Can. 4x means Four times... the amount of times I have been diagnosed and LUCKY to still be here. I can sure relate to the bra and port! I like to go braless often, but thank Heaven for my port everytime I go for treatments.

Kim in CA- Thanks for giving me Hope.

Shell, - I also did not lose my hair with Navelbine and Herceptin mix, but it got dry and very thin. I lost all of my hair 6 yrs ago with AC and Taxotere.

What a blessing that I found you all. I feel like I have been given a new lease on life with all of your good news stories and positive attitudes.

Lucky

Navelbine
 

Sherry...


No Navelbine didn't make me lose my hair although, I was
told that it might.

It did get dry and a tiny bit thinner though.
So far no real side-effects from Herceptin... just wondering if
anyone has any??

Lucky

Lucky
Welcome to the board...love the name! You have come to an amazing site filled with amazing women....I have learned so much through the others on this board...the committment to help one another here is unbelieveable! I truly do not know what I would do without them. As far as the Herceptin goes, I have been on it 2 1/2 yrs, every 3 weeks...very tolerable, the only problems I have had is watery eyes, runny nose, cracks in the skin on my fingers, and I seem to bleed easier. There can be achiness after an infusion, flu like symptoms, I have had this a few times, but not every time. I seem to get hand cramps occasionally, dont know if that is from Herceptin. Anyway, all mild slightly annoying things that are very minor when I think what Herceptin has given me!