looking for survivors

[aquinis2000]

Hi all. I'm a new member and have posted on the newcomers page, but i need someone over here to talk to me about surviving . I have stage 4 bc, two tumors , one invasive ductal, one invasive lobular, +estrogen, +her2, mets to axillary and chest lymph and so many mets to my liver they told me it looks like swiss cheese. i have had 4 a/c and 1 taxol+herceptin and im tierd and im sick and i can't find any info on people gettting through this. I know your out there, but the only stuff i find is that if i get 24 month, i'm doing good. I want to make the most of the time i have , so i;m looking for someone who had a similar dx, who still around and fairly healthy. Thanks. Just looking for the truth.

[RhondaH]

This is from Steph N:

***************

Hey there, Jessica -
Yes, I recall your posts about that single liver met. So GLAD the chemos did the trick finally. My med onc said that if the chemo did not get that tumor they would try a resection, but that was considered a last resort. I would leave yours alone on the basis of my med oncs advice.

About the statement that your docs feel this tumor will rear its ugly head again. My scans show that the stubborn tumor is GONE - not even scarring there at this point. My whole liver cleaned itself up and my med onc says no one would believe how it looked in Jan of 2004! Swiss cheese with shotgun holes added in!

So, if you still have a small spot where the tumor was, that does not mean that it will come back. What would probably happen to me is a whole new crop of tumors. But they have to get past the Herceptin and my own stronger immune system now. So, I just plan to be another Ginger Empy and carry on with my life!

Good to hear from you!

[StephN]

Hi Rhonda and Aquinis -

That post should have said "Jan of 2001." That is the time when my rampaging liver mets were discovered.

Don't forget Esther and Al's wife who were almost in liver failure, which was a little worse than mine. Those ladies are doing just great now.

I have been off chemo now for 3 1/2 years. So, am living proof that someone CAN get the better of the cancer and have a life to live.

At my mets diagnosis I had the same questions and wondered if I could possibly beat the prognosis of 'perhap a year at the most.' That is when I found the book about the Making of Herceptin as there was NO website such as this to find anyone else in my predicament.

Hang in there HARD. Dig in your claws and keep fighting!

Steph,
You are truly an inspiration! Thanks for sharing!

[Kim in CA]

It's been four years now and liver still looks good! I was originally told 18 months was probably how much time I had left. Hang in there!

Love Kim in CA

[Christine]

Pay ATTENTION AND THINK POSITIVE HERCEPTIN IS A WONDERFUL CHEMO AND HAS WORKED WONDERS FOR MANY WOMEN ON THIS SITE. There are so many combinations that work with Herceptin there is proof here on our site that we are surviving. I do understand your fears, but a you are truly lucky to have Herceptin by your side.
Hugs, Christine
hOPE YOU DON'T MIND NME SHOUTING,; L lose it once in a while

[aquinis2000]

Ladies..............i Don't Care If You Shout, Whisper Or Scream.......all's I Wanted To Hear Is That People Are Surviving, The Only Way To Know Is To Ask!!!my I Called My Husband In To Read Your Responses And He Nearly Cried With Joy To Hear Your Stories Of Survival...please Keep Them Coming As They Are And Ecouragement And A Blessing Through This Difficult Time. Thanks To All In The Swiss Cheese Club!!!!
Love, Toni

[Tom]

Dear Toni,

You will find yourself clinging to this website through the good times and the bad. The women (and men) who post here are the most wonderful bunch of human beings I have ever run across. They will poor their hearts out to you with support and some of the best advice available anywhere. They have walked the walk, and continue to do so on a daily basis. You will read of things here first, and carry the information to your oncologist, only to discover that you are telling him/her something they didn't know of yet. I am totally addicted to this site, and I am so grateful to Joe and Christine for providing it. It has been a Godsend for me as I try to guide my Mother's treatment. Keep up the faith, and remember to keep the Creator close by your side though this journey.

Welcome, and Best Wishes
Tom

[tammymarie1971]

Hi Toni...I too am a stage 4 survivor..I was re diagnosed in mar'04 with liver mets..I had a liver resection in Aug'04 and just had scans done last week liver is still clean!! I only had 1 met to the liver but they prognosis was still grim they said!!! I had 3 rounds of herceptin/taxol first which shrunk the tumor in half than I had surgery and another 3 rounds of herceptin/taxol..Now of course knowing what I know now I would have insisted on at least a year of herceptin...I am back on herceptin now though and am grateful!! Wait until Gina posts she had liver mets in '99 and her liver is also clean!!There is a lot of hope out there. DON'T EVER LET THEM TAKE YOUR HOPE!!!! Crap it ticks me off so much when doctors give a prognosis who are they??GOD? I think not!!!I am so glad there are so many women here who CHOSE not to obey their doctors' prognosis!!!!!Take care Toni..Come to us often..When I read how your husband was overwhelmed with emotion over all the posts I felt my heart swell for him...Our poor husbands!! They want to "fix" us so bad and can't.. it must be really hard for them..big (((hugs))) to your husband and all our husbands!!!
Tammy

[TriciaK]

This thread and all the replies, which I read twice with tears, is a perfect example of why this site is such a great blessing to us all.Most of what we share here is HOPE. As well as faith and love and experience, of course. As I've said before, Fear and Faith cannot occupy the same space; neither can Despair and Hope. Faith will conquer Fear, and Hope will conquer Despair. I tell everyone at the chemo lab about this site and what a blessing it is. Toni, I pray you and your husband have been infused with hope, and are uplifted and ready to sharpen your claws and dig in! I'm a 20 year survivor, third time, 2nd time in stage IV, and my last PET scan showed NED. I haven't had liver involement so far,just lungs and spine, but I know if it happens I will reach out to these wonderful people here and I'll keep on fighting. I can't take herceptin now because my heart is showing some weakness, but I know if I need it again the herceptin will be available, and so will the hope and love on this website. Please let us hear from you often! Hugs, Tricia

[aquinis2000]

Thank You All for your input, encouragement and prayers. This site has already brought more joy to my family than any will ever know.I get on this computer 5-6 times a day now, just waiting to read one more survivor story. I feel as though I have a huge family fighting and helping me through this emotional rollacoster called cancer.I only pray that some day I will be a senior member, helping someone else out thru their struggles. God Bless You All for arming me with information and treatment plans and most of all hope.
Toni

[Gina]

Just had my 8 year anniversary since mastectomy on November 17th...I was Stage 3b at that time...turned to Stage IV with severe liver mets in spring of 99...have used Herceptin alone..off and on since then and am still here doing JUST FINE..smile..Hang tough, Gina

[al from Canada]

Toni,

Have you read the survivorship stories on the site?
The link is:
http://her2support.org/vbulletin/forumdisplay.php?f=30

Here you'll find the bravest people on the planet relive their experiences with a level of passion and honesty you'll find no where else.
Al

[Lolly]

Toni, I've been Stage IV since January 2001,with lymph node mets(neck, supraclavicular, and axilla). I've been on Herceptin ever since, with chemo added in occasionally to keep me either NED or Stable. I KNOW you can beat these mets back, as the others with liver mets have attested. Sometimes finding the right chemo which will work best for you in combo with Herceptin takes some trial and error, but don't give up. We're here to help you get through the ups and downs, always.

<3 Lolly

Thanks you all for your wonderful stories! It really gives hope for the future.
I was diagnosed with liver mets in february this year. Been on herceptin an navelbine since begining of april. The mets are now almost gone.
The really good thing besides the combo working so well, is that I have no pain or what so ever from the treatment. I have been able to go on with a normal life.

Good luck to all of you!