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-   -   Stage IV Survivors out there? (https://her2support.org/vbulletin/showthread.php?t=62025)

Gift 10-21-2014 10:27 PM

Stage IV Survivors out there?
 
I've been through 8 rounds of Taxotere + "Herceptin". Next is only "Herceptin" every 3 weeks until ..... (eternity, keeping my fingers crossed).

Would really like to know how many Survivors from Stage IV are out there and what is your treatment like. Please give me hope.

Gift

StephN 10-22-2014 04:21 PM

Re: Stage IV Survivors out there?
 
Dear Gift -
I raise my hand to your question. It is now 15 years since my initial diagnosis and over 13 since staged up to IV. I have been OFF any treatment for nearly 5 years now.

You will find some others such as AndiBB who are like me and no longer have any evidence of disease.

You are a smart cookie and have been learning about this disease and how to fight it. Put that knowledge to use and use all the tricks in your bag against the cancer.

Gift 10-22-2014 05:46 PM

Re: Stage IV Survivors out there?
 
Dear StephN,

Wow, you have been through and win, such an inspiring story.
btw can anyone with stage IV off the treatment, when could that be?

Sending big regards from Thailand

annettchen 10-22-2014 07:42 PM

Re: Stage IV Survivors out there?
 
Hello Gift,

I hope one day to get to where Steph already is... ;-) I only just got started on this journey, but am so far doing well (re-staging on Friday, so we'll see what that will bring).

In the meantime, since you asked about treatments: Like you, I also got 6 x Taxotere and Herceptin, but in addition to that also got Pertuzumab (Perjeta). Since I have bone mets, I also got Xgeva every four weeks.

Currently (since July) I'm on only Herceptin and Perjeta, and my oncologist would like to reduce the frequency of Xgeva - will discuss next week.

And yes, there are many long term survivors in this forum - mamacze comes to mind, as do Adriana Magnus and Bunty. I recently heard from a woman my age that has been on Herceptin only for 4 years - no progression! I also think that some long term survivors that are NED for a considerable time may not come to the forum any more, or very rarely - they are out there living their life!

Hang in there, one day this will be a manageable, even curable disease!

Pamelamary 10-22-2014 11:34 PM

Re: Stage IV Survivors out there?
 
Dear Gift,
i am almost 3 years post Stage IV diagnosis. After 6 rounds of taxotere, I am currently living well on Herceptin, Tamoxifen and Denosumab for the bones.However there are many others, like StephN and AndiBB, in whose footsteps I hope to follow!
Best wishes to you..... Pam

Gift 10-23-2014 10:36 PM

Re: Stage IV Survivors out there?
 
Hello Annette and Pam,
Thank you for checking in.
I like the fact from Annette that "they are out there living their life".
Because of today technology, there are many stage IV breast cancer survivors i believe. I really hope one day it will be like HIV that we can live with the control from medicine and no more death sentence.
Love you all,
Gift

Mtngrl 10-25-2014 06:06 AM

Re: Stage IV Survivors out there?
 
Dear Gift,

I, too, find StephN's story inspiring, especially when I read studies of long-term survivors who are ER-positive, or only have bone mets, or are oligometastatic (only one, or just a few, mets.) I'm not like any of those, and neither is she. She had brain mets! She had too many liver mets to count! And yet, here she is.

Like many others, I appear to need "Herceptin-plus" to control my cancer. I had my most significant progression (a relative term, to be sure--it wasn't a whole lot) while on Herceptin and Arimidex. Since it turns out my cancer is no longer ER-positive, that amounted to being only on Herceptin. But with various combinations of Herceptin plus something else (Perjeta and Xeloda right now) I've been mostly stable and functioning well.

You can get lots of other stories on this thread: http://her2support.org/vbulletin/sho...=calling+stage

annettchen 10-27-2014 12:11 PM

Re: Stage IV Survivors out there?
 
Hi Gift,

just wanted to let you know - had my first re-scan after 3 months of Herceptin / Perjeta / Xgeva only. They did CT, Breast US, blood work - and an Echo just to make sure my heart is dealing ok with the Herceptin.

I'm stable!

I know this does not make me a long term survivor, but it's a step on the way, and I was relieved to get confirmation that I don't seem to need Chemo at this point to keep the tabs on cancer...

I'm sure it will be the same for you!

Gift 10-30-2014 03:00 AM

Re: Stage IV Survivors out there?
 
Dear Mtngrl, Thank you for the link. The stories over there have given me a lot of hope.

All the BEST for you Ladies,
Gift

sandra85208 11-17-2014 08:02 AM

Re: Stage IV Survivors out there?
 
Dear Gift: How are you today? I think we had the same dx. I was in a clinical trial. Do you have access to clinical trials??

sandra85208 11-17-2014 08:03 AM

Re: Stage IV Survivors out there?
 
Gift please contact me at sandra85208@gmail.com

Gabrielle 12-05-2014 07:19 PM

Re: Stage IV Survivors out there?
 
Wonderful news, Steph!


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