HER2 Support Group Forums - View Single Post

Andrea Barnett Budin · 01-14-2016, 06:28 PM

IT WAS SO WEIRD. I joined METASTATIC BREAST CANCER PROJECT WORKING GROUP. On FB.

People post all sorts of things. Some about their stage and specifics. I replied to one of those and mentioned my 20 yr survival. What. WHAT????

So pp started replying all excited. And I responded to their questions. Then someone said they didn't think that was the forum for such discussion. So I stopped. The next day I posted that I wondered why it wasn't appropriate for a group of metastatic bc ladies to share information, experience, what worked and didn't and so on.

Later yesterday one of those ladies who is apparently very well connected in the metsters community tagged me on my page giving a very brief synopsis of who I am.

I replies started pouring in. Over 200 pp replied. So so excited. Of course I mentioned HER2 site. And some asked how they could join.

I was so elated. So many going through hell, scared, worried. And I was offering hope and my sunny outlook and advice and they couldn't stop thanking me and asking for my supplement list and so on.

I have been on a high ever since.

This is what I love doing. This is why I believe I am still here. It's my mission. To share and spread my message to all who'll listen.

Sure some don't want to hear. They say some eat sugar some don't. They all die. Well, that person isn't going to like my message. I'm an acquired taste perhaps. But I actually like that person, just not so much her bad attitude. I will have to work on her. LOL.

So I was checking the exact name of the HER2 site I always talk about. Some said they went to that site but couldn't figure out how to register and damn if I couldn't find it either.

It's right there. I am too old to know the simplest tech thing. I'm lucky I can turn the light on in each room. These new fangled fancy switches, dimmers, push to the right for this, to the left for that. What happened to on and off??? Too funny.

Anyone, I think they will feel right at home here and you are all so welcoming. One is a newbie. Others are very experienced let's say.

We could use some new blood. Fresh perspectives and experiences, don't ya think??

Hugs,
Andi

01-14-2016, 06:28 PM	#5
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	Re: New members want to join IT WAS SO WEIRD. I joined METASTATIC BREAST CANCER PROJECT WORKING GROUP. On FB. People post all sorts of things. Some about their stage and specifics. I replied to one of those and mentioned my 20 yr survival. What. WHAT???? So pp started replying all excited. And I responded to their questions. Then someone said they didn't think that was the forum for such discussion. So I stopped. The next day I posted that I wondered why it wasn't appropriate for a group of metastatic bc ladies to share information, experience, what worked and didn't and so on. Later yesterday one of those ladies who is apparently very well connected in the metsters community tagged me on my page giving a very brief synopsis of who I am. I replies started pouring in. Over 200 pp replied. So so excited. Of course I mentioned HER2 site. And some asked how they could join. I was so elated. So many going through hell, scared, worried. And I was offering hope and my sunny outlook and advice and they couldn't stop thanking me and asking for my supplement list and so on. I have been on a high ever since. This is what I love doing. This is why I believe I am still here. It's my mission. To share and spread my message to all who'll listen. Sure some don't want to hear. They say some eat sugar some don't. They all die. Well, that person isn't going to like my message. I'm an acquired taste perhaps. But I actually like that person, just not so much her bad attitude. I will have to work on her. LOL. So I was checking the exact name of the HER2 site I always talk about. Some said they went to that site but couldn't figure out how to register and damn if I couldn't find it either. It's right there. I am too old to know the simplest tech thing. I'm lucky I can turn the light on in each room. These new fangled fancy switches, dimmers, push to the right for this, to the left for that. What happened to on and off??? Too funny. Anyone, I think they will feel right at home here and you are all so welcoming. One is a newbie. Others are very experienced let's say. We could use some new blood. Fresh perspectives and experiences, don't ya think?? Hugs, Andi __________________ Andi BB '95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive... '98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!) + good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either... Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...