HER2 Support Group Forums - View Single Post

Andrea Barnett Budin · 08-05-2012, 10:33 AM

Hello Kim,

I too am glad to hear from you, though wish you weren't in this spot.

Like Steph, I'd definitely want to know what CT scans say. (Believe it or not, my fav onc doesn't believe in PETs and I've never had one.)

A few yrs ago, while off Herceptin for 2 yrs my tumor markers -- CA 27.29 -- that's the one we check started to go up. Scary. I couldn't wait the 3 mnths till the next bld test, so we tested in a mnth. Fav onc acquiesced as I was a mess.

My number was even higher. Same deal. Next mnth tested and was getting pretty frantic, as you can well imagine. (It was ME who found my metastasis throughout my liver requesting a sono when liver enzymes came back slightly, very very slightly elevated -- 3 x...) so I do stay on top of all my numbers. Gather every report. Compare every report w/previous reports. Study them. Who cares more about me than me. Docs are busy...

Talk abut run on sentences! I don't think that was a sentence. Anyway, 3rd CA 27.29 tumor marker test came back w/me -- out of normal range! Utter panic.

My fav onc said, In situations like this one of us must remain calm. We'll wait and try 1 more mnth. Other onc in NY said, What are you waiting for???!!!! You're trending upwards. Get back on the Herceptin, Andrea! My thoughts exactly.

Well, next test showed that my number had plummeted. Gone way way down. Mid normal.

In retrospect, I had been sick for 3 mnths w/a weird flu. My body was messed up. And that was reflected in my CA 27.29. I healed and got myself back to normal apparently. They tested that last number twice, cause they couldn't believe it! Came back the same.

Sharing my story to give you a little perspective, Kim. Hopefully all the stress you've been under (w/the selling of your 20 something yr old home) is the culprit. Not the return of cancer. Which is our first thought, once we've been through all we've been through. Learned a lot.

I too was so naive back in the day. Go riding. Live life. Breathe. Please keep us all updated. We're all in this with you now.

PS -- I am now 4 yrs off of H. It's there if I need it, but so far, I remain stable. So say my CTs and my blood work. I wish just that for you, Kim.

With love,
Andi

08-05-2012, 10:33 AM	#13
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: Oh PooP...Herceptin Holiday Over! Hello Kim, I too am glad to hear from you, though wish you weren't in this spot. Like Steph, I'd definitely want to know what CT scans say. (Believe it or not, my fav onc doesn't believe in PETs and I've never had one.) A few yrs ago, while off Herceptin for 2 yrs my tumor markers -- CA 27.29 -- that's the one we check started to go up. Scary. I couldn't wait the 3 mnths till the next bld test, so we tested in a mnth. Fav onc acquiesced as I was a mess. My number was even higher. Same deal. Next mnth tested and was getting pretty frantic, as you can well imagine. (It was ME who found my metastasis throughout my liver requesting a sono when liver enzymes came back slightly, very very slightly elevated -- 3 x...) so I do stay on top of all my numbers. Gather every report. Compare every report w/previous reports. Study them. Who cares more about me than me. Docs are busy... Talk abut run on sentences! I don't think that was a sentence. Anyway, 3rd CA 27.29 tumor marker test came back w/me -- out of normal range! Utter panic. My fav onc said, In situations like this one of us must remain calm. We'll wait and try 1 more mnth. Other onc in NY said, What are you waiting for???!!!! You're trending upwards. Get back on the Herceptin, Andrea! My thoughts exactly. Well, next test showed that my number had plummeted. Gone way way down. Mid normal. In retrospect, I had been sick for 3 mnths w/a weird flu. My body was messed up. And that was reflected in my CA 27.29. I healed and got myself back to normal apparently. They tested that last number twice, cause they couldn't believe it! Came back the same. Sharing my story to give you a little perspective, Kim. Hopefully all the stress you've been under (w/the selling of your 20 something yr old home) is the culprit. Not the return of cancer. Which is our first thought, once we've been through all we've been through. Learned a lot. I too was so naive back in the day. Go riding. Live life. Breathe. Please keep us all updated. We're all in this with you now. PS -- I am now 4 yrs off of H. It's there if I need it, but so far, I remain stable. So say my CTs and my blood work. I wish just that for you, Kim. With love, 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...