HER2 Support Group Forums - View Single Post - Finally

Andrea Barnett Budin · 10-24-2011, 02:35 PM

Hey Joan!

Thanks for explaining. How great that your doc was willing to give H off label!

When I was orig dx (July '95) they weren't talking about HER2 gene. Then at my recurrence (Aug '98) it was in clinical trials and people were in desperate need of it. So the FDA fast-tracked H and it became available Sept. 28, 1998! I saw Herceptin as a blessing, though being dx w/a highly aggressive canser isn't exactly uplifting, for sure. I figured, at least they have something that stops that defective gene from overproducing!

I think each of us has at least one regret. I was told no radiation as I had a mastectomy/no breast tissue. But, it seems some had it even though... So in '98 I began second guessing.

Some of my oncs said since I had been orig ER borderline and put on Tamoxifen that that may have caused the metastasis, or -- being HER2+ (80% as they calculated back then) could have been the reason.

I keep looking forward. Told that what I had in '98 -- mets throughout my liver, too many to count -- was "incurable, inoperable, and that I would be on long term chemotherapy for the rest of my life.

I did 8 mnths of Taxotere, and w/a pleural effusion and peri-cardial effusion, water pouring out my eyes from the dryness, pain in every limb -- I just couldn't take 1 more treatment. To me, if I'd not been on my supplements (against most oncs' advice) during chemo, I wouldn't be here. They all helped keep my ejection fraction at 50 (down from 65%), kept my immune system fighting, fighting off free radicals, blah, blah.

And Herceptin (the "easy" chemo) became my long term chemotherapy.

After 10 yrs, I took the chance of going it alone, just me, my Spirit, and God.

My fav onc always says, if God-forbid I needed H, I can always return.

Steph is very brave moving forward w/the new vaccine. Now, I'm thinking...
Andi

10-24-2011, 02:35 PM	#31
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	Finally - a Vaccine Trial for me! Hey Joan! Thanks for explaining. How great that your doc was willing to give H off label! When I was orig dx (July '95) they weren't talking about HER2 gene. Then at my recurrence (Aug '98) it was in clinical trials and people were in desperate need of it. So the FDA fast-tracked H and it became available Sept. 28, 1998! I saw Herceptin as a blessing, though being dx w/a highly aggressive canser isn't exactly uplifting, for sure. I figured, at least they have something that stops that defective gene from overproducing! I think each of us has at least one regret. I was told no radiation as I had a mastectomy/no breast tissue. But, it seems some had it even though... So in '98 I began second guessing. Some of my oncs said since I had been orig ER borderline and put on Tamoxifen that that may have caused the metastasis, or -- being HER2+ (80% as they calculated back then) could have been the reason. I keep looking forward. Told that what I had in '98 -- mets throughout my liver, too many to count -- was "incurable, inoperable, and that I would be on long term chemotherapy for the rest of my life. I did 8 mnths of Taxotere, and w/a pleural effusion and peri-cardial effusion, water pouring out my eyes from the dryness, pain in every limb -- I just couldn't take 1 more treatment. To me, if I'd not been on my supplements (against most oncs' advice) during chemo, I wouldn't be here. They all helped keep my ejection fraction at 50 (down from 65%), kept my immune system fighting, fighting off free radicals, blah, blah. And Herceptin (the "easy" chemo) became my long term chemotherapy. After 10 yrs, I took the chance of going it alone, just me, my Spirit, and God. My fav onc always says, if God-forbid I needed H, I can always return. Steph is very brave moving forward w/the new vaccine. Now, I'm thinking... 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...