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Andrea Barnett Budin · 10-15-2015, 07:57 AM

Yes, Steph, it was my plan to stay on Herceptin for the rest of my life (when I recurred in 1998 a month before the FDA fast tracked H out of clinical trials to make it available to all metastatic bcers). I stayed on for 10 years. Been off since 2008. All good.

I heard talk a while back that we should stay on for 5 yrs. That 5 was as good as 10. But I was most comfortable at 10. 4th stage throughout the liver was a very scary place to be. I was told what I had was INOPERABLE, INCURABLE AND THAT I WOULD BE ON LONG TERM CHEMOTHERAPY FOR THE REST OF MY LIFE.

Well, after 9 mnths of Taxotere, I couldn't take any more. Peri cardial effusion, pleural effusion and more... And with just H I did great.

My first three years on H -- I went WEEKLY! That's how it was done at first. In France they switched to triple the dosage every 3 wks but when my doc told me I said, I'm going to wait a yr, to see if they all live, seriously, and then I'll switch. And they lived. And I switched. And then I lived! Every week for 3 yrs chemo. WOW. My husband came with me to every one.

I did get to meet Dr. Slamon in the early 2000s in Santa Monica at UCLA. I was seeing Dr. Pegram. Slamon was no longer with him in practice, devoting all his time to research. But I heard he was in the building and I announced I AM NOT LEAVING TILL I MEET HIM.

He came into the exam room in 2 minutes. I stood on the step of the exam table (dressed) in short heels and we were practically nose to nose. I threw my arms around him and said the unbelievable words -- THANK YOU FOR MY LIFE. We hugged for a really long time, good and tight. When I looked at his grinning face I realized he was as thrilled to meet me, a SURVIVOR b/c of all his hard work and devotion to getting this to women, we just reveled in the joy. Paul, my hubby, was also on his feet and they shook hands happily, pumping away. I did thank Dr. Pegram too. Slamon said he was a part of the team too. He was a bit shy and was exiting the room, but we all insisted he stay.

Dr. P continued our visit with my it seemed 500 pages of medical history his assistant had thoroughly reviewed prior to our meeting. We talked for a good while and he said at that time there were no answers as to how long to stay on H. You are in uncharted waters he said. And so I was. I just kept following my Inner Voice. I felt great, had STABLE STABLE STABLE CTs ev 3 mnths, then ev 4 mnths CHEST ABD PELVIS and was so so so glad to be alive. My 2nd dghtr got married. Grandkids were popping up. (I'm now up to 5.....!!!!!) Next March Paul and I will be married 50 yrs. Life is so sweet.

Paul and I left feeling we had seen Elvis!

Please see my article in a new thread Pinkie managed to post today. The Sun Sentinel here in Fla has been publishing a LIFE'S VICTORIES series throughout October and today I was honored to have my story and pic appear -- hopefully to touch and inspire many out there facing some pretty scary stuff.

Light and Love, my Sisters... Andi

10-15-2015, 07:57 AM	#27
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: Invited to a talk by Dr Slamon. Yes, Steph, it was my plan to stay on Herceptin for the rest of my life (when I recurred in 1998 a month before the FDA fast tracked H out of clinical trials to make it available to all metastatic bcers). I stayed on for 10 years. Been off since 2008. All good. I heard talk a while back that we should stay on for 5 yrs. That 5 was as good as 10. But I was most comfortable at 10. 4th stage throughout the liver was a very scary place to be. I was told what I had was INOPERABLE, INCURABLE AND THAT I WOULD BE ON LONG TERM CHEMOTHERAPY FOR THE REST OF MY LIFE. Well, after 9 mnths of Taxotere, I couldn't take any more. Peri cardial effusion, pleural effusion and more... And with just H I did great. My first three years on H -- I went WEEKLY! That's how it was done at first. In France they switched to triple the dosage every 3 wks but when my doc told me I said, I'm going to wait a yr, to see if they all live, seriously, and then I'll switch. And they lived. And I switched. And then I lived! Every week for 3 yrs chemo. WOW. My husband came with me to every one. I did get to meet Dr. Slamon in the early 2000s in Santa Monica at UCLA. I was seeing Dr. Pegram. Slamon was no longer with him in practice, devoting all his time to research. But I heard he was in the building and I announced I AM NOT LEAVING TILL I MEET HIM. He came into the exam room in 2 minutes. I stood on the step of the exam table (dressed) in short heels and we were practically nose to nose. I threw my arms around him and said the unbelievable words -- THANK YOU FOR MY LIFE. We hugged for a really long time, good and tight. When I looked at his grinning face I realized he was as thrilled to meet me, a SURVIVOR b/c of all his hard work and devotion to getting this to women, we just reveled in the joy. Paul, my hubby, was also on his feet and they shook hands happily, pumping away. I did thank Dr. Pegram too. Slamon said he was a part of the team too. He was a bit shy and was exiting the room, but we all insisted he stay. Dr. P continued our visit with my it seemed 500 pages of medical history his assistant had thoroughly reviewed prior to our meeting. We talked for a good while and he said at that time there were no answers as to how long to stay on H. You are in uncharted waters he said. And so I was. I just kept following my Inner Voice. I felt great, had STABLE STABLE STABLE CTs ev 3 mnths, then ev 4 mnths CHEST ABD PELVIS and was so so so glad to be alive. My 2nd dghtr got married. Grandkids were popping up. (I'm now up to 5.....!!!!!) Next March Paul and I will be married 50 yrs. Life is so sweet. Paul and I left feeling we had seen Elvis! Please see my article in a new thread Pinkie managed to post today. The Sun Sentinel here in Fla has been publishing a LIFE'S VICTORIES series throughout October and today I was honored to have my story and pic appear -- hopefully to touch and inspire many out there facing some pretty scary stuff. Light and Love, my Sisters... 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...