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Old 10-26-2011, 07:14 AM   #1
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Very nervous

Yes Cool. I didn't know all you posted after the first post. Got with your gut, your Inner Voice. Of course you're anxious, but be calm and assertive and follow the advice above.

I also remember my onc telling me -- NO MATTER -- WHAT YOU ALWAYS GET HERCEPTIN. In '98 it was given weekly. It was years later that I was able to switch to the triple dose every 3 wks.

Explain to the person who answers the phone, in a calm but urgent manner, the way you would speak to a friend. It generally gets me what I want.

Prior to my orig dx I was pushing for a mammo. Nothing for 2 wks. I called back, explained firmly, and was told -- You're not going to believe this, I JUST had a cancellation! Go for it, Cool...
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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...
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Old 10-26-2011, 07:58 AM   #2
michka
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Re: Very nervous

Hi CB. I understand how you feel but your liver needs to heal a little.
I was on Herceptin+Tykerb before the operation and my liver parameters were normal.
I always stayed on Herceptin. I stopped Tykerb 10 days before (which I believe was too short). I started Navelbine, and restarted Tykerb about 1 month after the operation. It was really tough for my digestion and for my liver. It took months for my liver parameters to come back to normal and I didn't feel well at all. I believe chemo hit hard on the liver. I stopped Navelbine end of September and only my last blood tests last week showed normal parameters.
But I am not an onc. If you feel good and your blood work is good, then you should really discuss chemo with your onc. You will feel better. But don't worry too much. Even if you only see your onc on the 9th you will still be on track.
Hugs. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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