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Old 12-21-2007, 02:38 PM   #1
PinkGirl
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Smile

Hi Hermiracles
I'm going to check with Andi about how she
gets her herceptin. I remember she posted
once about having it mixed differently. I'll
find out, maybe it's something you can ask
about.

Good luck with the treatment. Sounds like the
pre-meds and slower infusion is a good thing to
try.

You know you can always post more pictures of those
babies - we all love seeing them.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
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Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 12-21-2007, 03:05 PM   #2
Andrea Barnett Budin
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Wink Hermiracles

Pink has sent me in to help. Glad if my experience can be of benefit.

I began Herceptin in Nov '98!! -- wkly, as it was hot out of clinical trials and fast-tracked by the FDA for us *needy* ones. 4th stage metastatic -- Vit H has saved my life. I stayed w/the wkly dosage given over 30 min... And then...

In 2000 my onc told me studies had been done in France and I could switch to the ev 3 wk plan. I was leary. Tempting though it was not to go ev single wk! Why fix what isn't broken?, and will those who do new regimen survive?? I told my marvelous onc MJ, Let's have this discussion in a yr. A yr later, I was assured that follow up studies showed no change in efficacy of H given the *new* way.


I began w/a loading dosage of 4X single dosage over 2 hrs. Gradually, infusion time was reduced. 1 1/2 hrs. 1 hr. Then, 30 min. I am fine w/this, as is my body. It is a party, ev 3 wks and in and out in an hr overall, when I don't have an onc visit that is.

WE ARE EACH DIFFERENT. OUR BODIES REACT DIFFERENTLY TO THE SAME DRUGS. I AM PRAYING YOUR BODY, HERMI (IF I MAY CALL YOU THAT FOR SHORT) WILL CATCH ON AND ADJUST, ESPECIALLY W/PREMEDS AND A SLOWER INFUSION FOR YOU.


I think it is important to mention -- I have my Herceptin in a 500 cc saline solution, vs the standard protocol of 250 cc (sometimes in benzol alcohol or whatever). This *pure* form -- and double saline
-- helps lessen side effects, I have learned!

I felt woozy and wobbly the one time a new pharmacist gave me a 250 cc bag. I questioned it right off but was assured it was according to standard protocol. However I found out -- my body said, Whoa... I like the other way better. So listen to your body, dear Hermi!

Hope this is helpful. And that antihistamines and whatever they give you will be better for you. Come to think of it, when I began H in Nov '98 I had been on Taxotere for 2 mnths and continued w/the two till the end of May '99. At that time (my beginning w/H) I was on Dexymethazone the day before and the day of, for the Taxotere. That is a steroid, and may have helped have less side effects with the H in addition to the Taxotere. Something to think, and/or ask about...

I don't know your protocol, you may already be given that. Will be thinking of you and praying for a great response.

Andi
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'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 12-21-2007, 11:21 PM   #3
hermiracles
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Thanks Maryanne, Pinkgirl and Andi

Thats interesting what you say Andi about the Herceptin being given in 'benzol alcohol'?? I think of myself as a (sober) alcoholic (haven't had a drink in 19 years) so I' much rather have it in saline than alcohol! I will ask them on Monday when I go for my (slow!) infusion.

Thanks ladies ♥ ♥ ♥ ♥ ♥ ♥ ♥
Blessings
Hermi
PS Andi ~ love your new photo!
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2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
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Old 12-22-2007, 07:47 AM   #4
tousled1
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Herceptin reconstituted with Sterile Water

I want to clarify the reconstitution of Herceptin since I have mine reconstituted with sterile water. Because of this I must have my Herceptin every 3 weeks since they would have to discard the unused portion since they receivce the Herceptin powder in a 3 weeks dose. If you can get your insurance company to pay for the reconstitution with sterile water on a weely basis more power to you -- my insurance company wouldn't authorize it as it meant money going down the drain. I also recevie my Herceptin with a bag of saline water on the side.

This infomration is directly from the Boxed warning:

The doctor's office recives the Herceptin in powder form. Each vial of Herceptin should be reconstituted with 20 mL of BWFI, USP, 1.1% benzyl alcohol preserved, as supplied, to yield a multi‑dose solution containing 21 mg/mL Trastuzumab. The reconstituted preparation results in a colorless to pale yellow transparent solution. Parenteral drug products should be inspected visually for particulates and discoloration prior to administration. Reconstituted Herceptin must be discarded after 28 days.

Use of diluents other than BWFI should be avoided unless contraindicated. For patients with known hypersensitivity to benzyl alcohol, Herceptin must be reconstituted with Sterile Water for Injection; discard any unused portion

I hope this information helps.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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