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Andrea Barnett Budin · 12-21-2007, 03:05 PM

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

12-21-2007, 03:05 PM	#8
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	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 __________________ 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...