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Cathy
04-04-2004, 11:04 PM
Ladies,

I just finished my 3rd round of theses 3 drugs, with herceptin on 2nd and 3rd weeks inbetween. It appears to be working (I am thankful to God) and I wondered if you could give me a heads up about symptoms. My onc. seems to feel it's better to wait to see what I experience then just warning me ahead of time. First he told my I would be only doing the heavy dose for 3-4 cycles. Now he says I can go 6 months (ARG!) and then do herceptin for an additional 6 months. I prefer to know what "might" happen and then not be worried that it's the cancer that's causing the symptoms.
I did AC last year (I'm er-/pr-, her 2/neu 3+, with mets to liver, bones, lymph, and pleura).
Cathy

Jessica
04-05-2004, 01:54 AM
Hi Cathy-
Jessica here (from Profiles in Courage).So glad to see a post from you.I've read both of your posts and I'm a little confused by your oncologist!Everyone's experience/response to tx is a little different, but I find it really unsual that you onc isn't sharing all the available info with you re:potential side effects.You MUST be involved in EVERY aspect of your treatment and your healing, so you should know everything available.Fortunately there are so many of us here that are able to share our experience with you.
I was on 3 different tx combos,totalling 49 weeks of chemo, but it was Taxol/Herceptin weekly x 14 weeks before NED(yipeee!)and continue on weekly Herceptin.I plan to stay on Herceptin as long as they plan to give it to me.As far as side effects of Taxol-peripheral neuropathy, low rbc&wbc & hair loss, ofcourse.But w/Neupogen & Procrit & wigs, I managed w/minimal toxicity.W/Herceptin, I still experience flu-like symps w/every infusion,but take tylenol for that and all is well.
Just an idea...have you heard of "dose-dense chemotherapy"?Many of us followed dose-dense regimen-that is weekly tx or once/every 2weeks vs. once/3weeks.New data shows more frequent tx has slightly greater efficacy & some minimized toxicity.Ask your onc or you could find more info here or on susanlovemd.org.
Hope this info is helpful.Please feel free to contact me directly if there's anything else I can do.
Take good care & keep the faith,
Jessica

Patty H
04-05-2004, 07:41 AM
I am on that combination. I also take it two weeks on and the last two weeks just herceptin and zometa. I have lung and bone mets. I have been taking it since Dec. and I haven't lost my hair by taking it like this. It has thinned quite a bit but not enough I need a wig yet. The only other side effects I have had is for a couple days after the chemo I feel like I have the flu and just kind of icky and I'm a little tired. But it is much milder by taking it this way. Also on my first scan after two months I had a 20% shrinkage of the tumor in my lungs. Patty H

Cathy W
04-05-2004, 08:41 AM
Thank you for the info. I am a little confused about "dose dense" (I'm getting denser with each chemo treatment...). I got a "front-loading" dose of everything the first week (I KNOW they told my husband I had a short time if this didn't work--it did). At first my onc. said they'd do 2 or 3 3-week cycles (week one T/C/H, week two and three herceptin). When my CEA, CA29-29 and CA125 tests came back significantly down last week(CEA down 49%--it was 3000 -yes that's three thousand!) he said he was going to keep me one this regimen for 6 months if possible and then go to weekly herceptin only for another 6 months. I haven't found any literature that discusses becoming "immune" to herceptin. I don't want to play "Russian roulette" with my life and am trying to gather info. I actually contacted Dana-Farber/Harvard to check on clinical trials today. They called back but I was indisposed :) (intestinal chemo upsets...)
I will question him, and I will continue to seek info. You ladies are a great help! I just finished reading the book "The Making of Herceptin". Very interesting. Does make me want to shoot just about everyone except the courageous ladies in the trials! (and maybe Dr. Slamon..)
I do like my onc. and from what I've read he is using the newest chemo for my situation. But I like to know what to expect ahead of time. He knows I'm not a hypocondriac (I had a pleura effusion that literally took up my whole right lung capacity and I told him I thought maybe I was imagining the pain in my side because my PCP didn't find it with a CT scan!)
It is good to be part of this support group. I really thought I was a "goner" two months ago. But it helps to talk to others in my shoes.
Thanks, Cathy

Tanya
07-27-2004, 01:58 PM
Hi all
I'm mostly a lurker - but find the site very useful. I'm about to start a triple combo: taxotere/carboplatin/herceptin -- have some questions:

Background:
I was dx at age 38 in Sept '03 straight to Stage iv - mets to supraclavicular node and to lymph nodes in abdomen. Started taxol/herceptin- switched to taxotere/herceptin because of lung nodules that were suspected mets. I've been on taxotere/herpceptin since Feb '04. Although some of the mets have resolved, my markers have increased and the mets in my abdomen lymph have not gone away.

My oncologist is recommending that we add carboplatin to the taxotere/herceptin combo. She recommended a three week on - one week off schedule. Here are my questions:

(1) My oncologist is recommending that the one week be "off" for everything including herceptin. Anyone done something similar? It seems that most of you do herceptin even in your "off chemo" weeks.

(2)Any experience with this triple combo that anyone can share. side effects? things to watch for?

(3) I've been kind of bummed about needing to try a different chemo combination. I'm afraid that it means that I'm not chemo responsive. Has anyone reached NED after trying several different combos.

Thanks in advance for any light you can shed on these issues. I'm the only stage iv, her2 positive gal in my "young women with breast cancer" support group. I appreciate having this site.

--Tanya

Kitty
07-27-2004, 10:24 PM
Hi,

I was on continuous weekly taxol/herceptin/carboplatin for 32 weeks to take care of liver mets. It actually worked for the most part in 11 weeks, but we stayed with it until the tiny residual scar like marks disappeared. Very easy to take on a weekly basis. I did not have 3 on and 1 off, rather this was continuous for 32 weeks straight. After probably 4 months on, I started receiving aranesp every 2 weeks for red blood count (although it never went really low). Anyhow I found this was the easiest treatment to go through. I worked fulltime (about 50 hour work weeks) throughout with no problems. Carboplatin is very good with herceptin and I am sure it will do the trick for you. Good luck.
Kitty

Lu Ann
07-28-2004, 09:26 PM
I just posted (tumor markers almost normal Lu Ann), if you want to read my post. I agree with the following persons post on being able to tollerate the treatment. The carboplatin might be what you are missing in the cocktail. Blessing to you and all.

eleanor
07-28-2004, 09:28 PM
Hi Tanya,
I was on the tax/carb/her combo in 2002 for 11 mos. 3 wks on/1 off, but no break with herceptin - received every week. I had almost immediate response. Within 2 mos my tumor markers were normal, in about 4 mos I was considered stable and a year later a PET scan was completely clear. I had complications and had to go off the drugs in 2003 but for the most part have been on herceptin off and on for the past year and have had no recurrance.
I pray this combo will work wonders for you.
el