warning about TAXOL

It took three days for the sores to come, but then my mouth exploded! As soon as I called, they phoned in the RX, but I do wonder why they thought I might be the 1 in 1,000 patient not to get them.

Yes, I've got that book. Very useful information and well-researched. Unfortunately, there is a lot of contracdictory information on chemo side effects, treatment, etc -- even coming from the doctors' offices themselves!! Feels like a lot of trial and error.

I posted this on another thread, but I finally found out that the taxotere aching back lasts about 7-10 days after each chemo treatment. my doc recommends 30 mg of glutamine a day. I bought the powder from a health food store and started taking 10 mg three times a day. It's supposed to help prevent neuropathy too. Will let you know how it works after 2nd round of chemo next wednesday.

Hi Minniemouse,.,

Dear Steve, Hi my name is Tina, I am 53 years old and was dx with triple negative IDC on April 8th. I am currently on Chemo (adriamycin/Cytoxan) very two weeks for 4 rounds and then will start Taxol every week for 12 rounds. I am so scared after reading your post about Taxol that I DON"T want to take it at all! This is horrible, not only can the Cancer itself kill you but , so can the meds that are suppose to get rid of it? This sounds like a no win situation to me. I think I would rather take my chances with the BC than die from the medication. This is Crazy, don't they have ANY safe drugs for this? I am petrified to take this drug, I don't want to die!!!!!!!

Sunris, I hope your BRCA test come in negative!

bumped up for Kerry OK and Brad...

don't want to freak you guys out but the first infusion is extremely important...if possible, please make sure you have your heart checked out before the infusion, they give you the drug slowly and that if you feel weird please tell them to stop...

all the best,

Steve

Hi Ladies and Steve,

I did not go to a large well know hospital for treatments, but the town I live near has one of the best oncologists that money can pay for. He tells you everything, pulls no punches, is really on top of the game. I WAS LUCKY to be referred to him by my surgeon...

I had 4 bi-weekly, double dose infusions of taxol in October and November of 2006. I also had adriamician in August and September of 2006. I had a muga scan to check my heart before any treatments started and another one after the adriamician treatments ended. So they knew my heart was strong enough. I was given information on the side effects of taxol and knew it might be rough, but also was told that for the best results in my chemo regimen, I really needed taxol or taxatere.

The day of my first taxol treatment the nurse hooked me up to a blood pressure cuff, a blood oxygen count machine and checked my heart every five minutes. She sat right beside me and slowly administered the drug for the first hour to be sure all was OK. I was told to let her know of ANY symptoms that seemed out of the ordinary. I did not have any abnormal reactions. Thank God.... The next three infusions were administered in half the time since I had no adverse reaction to the first one.

I did have bone pain in my back and legs, neuropathy in my hands and feet,fatigue and low blood counts. You may think I was stupid and naive, but when my Oncologist told me that I really needed the Taxol I believed him, so I made up my mind to deal with the side effects. I did not have the chemo brain associated with A/C. That made it a little better. My hair, eyelashes, eyebrows and all other body hair was long gone before I started taxol, so that was no concern. Just kept wearing my hats and wig.

To this day I still have residual effects from all of the chemo... BUT, 3 years and 7 months after diagnosis I am still NED.

Girls, Pray for strength... Keep your chin up... Grit your teeth.... but if at all possible, take what you need to take to SAVE YOUR LIVES.

I hate cancer as much as any of you; but I got it so I have to deal with it.

Love in Christ...

Lillie

Hello Steve and Girls,

My surgeon told me I was triple negative. He ordered the FISH test to be certain. My oncologist told me I was triple negative. Initially I did not know what that meant except "red flags" went up when i was told I wouldn't be taking tamoxafin or herceptin. Everyone I knew with breast cancer took one of those drugs after chemo.

I also believe that "knowledge is power". In retrospect, my oncologist gave me the knowledge I needed to be prepared for the taxol. I was also part of a clinical trial (gymzar was added to my regimen). I will say that when you are participating in a clinical trial all the i's are dotted and the t's are crossed. (There is a lady whose sole purpose at that clinic is to be in charge of everything that happens to clinical trial patients). That could be some of the reason I was as knowledgeable as I was. (There was a Protocol for everything that took place during my 4 months of treatments).

Still, I was acting on Blind Faith... I had no TNBC site to come to and find out that there are others who've been there and done that. Kerry, Cristy, Brad and Scott; you do have this site and people sharing with you left and right. Let your doctors know that you are not in the dark and ask them to please "Give You The Knowledge" you need to get through this time and take the proper steps to insure success.

Steve: I am aware that sometimes all of these steps are taken and it is just not enough. It doesn't always work. In your daughter's and my situation it seems to be working, so we step out there as "beacons" for those who are just beginning the journey.

Does this make any sense?

Love in Christ,

Lillie

Steve and Lillie