Taxotere is a nightmare

LRM216

Tracie -

God speed - I know only too well how you are looking for this to be over.  I was exactly where you are now with side effects, and then some.  I HATED Taxotere, I literally thought I was dying - and then I wished I was dying.  I could NEVER go through that drug again - ever.  Like you, everyone told me "piece of cake" next to A/C.  A/C was a horror too, but not nearly as bad as taxoterrible.

I wish you nothing but the best, and look forward to when this will just be a nasty memory for you.

Linda 

mrsnjband

Traci,

I agree Taxotere is the worst!!! They switched me from Taxol to Taxotere it was MUCH WORSE than Taxol.  I've heard that some doctors are using Abraxotan instead of the T drugs. You might ask for this one.  I'd never do Taxotere again.  

I had to use the Scopolamine patch to help with the dizziness. It's used for motion sickness for cruises.  It was a life saver for me. (Hubby used it during his chemo that's how I knew about it.)    I still have to use it, but I'm not sure it was a permanent SE for Taxotere or because of my anemia.

Sending love & prayers. NJ

tracie23

Ok ladies ..I ended up in the Hospital Thursday afternoon with a non existent blood count and an infection. Today is Monday and I just got home. Missed Christmas with my family my 9 year old was crushed but my counts are back up and the infection is in check... What a night mare... it was awful I had the chills so bad you would have thought I was have seizures... the infection ended up being a UTI. I had to have round the clock antibiotics. If you are starting Taxotere you may do great with not one problem but I would as your doctor a million questions.

Good luck to everyone.

Tracie

marjie

Tracie - So sorry to hear you ended up in hospital but I am glad you are out and feeling better.  That has been my pattern through every chemo treatment so far....I just had my first Taxotere on the 22nd so I feel like I am just waiting for the axe to fall.  They have never been able to find a source of infection for me so I just get blasted with antibiotics and last time had a blood transfusion as well.

It's horrible but I just try to think of everything as one more step to being done...still crappy to miss Christmas with the family but I bet they are happy to have to home now

Get lots of rest.

SAMayoFL

I just finished A/C on December 15 and start Taxotere once a week x 12.  I wish I knew the difference between Taxol and Taxotere but reading the posts here scare the crap out of me.  Sometimes, I want to run away and forget all about chemo!

Susan

imbell

My first Taxotere tx put me in bed for a month with mourth sores, thrush, sores all around my genitals, thumb and big toe nail eventually fell off but at least I didn't have the neuropathy like with Abraxane. I suspect my dose was too high on the Taxotere and I may be allergic. Weekly Taxol would have been better.

zenith4289

I just finished taxoterrible and agree it was way worse than AC.  Why the onc and np said it would be "easy" i'll never know!  I am still dealing with neuopathy in fingers, toes, horrible bug spray taste in my mouth, dry watery eyes, fatigue, muscle and bone pain.  i didn't get neupogen but did have newlasta.  I just have to make it through the next 14 days and then i hope most of the SE's will be gone.  I am 57 and am wondering if postmenopausal women have it worse on taxotere? 

ktym

Tracie,

I've stopped telling people what happened to me on taxotere, just scared them too much.  My Onc stopped pretending the neuropathy would ever get better a while back.  Just gave me referrals for help with the pain.  I did have to chime in regarding the comment you said they made about it being a cake walk after AC.  They thought that 3 yrs ago.  If someone is still telling you that I'd have to questions how much they have been involved in giving it.  Although, coming from Houston I would think you're hooked up with someone who does this a lot.  I think sometimes they tell us hopeful things like that because they're hoping mind over matter will mean we psych ourselves into a better place.

The original studies showed less nausea and got around the heart failure problem of adriamicin.  My Onc said at a few national meetings lately people have talked about the problems they're having with taxotere and wondering why it is so much worse in "real life" than the original trials.  I've thought about going back and seeing how many of those trials received drug company support or had a history of funding to the investigators involved.  Then decided I really didn't want to know.  As a group my Oncs are now telling people that AC and TC are equally hard, but, the side effect profile is different and it is a matter of some more at risk for cardiac toxicity, and some neuropathy etc.  I see this on the boards here sometimes that holdover of the old idea TC is a softer kinder drug combination.  That is pretty outdated thinking anymore.  Everyone metabolizes the drugs differently.  Some will have more problems with AC some with TC

I've spent a lot of time reading about and trying to recuperate from this drug.  The only caution I would give regarding the steroids is this, upping steroids seems to help with the flu symptoms in some people, but, has also been blamed for worsening myopathy in those 5% who get it with this drug.  More have problems with flu symptoms than myopathy so upping steroids is a trade many are making, just be aware to watch out for it.  

tracie23

Hi Kmmd, You would think being in Houston it would be different but I have seen a handful of oncologists and they all said the same thing... I think they say the Taxotere is easier only because you don't have the nausea. I even asked the infusion nurse after my chemo treatment what to look for ( I read all the SE and had friends that went through so I knew what to expect) and she said to me " Oh no you will be just fine" I have chemo again on the 6th I don't even know what to say about that, I think I may run away LOL

LadyinBama

Susan: Please don't let us scare you off. I had more SEs on taxotere than on FEC, but nothing that couldn't be dealt with. Just be sure to let your doctor know about any problems you are having, no matter how minor. I was tempted to ignore some things, like teary eyes, that turned out to be an easily treatable SE. The less aggravation we have to put up with, the better. Like someone else said, we all metabolize drugs differently, so you will have your own set of SEs, and hopefully, it won't be too bad. I'm 3 weeks PFC and feel pretty good.

marjie

Some of these posts can definitely be pretty alarming when you are just starting out but for me, I read everything, good and bad, then at least I have a good base of information.  When SE's start to show up, at least I'm not surprised.

Kate - you are right...everyone metabolises these things differently.  I think there are very few "text book" cases.  My onc kept things upbeat and positive...I had such a hard time with FEC that she is hoping I just "sail right through taxotere" with no problems.  You could tell she was trying to keep my spirits up, lol, but who knows!  Had a few bad days and I know I'm still just at the beginning so we'll just keep moving forward and hope for the best of the worst!

tracie23

Susan , ladymbama and Marjie are right don't be scared away everyone is different like I said before I have 2 friends that did Taxotere and they never had one side effect and they are also right in telling your doctors everything that happens no matter how small. I am so greatful for all the good the bad and the ugly postings on Taxotere it gave me something to go off of and I was able to ask a ton of questions about it. The best thing about this sight is we have each other and we can let it all out .

Fighter_34

-The trick is you have to REALLY drink water not the 8 glasses recommended for normal people but like 20 glasses to flush it through your system.

-Gargle w/ the magic mouthwash often, even the day of treatment and about every hour there after it does make a difference. Swallow a little if your throat is sore.

-DRY SKIN boy it will dry your skin out use a heavy creamy lotion that hydrates the skin, and put on a sunblock because it will darken your skin if expose too much sun.

TonLee

I'm sitting in the chemo chair right now getting Texoterrible #2.  Can't type much...gotta get my fingers back in the peas

The drip is making my stomach burn tho...as soon as it started...

TonLee

I'm sitting in the chemo chair right now getting Texoterrible #2.  Can't type much...gotta get my fingers back in the peas

The drip is making my stomach burn tho...as soon as it started...

tracie23

Good Luck TonLee

Paula1231

Hang in there Tracie!  Are you feeling better?  I asked my onc about the Taxol/Taxotere and she said they were equally effective.  I found this study as well:

Researchers affiliated with the Eastern Cooperative Oncology Group (ECOG), the Southwest Oncology Group (SWOG), the Cancer and Acute Leukemia Group G (CALGB) and the North Central Cancer Treatment Group (NCCTG) recently reported results that both Taxotere (docetaxel) and Taxol (paclitaxel) following AC (Adriamycin®, Cytoxan®) result in similar outcomes in the adjuvant treatment of breast cancer. Furthermore, taxanes administered once per week or once every three weeks were equally effective. These results were recently presented at the 28th annual San Antonio Breast Cancer Symposium (SABCS) in December 2005.

AC followed by a taxane is a commonly used adjuvant therapeutic regimen for the treatment of localized breast cancer. Research continues into comparing Taxotere to Taxol in its efficacy, as well as different scheduling of administration of these agents.

The ECOG E1199 trial that was recently presented at SABCS included nearly 5,000 women with node-positive or high-risk node-negative breast cancer who received four cycles of standard AC, and were randomized to receive one of the following: Taxotere once weekly or once every three weeks; Taxol once weekly or once every three weeks. Overall, no significant differences were noted at 4 years.

• Taxol every three weeks: disease-free survival (DFS) was 80.6% and overall survival (OS) was 88.8%
• Taxol once per week: DFS was 83.5% and OS was 91.8%
• Taxotere every three weeks: DFS was 83.1% and OS was 89.3%
• Taxotere once per week: DFS was 80.5% and OS was 88.9%

Grade III and IV adverse events occurred in 30% of patients treated in the every three week Taxol arm, 28% of patients in the once per week Taxol arm, 71% of patients in the every three week Taxotere arm, and 45% of patients in the once per week Taxotere arm. There was more febrile neutropenia and infection in the every three week Taxotere arm.

The researchers stated that the trial's data monitoring committee allowed early release of these results as there appeared to be no likelihood that these numbers would change with longer follow-up. Ultimately, it appears that either Taxol or Taxotere, either on a weekly or every three week schedule following AC result in similar outcomes in women with node-positive or high-risk node-negative breast cancer patients.

LtotheK

I had a moderately difficult time on Taxotere.  I expect a lot when I feel good, and a week after treatment was just kind of a mess for me.  Flu-like symptoms, and a very toxic feeling I can't quite describe.  I will say this, though, if it helps you feel better.  From what I've read, Taxotere is harder in the short run, easier on the body in the long run.

I am a huge proponent of L-glutamine for neuropathy.  I was the only gal prescribed it in my group, and I was the only one who avoided it completely.  Perhaps coincidence, but a number of these gals are having trouble 6+ months after chemo.

thePuppetLady

mph70, I can relate to that toxic feeling, good way to describe it.  I've had 4 hits of Taxotere and Cytoxin, 2 to go and so far, have been able to manage it fairly well.  I get the fatigue, flu symptoms, super stiff neck, heartburn but I'm still pretty functional,  I feel guilty when I read how some of you are suffering through this----know that it's not forever...ellen

LtotheK

Oh goodness, yes...the heartburn.  One night we called the ER thinking I was having a heart attack. That'd be my next big piece of advice, get on Prilosec ASAP!

As for different degrees of suffering, I'm pretty sure of one thing:  none of us gets out unscathed.  Some may tolerate the drug better, then have other SEs from radiation, etc.  My big beef is that it's all primitive science still.  Slash and burn.

annadou

Taxotere is the bully -I got nail infections in all the nails as they all raised up -had to cut them down to the nail base to get rid of infection-now they are perfect. I did use ice on them but it was too late as I had had the first Rx before I found out about it .

Claratyne (Claratin) antihistamine helped me a lot with all those flu like symptoms-I took it for 3 days before and after.On the upside there was no sickness.I took Neurontin for the numbness  and its ok now .

Good luck to you all and keep strong

Anna

thePuppetLady

ack, I forgot about the hives!  Anyone getting those?  It started about a week after my third treatment and thought I would lose my mind.  Onco wasn't sure it was chemo related but I've never had them before.  She prescribed Benadryl and when they get too bad, I take one of my steroids--knocks them back pretty quickly....ellen

LtotheK

Oh yeah...hilarious that I really am starting to forget that horrible experience this past summer!  Well, that should be GOOD news to those still in it.  I got hives and called my husband bawling that we had bed bugs.  They looked EXACTLY like BBs.  We'd had them before, and I felt like the universe must be one unfair spot if someone going through chemo would also get bed bugs.

I will say this, I feel really tremendous these days.  I'm 3+ months PFC, healthy weight, feel good, and really, besides the warm/hot flashes, have nothing wrong with me at this time!  The important take away is your suffering now doesn't mean suffering later.  It will end!

Adey

MHP70-- "and a very toxic feeling I can't quite describe", that is so true.  I call it the worst of normal (or the swamp) because I just can't explain it.  I also agree with the L-Glutamine, ice on fingers and toes and ice chips or smoothie for your mouth.  I am on T(axotere)A(driamycin)C and so am getting two strong ones at the same time but it really is doable and my SEs have been less than many (touch wood).  I have been taking claritin and pepcid every morning since I started chemo (100 days today).  I also take many supplements because I go to an integrative onc.  My last tx is 1/04/2011.  Don't be afraid.  We all are different.  If you can, try to anticipate the best, hard sometimes I know.  The best of luck to all.

dlcw

Hi All - hoping to get some wisdom from this group re: how you chose TC over AC/T or other protocols.  I am currently doing a neoadjuvant trial with Carboplatin/Gemcitibine/PARP inhibitor.  This is an 18 week study (if I show progress and stay in the whole time) at which point I'll have surgery, and then do a more normal adjuvant chemo.  The doc running the study recommends that regardless of response everyone do adjuvant chemo as there are no long term survival data for the carb/gem/parp.  So, I was thinking I'd just go ahead and do the dose dense AC/12 weekly T afterwards (which frankly scares me as I've been reading about SE's).  The onc at Stanford suggested I consider CT (Cytoxin and Taxotere).  Wondering what led you guys to that protocol - at dx I had an approx 6 cm tumor, 4 positive nodes (on MRI - one was confirmed via biopsy). So, I am at least a Stage IIb or IIIa.  My original pre-study onc did not suggest TC, only DD AC/T.  Thanks for any insights you guys can offer as you all have already gone through the decision process!

Also - I am so sorry to hear the SE's some of you are having to deal with - this disease, and it's treatment - sucks!  But someone pointed out that it does end and we will feel better and that's what I'm trying to focus on!  Wishing you all a good day with minimal SE's.

Dlcw

Cinders57

Scary! I have had 4 A/C treatments and one Taxol - had reactions (they think) to something in the Taxol (I couldn't breath- couldn't swallow - racing and flip flopping heart) Sent me to ER to check for blood clots and stroke but found nothing. They were thinking of switching me to Taxitere but after hearing that I am not so sure! I hope you do better with your next treatments! I wish I had something more positive to submit but I just wanted to wish you well!

tracie23

cinders57 I am asking my onc today if they will spread my dose out over 3 weeks I think getting like that is much easier on your system. I hope you are doing well. I know it is a freaky thing to go through. I wish you well

Leah_S

Cinder, when I had taxol every treatment started with phenergan - an antihistimine - because allergic reactions to taxol are fairly common. If you're tolerating the taxol otherwise you might ask your onc about this.

Best of luck.

Leah

ktym

MHP70, good point on the gluamine, I threw the boat at it.  Maybe others can add in, but, things I was told to try with the taxotere to help with neuropathy:

complex B vitamin supplement, glutamine, carnitine, Co-enzyme QA, I'm forgetting a couple, it has been too long.  None of them did much for me, but, they have helped others. 

ktym

One more thing, I'll add to the others about the few getting ready to start, don't be scared off.  Everyone is very different.  Some have trouble on AC, some on TC.  The fluids help, soup, pudding, fruit, things with fluid since drinking that much water can be hard to do if you are nauseated