Scary Taxotere Stories - HELP!!

Cathytoo

Starting TC In a few days. I was told by my MO that this was a well tolerated chemo. But, I've been reading horror stories about T side effects that have me scared to death. I'm triple negative and must do chemo, but I really need some reassurance.

Briergal

hi, I'm triple negative also. I just finished 4 rounds of AC chemo. I am starting taxol chemo on Friday. I will have it every 2 weeks for 2 months. Then I will have a mastectomy. Is taxol the chemo you are scared of

scrunchthecat

I had six rounds of Taxotere. It was not too bad - the worst side effect was fatigue that got worse as I progressed through treatments. (It's cumulative.) I also had a bout of GERD after treatment 4. I took one two-week round of Nexium, and then just switched my diet to smaller and fewer meals of essentially bland food. The GERD went away. I also worked during all of this. The first three rounds were not bad, the last three were more challenging. Good luck!

PS: I have a very mild case of neuropathy in my feet, I think because of Taxotere. It does not hinder me. However, I have read here that you can ice your feet and hands during treatment to avoid/minimize neuropathy.

ksusan

I had 4 rounds of Taxotere. While I had some side effects, they were manageable. It may help to read the other TC threads, bearing in mind that unless specifically asked, people tend to report negative effects and not report inconsequential experiences.

ksusan

To be fair, I was warned.

Cathytoo

I asked my MO about permanent hair loss with Taxotere. He said it is documented that this did happen a few years ago but not since

lisa137

I did four rounds of taxotere.

My hair actually started growing BACK during my taxotere treatments (it had fallen out during the adriamycin rounds.)

Worst side effect was roaming pain; first it would hurt HERE, then THERE, then someplace else, and yes, it got worse each round. Pain meds knocked it right out, though, and if I recall correctly, it was only a few days each round that I had the pains, anyway. So ya might want to be prepared for that.

Otherwise...yeah, it's chemo. It may or may not give you digestive symptoms of one kind or another--seems to depend on the person. It'll most likely make you feel sort of like you have the flu--that fatigued "leave me alone because I'm not getting out of bed" feeling.

I do have some mild neuropathy-- just a little numbness -- in my toes, and an even smaller amount, barely noticeable, in my fingertips. My toes and the bottoms of my feet were worse in the months--well, the year, actually--after treatment, but now it's not really a big deal. No pain from it, just the slight numb feeling, although for some reason, if I stub my toe on something it actually hurts way worse than it used to, so the numbness is sort of an illusion, lol.

So yeah...not fun, but not scary, and no horror stories here.

KBeee

I had 4 rounds of TC and tolerated them well. My biggest issue is that my (former) MO did not think I was at risk of neutropenia and did not give me Neulasta or test my blood counts when I started running fevers. That landed me in the hospital with a neutropenic fever. This is avoidable with Neulasta or Neupogen. I had Neulasta after that and did fine. I felt "ick (just like I had the flu) from days 3-5, but felt good other than that. The most annoying thing for me was my taste. Everythign tasted nasty. It is very doable.

octogirl

I had four rounds. The worst part was losing my hair and my MO did *not* warn me that there was a small chance the hair loss would be permanent. When I found that out, towards the end of chemo, I freaked out. However, I was never able to ascertain what the real percentage is, per the research, because it isn't looked at much (if at all) and nearly all of the evidence appears to be anecdotal as far as I can tell...However, while my hair was slower than some to come back, part of which may just be my impatient perception, it is definitely coming back! Yay! If I had to do it again, I'd still do the chemo, though I might have thought longer about cold capping.

My MO gives neupogen or neulasta to all of his patients doing chemo, as a matter of course. Honestly, that seems like a better practice to me. Since I lived quite a distance from his offices where chemo took place, they prescribed neupogen in five shots given (by my hubby) in my stomach after each infusion (the drug was delivered to my door by messenger, already loaded into the needle devices, and the Neupogen patient asst program paid all but $15 per round of the portion that insurance didn't cover...including shipping.). It sounds like a shot every day for five days would be awful, but with hubby to do it it was fairly painless, both literally and figuratively) especially once hubby learned the tip that one of MO's nurses told us: it hurts much less if you warm the needle device up in your hand for a bit before administering....and I did feel a LOT better and WBCs stayed in a good range the entire time.

MO asked me after I was done what the worst part was: answer: losing my hair. Second worst: I was tired a lot. and food tasted crappy (taste buds back to normal now). I was never really nauseated (maybe a touch of morning sickness that went away if I ate a piece of toast as soon as I got up in the am) and no GI problems to speak of. Oh yeah, and I had a love/hate relationships with the steroids: loved them for the first day each round, after that the insomnia got old. I worked straight through, only missed a few days. LOVED the productiveness, or perceived productiveness :-), on steroid days.

Bottom line: it is scary. But you can do this. Hugs to you.

Octogirl

ksusan

I'd do taxotere again in a second if I needed to. My SEs were all manageable and the bad part of chemo for me would just be feeling under the weather for so many weeks.

MsPharoah

Hi, echoing the comments of others about TC. I had 6 rounds of TC every 3 weeks. I had the infusion on Tuesday, Neulasta shot on Wednesday. I worked through chemo. I missed the 6 infusion days, did my Neulasta shot on a lunch break. The first treatment was a "non-event". I felt a little weird and had some insomnia, but wondered what all the fuss was about. As the treatments progressed, i was increasingly fatigued, had some bouts of thrush, a rash, diarrhea, some nausea, but it was all manageable and hats off to my MO and her nurse for helping manage the side effects. Each treatment after the first, I would have a few days when I felt like I had a bad flu, but once that passed, I was fine. I did miss 2 additional days of work due to fatigue. And like others, losing my taste buds was a big issue for me. I lost about 15 pounds on chemo. I was fortunate that my MO encouraged her patients to keep as normal a schedule as possible. I think focusing on something besides chemo helped me a lot. The only regret I had was that I did not push for a port. With 6 treatments, my poor veins were fried.
Good luck with your treatment. As I always said to my Onc before chemo...."Let's go kill some cancer!"
MsP

Cathytoo

Thanks so much, everyone for your great responses. This is such a great site to connect. Only a few more days to go! Hope it's an easy journey. But, I have on my "big girl underpants" and I'm ready. Again...thanks

Artista928

I completed 4 rounds of AC and started Taxotere 3 weeks ago from this Tues. I have 4 rounds of it total, so 3 to go. Next infusion is this Tues.

The first round was easy. I can't even think of any SEs to note. With AC I had nausea issue most of all. My MO told me Taxotere is easier to tolerate than Taxol. She did say I could lose my hair for good and since I have androgenetic alopecia (female pattern hair loss) that I most likely would. But what can you do. Hair vs doing what an MO you trust tells you to do to beat it. One thing I do like about no hair is no maintenance issues and my body temp is so much cooler! I have/had naturally wavy/curly hair that was a pain to get to look good. Then the thinning started and started getting worse, so I'm pretty sure that the 1/3 of buzz cut I have left on my head will be gone and I won't get enough back if I get any to be able to do a style of any sort.

Kathy044

Food tasted blah, I lost 25 lbs, T must have reset my metabolism as nearly six years later the weight never came back and remains at pre menopause level. Kathy

lintrollerderby

On the subject of Taxotere and permanent hair loss: I was not warned of the risk; however, my hair did--thankfully--return and quite quickly. Though, I'm 4.5 years out and STILL have chemo curls. While the hair on my head did return, my eyebrows are absolutely nothing like they were pre-chemo. I used to have very thick and full brows, to the point that I'd have them waxed and shaped every few weeks just to tame them. Now, I have to pencil them in. Also, the hair on my legs is just friggin weird and I don't know what to make of it.

I have permanent neuropathy in my feet. I also have a few other issues from chemo, but I've complained enough.

33triple

Hi ladies I came across this link on the cold cap thread : http://www.taxoterelawsuits.com looks like a class action lawsuit is in the works.

Artista928

I've seen the commercial on the lawsuit. Having hairloss pre chemo, I don't see how this could be won. I could easily claim Taxotere but how can you prove it's that and not something else, like alopecia areata? I see these lawyer commercials all the time where if you experience this (medical problem) by this, call now! Another thing, Taxotere and Taxol are both taxanes and basically the same thing. So it'd be interesting if this actually gets somewhere. But I have my doubts.