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Taxotere

WHIZZER78
Posts: 52
Joined: Mar 2019

Heard back from the oncologist today.  They are going to switch me to Taxotere since I’m reacting to the Taxol.  Anyone have experience with it ? 

EZLiving66's picture
EZLiving66
Posts: 1371
Joined: Oct 2015

I had Taxotere from the start along with Carboplatin. I have severe neuropathy in my feet, my tongue and my left eye. My index and thumb on my right hand are completely numb. I also have permanent bald spots in my head, no left eyebrow (no big deal) and after all my fingernails and toenails fell off, some did not come completely back. I suffer from chronic diarrhea and liver damage. That being said, some people have had most of those results from taxol also. There is a class action suit against the makers of Taxotere because they didn't tell women about permanent hair loss. One of our ladies on this board is a part of it. 

I only made it through three chemos. I had a stroke - some bleeding in the brain caused my very high blood pressure, and my GP stopped the chemo. She told me she doubted I would survive a fourth treatment. I agreed with her.

All that being said, MOST women do not have those problems. My oncologist's PA told me I was their poster girl for what could go wrong during chemo.

Good luck!!

Love,

Eldri

WHIZZER78
Posts: 52
Joined: Mar 2019

Did the chemo cause the stroke ???   I read about the hair issue, but that’s the least of my concerns at this point.  I had one round of Taxol but kept reacting to it the second round.  So I will have two rounds of Taxotere , if I can handle it.  

EZLiving66's picture
EZLiving66
Posts: 1371
Joined: Oct 2015

The chemo caused my blood pressure to spike into the 200+/180+ range. The day of my third chemo it was 220/180. I must have had a weak spot on some blood vessel in my brain and with my thin, hard-to-clot blood, some seepage occurred into my brain. The damaged spot is not very big and my physical therapist and the occupational therapist said I had to make my brain "uncomfortable." It would not like being uncomfortable and it would reroute itself to make it comfortable again. They put these goggles on me that were hooked to a laptop. Then she made me do things with them on like turning to my right, to my left, bending over, lying down, etc. all so they could see if the dizziness was caused by my ears or my brain. It was my brain. Then they would make me do things like stare at buttons on a string and then move them around. Stare at a white X in the middle of a big checkerboard and move my head back and forth - all very uncomfortable for me. I had to do those things at home between sessions. I had an adult coloring book and between sessions, I was to color a page and date it. I was ambidextrous prior to chemo but I'll never be able to use my left hand like that again. The color books let me see the progress I was making as the feeling came back into my hands from the neuropathy. The physical therapist worked on my foot and arm that had gotten weak and started to turn inward. My left foot would drop when I walked so I was tripping and falling. 

The Cheesy Queen also had a stroke but hers was a blood clot one. It was also caused by the chemo.

Hope this info helps.

Love,

Eldri

CheeseQueen57's picture
CheeseQueen57
Posts: 843
Joined: Feb 2016

Yes I had a stroke during chemo. The chemo caused a-fib which caused the stroke. I looked back in my notes and in June 2016 I had told my oncologist I was having palpitations at night BUT NOBODY LISTENED!  A month later I had a stroke!  Fortunately it was mild and just caused expressive aphasia and I still have some residual effects which is highly frustrating for me- especially  arguments with my husband!  It led to a year of frustration trying to regulate Coumadin (never really was successful) And lifetime blood thinners. I’m on Eliquis now. Don’t ignore if you have any irregular heartbeats while on chemo. 

janaes
Posts: 787
Joined: May 2016

I did 3 rounds of toxal and caused neropathy so i was swirched to taxotere. It didnt cause any neropathy. I didnt get any of the permenant hair loss. I did get nausiated with taxotere where i didnt with taxol. I was glad i used it because if i would have stayed with toxal i woul have had to live with worse neropathy. Its different for others but it was good for me.

WHIZZER78
Posts: 52
Joined: Mar 2019

Thanks for replying....nice to hear the good stories too. 

MAbound
Posts: 936
Joined: Jun 2016

It's in the same family of drugs as Taxol, so you lose nothing in effectiveness by being switched and some of us just seem to tolerate it better than Taxol. The neuropathy pain I was dealing with from just that first dose of Taxol was enough to make me not care about whether or not my hair came back if it meant I had a chance for the pain to not get any worse. Be sure to still keep your hands and feet cold during infusions.

I had no problems with my nails from it, but I kept my hands out of detergents and other chemicals like furniture polish during chemo. I also was careful about sun exposure because I read that those things can cause a reaction with the Taxotere. I put a nail conditioner with Vitamin E on my nails, too, and my nails were actually never better.

Eldri's right, she really did hit the jackpot for bad reactions compared to most of us.

The only hair that didn't come back for me was in my armpits and my legs! Don't miss it at all!

WHIZZER78
Posts: 52
Joined: Mar 2019

Thanks for the tips.  Personally I don’t care about my hair if this kills the cancer.  Not shaving would be awesome and I have plenty of baseball hats to cover my bald head. 

WHIZZER78
Posts: 52
Joined: Mar 2019

I’m so stressed about starting a new chemo...my mind won’t stop spinning.   I’m more nervous about Monday than I was my first treatment.   Ugh 

Red Corvette
Posts: 107
Joined: Jan 2016

All completely normal for you to be stressed out. Try

and remember that very rarely do our worst fears come to pass and be sure to try and ice your hands and feet before and during treatments. Worked for Mrs. Red with no neuropathy. Good luck on Monday, you’re part of this terrific group of strong warriors.

Red

WHIZZER78
Posts: 52
Joined: Mar 2019

Thank you for the encouraging words.  My anxiety is trying to get the best of me. 

barnyardgal
Posts: 241
Joined: Oct 2017

When I had to switch treatments because of allergic reactions, I was scared as well. But it all went fine. It's normal to worry. We'll be thinking of you.

WHIZZER78
Posts: 52
Joined: Mar 2019

Thank you 

Armywife's picture
Armywife
Posts: 348
Joined: Feb 2018

Whizzer, I want to encourage you!  I'm the poster child for taxotere success, and my heart hurts for our beloved Eldri, because she has been through such difficulty.  But please know there are good outcomes too.  My first chemo was taxol and carboplatin, and I ended up hospitalized on Day 3 with aFib/RVR and severe acute onset neuropathy in my arms and legs.  My heart issue resolved itself but my oncologist said we were done with taxol.  I was so worried about just continuing with carboplatin - would it be enough? Could I live with the neuropathy that was so disabling I couldn't walk properly or hold things in my hands?   Miraculously, every bit of that neuropathy disappeared before the second chemo. The oncologist said sometimes when it comes so fast, it goes away too. When it comes gradually, it normally stays. My second chemo was carboplatin only.  Treatments 3, 4, 5 and 6 were carboplatin and taxotere.  I iced my hands and feet during each infusion, and I have zero neuropathy.  My hair came back totally, including legs, armpits and eyebrows and lashes.  I never lost my sense of taste during chemo, and though there were a few days each cycle that were really tough, for the most part chemo wasn't nearly as bad as it could have been.  Nails stayed healthy as well.  You can do this, girl!!

WHIZZER78
Posts: 52
Joined: Mar 2019

Thank you so much .... I need to hear these good stories.   

janaes
Posts: 787
Joined: May 2016

Whizzer78, i want you to know you are in my prayers. The worrying is normal. You do your best and thats good enough. 

WHIZZER78
Posts: 52
Joined: Mar 2019

thanks ! 

Molly110
Posts: 31
Joined: Oct 2019

This thread is very helpful for me.  I have papillary serous endometrial cancer, and after two taxol/carbo cycles, my neuropathy is such that my oncologist wants to switch me to taxotere, which is less toxic than taxol in terms of neuropathy. I am frighented by the much more numerous and severe taxotere side effects and am especially concerned about permanent baldness and permanent edema.  I used the cool mitts and socks for my second cycle (didn't know about it for the first cycle). At this point, I'm trying to weigh quality of life with effectiveness of treatment or, more accurately, I guess, trying to decide which of the adverse side effects I fear the most.

 

janaes
Posts: 787
Joined: May 2016

My doctor switched me from taxol to taxatere after 3 treatnents because of my neropathy. Im glas i switched. My nerooatht had gotten to the ball of one of my feet. My hair still came back. Taxotere did cause more nausia and i did feel sicker during treatment but in the long run i was okay with that because afrer 3 years i still have the netopathy in my foot so im glad it didnt get worse. Of course the nausia went away after treatment. Si taxatere worked for me. I know people are different but it was good for me.

Molly110
Posts: 31
Joined: Oct 2019

Thanks for responding. I'm sorry your neuropathy is still with you, but happily it sounds like otherwise you're good.

In terms of the common taxotere side effects, I know I can cope with nasuea if I have to, but I'm less sure about edema, which sounds like it can be pretty debilitating. So far with the taxol, the main thing has been the neuropathy. The rest has been so minor that it hasn't risen to the level of a bad cold in terms of misry. I thought that with chemo all I would have to do is suck it up and hang in there; I didn't antiicpate needing to make any decisions, which I guess was foolish of me. 

Thanks again.

 

Jairoldi's picture
Jairoldi
Posts: 220
Joined: May 2017

After 3 treatments my hands and feet were a bit numb and tingling so my doc switched me to Taxotere. My hair is a bit more thin but it was very thick to start with so most wouldn't know. I worried about not using the first choice chemo and my positive margins. All is well 2 years later.

Molly110
Posts: 31
Joined: Oct 2019

Thanks for the info. I am a newbie to cancer, so I don't know what positive margins means. It's great that all is well for you two years out. I have been second guessing my decision to do chemo, but my kind of endometrial cantcer is nasty, so it seemed like the right thing to do. I'm lucky to have a wonderful gynecologist/oncologist, and that has been a blessing. He assured me that taxotere is every bit as effective as taxol and that the reason he doesn't start with it is the typically more severe side effects.

Thanks again.

EZLiving66's picture
EZLiving66
Posts: 1371
Joined: Oct 2015

Hi Molly! Welcome to the club nobody wants to be a member of. I had (have) UPSC like you and my doctor started me on Taxotere along with Carboplatin right away. That was four years ago. I only made it through three chemos and then it was stopped because of the side effects. I have some permanent bald spots in my head and my left eyebrow never came back but it's pretty easy to hide. Another lady on this board lost all of her hair permanently. I have neuropathy in both feet and it is very painful. I also have it on the left side of my tongue which causes me to choke easily and in my left eye. I also have constant diarrhea. My oncologist/gynecologist's PA told me I was the poster girl for what can go wrong when you're going through chemo.

BUT, that being said, after four years I have not a recurrence! So, was it worth it? I guess so because I'm alive and there's no way to know if it was the chemo or not. Knowing what I know now, I'd still do it again. After my cancer, we sold our business of almost 30 years, retired and moved to Florida. I have a wonderful life here and my husband and I love the Florida lifestyle. There is nothing certain except death so I'd roll the dice again. Good luck!!!

Love,

Eldri

Jairoldi's picture
Jairoldi
Posts: 220
Joined: May 2017

A positive margins is when they find cancer cells at the edges of the surgical cuts. The try to leave a margin of cancer free area. My surgeon got everything he could see and left a margin but the sneaky little cells were found on the edges during pathology. Basically it means they didn't get everything. That made chemo and radiation even more important because the cancer wasn't  all removed.

Molly110
Posts: 31
Joined: Oct 2019

Thanks for the explanation of the margins, Jairoldi. I had a basal cell carcinoma along my jawline last year, and I my dermatologist explained the margins thing to me, but I'd forgotten that. I met with the radiologist this week about bracytherapy, and he explained to me that they want me to have VBT because they never know if they got all the cancer even when it appears that they did. I'd asked him what it means when people refer to this cancer as one that often "comes back," and he said that it basically it's either there or not after surgery; it's just a matter of whether they know it or not.  

UPSC -- is that the abbreviation for papillary serous endometrial cancer? It terrifies me to have this kind. 

Thanks again.

Armywife's picture
Armywife
Posts: 348
Joined: Feb 2018

I began chemo with Taxol and Carboplatin.  Three days after my first chemo, I developed acute onset neuropathy that was so debilitating I couldn't walk or use my hands properly.  The next day I went into RVR and aFib.  I was hospitalized and my gyn/onc decided the next chemo would be carboplatin only. My neuropathy disappeared as quickly as it came before the second chemo.  After that chemo, I asked if the single agent was strong enough and she offered me taxotere.  I took it for chemos 3-6, and I am here to tell you that it was not bad.  I never had any nausea - was given nausea med with infusions and a prescription for one at home and never needed it. I iced my hands and feet faithfully during every infusion and have zero neuropathy since then.   ALL of my hair came back, brows and lashes too. Zero edema.   I never even lost my sense of taste - was able to eat and enjoy anything and everything during chemo.  I had my last chemo two years ago and am waiting now for the results of my PET scan yesterday.  Please know that not everyone has all of the side effects of these drugs.  I know I am extremely fortunate and I thank God for that.  I just want to encourage you that there are good results too.  My sister-in-law had taxotere for breast cancer and she did just fine too.  Blessings to you!

Molly110
Posts: 31
Joined: Oct 2019

Thank you, Armywife, for telling me about your experience. (I also went and read your intro.) My assumption about chemo going in was that it would just be some tough times that I'd get through and then it would be over. I expected to do/experience the same thing most women do.  However, that has not been the case. I have had a number of reactions to the taxol that my brilliant gyn/onc described as "rare," although the only one that concerns him is the very early neuropathy. It started right after the first cycle and continued to get worse every day, rather then improving before the next cycle, which is apparently more typical. After the second cycle, it continued to get worse, despite my use of the elasto gel mitts and cooling slippers. That's why he wants me to switch to taxotere.

 

However, I learned something from the two cycles of taxol -- my body doesn't like the taxnes, and I have no reason to think I wouldn't also have rare/uncommon reactions to taxotere (since I had them to taxol) including permanent baldness and permanent severe edema. It heartens me to hear that your experience was positive, and I know mot women, by definition, don't have the rare side effects. My gyn/onc told me that he has never seen permanent baldness from taxotere and supposed it was possible, but not very likely, which makes me think there hasn't been much about that in the literature, other then the couple of studies mentioned.

 

I think of taxol as the devil I know. On the recommendation of my onc nurse practitioner, I'm trying accupuncture and have had three sessions in the past 7 days. I'm doing two a week until my next chemo cycle next Friday. The result has been amazing. The neuropathy is completely gone from my toes and the balls of my feet (where it was only mild). What gives me hope is that for the first time since the first chemo, my fingers are feeling better every day. It had gotten to the point that by 3:30 every day at work, all I wanted to do was go home and not use my fingers. This week, after the first two accupuncture sessions, I've had the same mild level of numbness all day long. My gyn/onc is letting me skip a taxane for my third cycle next week and only do the carbo, which will give us more time to decide what to do.

 

My hope is that between now and then my fingers will continue to improve so that I can go back to/stay on taxol. I am awed and humbled by reading the stories of so many of the women here who have endured with fortitude so much more than I have. But that is not me. There are some things that I do not want to risk. It's hard to weigh all this, since so much of it is speculation  or data based on "ordinary" (don't know the right term for it) endometrial cancer rather than the kind I have.

Thanks again.

 

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