Taxotere is a nightmare

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited March 2012

    Congrats Rachel! Sorry you had a bad reaction, and, of course you would have it your last tx.! Lucky you! LOL. Gotta laugh, or tests would drown us. Take care.

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    Yay Rachel!!!!!

  • rachelvk
    rachelvk Member Posts: 1,411
    edited March 2012

    Thanks to everyone. Other than being really zonked from the extra benadryl, I felt pretty good yesterday. Now I'm heading down the roller coaster as usual - Sat/Sun usually is when I start feeling exhausted. I expect this time around to be a longer haul, as they each have been.

    Linda - This is pretty much it for me. No rads (even though I had a bmx, I did ask my MO if there was any reason whatsoever to explore rads to be extra safe, and after looking closely at my file, said no). And being triple negative, no tamoxifen or arimidex. It was chemo or bust, and hopefully the ordeal of the chemo did the trick. 

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2012

    Rachel, I can understand doing full-blast chemo with triple-negative.  I am hopeful it did its job - you did 6 cycles?  I only did 4, and only 3 were TC, one AC because of the neuropathy, then had heart damage with first dose of AC (was told that is not usual) so MO said no more chemo available to me at my stage.  From what I have read and learned, rads does not prolong survival, it might decrease local recurrence, and if you have had BMX, you will probably find local recurrence quickly and it can be treated then, so you avoid any rads SEs.  You will be in my heart and prayers daily - I am so optimistic for you! 

  • Kelloggs
    Kelloggs Member Posts: 965
    edited April 2012

    Taxotere may be a nightmare but it was worth evey SE!  Just had a follow up PET and I had dramatic response to tx with complete resolution of all of my lung mets!  YAY!!!!!

  • tracie23
    tracie23 Member Posts: 598
    edited April 2012

    Go Kellogg Go Kellogg.... That is awesome!!!!

  • rachelvk
    rachelvk Member Posts: 1,411
    edited April 2012

    Kelloggs - Fantastic news! I'm so glad to hear that.

    I think I'm starting to round the bend. Two weeks pfc now. Fatigue, yes, some finger sensitivity. But I'm starting to feel like I'm moving ahead.

    Linda - Thanks for your thoughts. I've appreciated all the advice and encouragement from you and everyone on this and other threads.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited April 2012

    Okay, three weeks PFC and my legs are feeling like cement trucks, and the feet resemble puffy little pillows. Guess the party's not over for a while...

  • Omaz
    Omaz Member Posts: 5,497
    edited April 2012
    Hang in there rachelvk!  some women have used diuretics at times, perhaps that would help for a while.
  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2012

    Rachelvk, hang in there a bit longer. The last round is often the worst simply because you think it should all be over, but the effects are cumulative and may take a little longer to recover than the last one, and it just seems worse. So be kind to yourself, allow yourself to rest more, don't expect too much of yourself too fast (I give you this advice freely, knowing that there is no way I could follow it myself, LOL!). And don't hesitate to call you MO for help earlier rather than later!

  • lago
    lago Member Posts: 17,186
    edited April 2012
    rachelvk I too felt like Violet during chemo and a bit after but the fluid does go away eventually. All my shoes were tight except for 2 pairs. Even my PT saw how my jeans on my calves were tighter.
  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2012

    Rachelvk, hoping you are doing well.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited April 2012

    Thanks. Feet had gone down, but my left foot seems to be poofy again. But I am feeling so much better than last week. My left hand has some odd sensations, so I'm watching it closely, but not the outright tingling I felt a few times during treatment.

  • Alibobscam
    Alibobscam Member Posts: 1
    edited May 2012

    Aww Tracey, Ive just finished my last dose and its been horrid. Ive had 3 doses of FEC and 3 of TAX

    Ive been the same as you on the TAX, due to the 3 day steroids which start 24hrs before chemo is administered (to stop an anaphalactic shock!) on the Wednesday, Ive been high until Friday PM, when.... Ive sat down for a rest and barely been able to move for 3 days of flu like aching all over and feeling like I have lead boots on.

    Constipation like Ive never known in the first few days. 

    As soon as I started the chemo session, my taste sensation diminished each day for 4 days culminating in a sore, mouth with a swollen tongue covered in thrush and ulcers. The thrush lasted 4/5 days and  I had no tolerance of food or drinks during that period. Each day after that I could only tolerate tiny bits of food like porridge and vegetables but anything sweet tasted vile. I havent had my taste return normally in between treatments so that will be 3 months of not enjoying food!

    My eyes constantly water and my nose at times runs like a tap, making wearing make up and feelin better impossible. My nose bleeds when I blow it and have alot of  blood clots blocking my nose. This only happened on the 2nd and 3rd session for some reason.

    My fingers and toes have been so painful Ive had to take painkillers to get to sleep. My toenails are going black and coming away from the nail bed, ( 1 is infected) equally my fingernails are discoloured and have detached from the nail bed which is sore and unsightly. Very upsetting as Im a Beauty therapist and am self emplyed so have had to carry on working when possible and nails and runny eyes have hindered me greatly. Ive not worn shoes now for weeks only flipflops.

    Anyway, I had my last shot 17 days ago and although Im still suffering with my hands/feet/tongue, Im very pleased and proud to have got through it. My nails should heal, although it will take months. I cant wait to enjoy food again, its really had a bizarre psychological effect on me!

    I wish I could find out why I was on this and not the same as alot of other women have had that Ive met, 8 doses of the FEC which did make me feel more nauseous for a few days but apart from being tired and and having a metalic taste in my mouth, I could function properly and eat, workand socialise. Whereas with this TAX, Ive not been able to wear makeup or eat out or work easily. Ive just felt old and not at all myself.

  • Craftylass
    Craftylass Member Posts: 33
    edited May 2012

    Hi Ladies,

    I'll have my first Taxotere chemo the week of May 28.  I've completed four cycles AC.  I'm doing neoadjuvant chemo and after the first three AC cycles, my tumor had shrunk 60%!  They are expecting even more shrinkage with the Taxotere.  (I won't get the 4th chemo measurement until the 28th.)

    Quick question . . . the cortisteroid pre-chemo treatment . . . is that typically taken 24 hours pre-chemo or can it be 12 hours pre-chemo? 

    I live in China and commute (8-9 hours door-to-door) to Hong Kong for my chemo.  Long story.  I'm making my travel arrangements for this next cycle.  I will call my doctor on Monday to ask this question, but thought I'd get a general idea from you all first.  My husband wants to accompany me on the return trip since we are unaware of how I will respond to Taxotere.  (I typically return to my home the day after chemo.) 

    I received the Neulasta shot after each AC treatment.  Once we added Emend to the mix, I have had minimal side effects except for crushing fatigue the first four/five days.  I started taking doctor-approved glutamine powder right after my last chemo to help combat the muscle aches that can accompany Taxotere.  (I'm taking 10 grams a day and will increase to 30 grams a day the day before/day of/day after the chemo.)  I also take B100 complex vitamins and CoQ10 supplements.  This is all with doctor approval.  He has also approved my adding vitamins C, D and E (daily recommended doses, not mega dosing) when I start the Taxotere.

    Any ideas on the steroid timing? My pre-chemo appointment is 4:30 p.m. and my chemo is typically late morning/early afternoon the next day.  Will that be enough time to start the steriod?  (Under standard dosing . . . like I said, I'll call my doc, but it's hard to wait throughout the weekend to make plans!)

    Thanks so much!  

    Craftylass

  • Omaz
    Omaz Member Posts: 5,497
    edited May 2012
    craftylass - I took steroids the evening before and the morning of chemo as pills and then some more in the pre-chemo infusion. 
  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited May 2012

    craftylass, I took steroids only the day of chemo and for 3 days after, along with an anti nausea drug - I forget the name of it - never had pre-treatment like a lot of ladies here did. I had no problem with anaphylaxis or allergic reactions, but I sure had lots of problems with peripheral neuropathy (and still do). I also took glutamine starting after the first cycle, and continued it daily through the entire time. Not sure if it worked, or if it decreased the neuropathy, no way to really know. Good luck!

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited May 2012

    In the USA they do a lot more steroid dosing than over here in Australia and I'm not sure what way your Chinese doctor will go. Over here the only pre-dosing is couple of tablets 1/2 hour before the infusion starts then iv dex and something else (rinitidine?) before they start the Taxotere or Taxol.



    I was originally going to do Taxotere but it changed to Taxol. This topic still shows up in my favourites :-)



    Regards Jenn

  • rachelvk
    rachelvk Member Posts: 1,411
    edited May 2012

    Craftylass - I took the dexamethasone the morning and evening before, got it through IV right before my infusion, and then I took it again the next two days. It's good that your husband is coming with you. I was always fine the day of and after my infusion. It was day 3 when I started to feel tired and achy. But since we never know when we may have a surprise reaction, it's best to have someone along. What a long commute you'll have for treatment! Good luck.

    I'm 7 weeks pfc and the fatigue has really lifted a great deal. I still have some odd sensations in my fingers, but it hasn't gotten in the way of my violin playing or much else. I have peach fuzz on my head as well. So I think I'm seeing the light at the end of the tunnel. 

  • lago
    lago Member Posts: 17,186
    edited May 2012
    rachelvk it takes a long time for neuropathy to resolve. My NP told me though that if it hasn't gone away after 2 years then it isn't going too. I thought my left heel was finally getting better but a few days ago it went numb again. Still a bit numb today. At least it doesn't hurt. My concern is when I'm an old lady. I don't want the numb heel to effect my balence
  • Eileenohio
    Eileenohio Member Posts: 460
    edited May 2012

    My last chemo is at 10:40am this morning. I did not think I would ever reach this point. I have had minimal side effects so far. Treatment # 5 was my worst so far,fatigue and lots of tears from my left left only and a running nose from time to time. Annoying but not tolerable.    It is strange that my extreme fatigue did not hit me until day 10 after treatment #5. I literally slept for 2 days. Maybe # 6 will not be so bad. Power of positive thinking (lol). Next it is on to rads along with the herceptin.

    Wishing everyone a great day.     Hugs  Eileen

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2012

    eileen - congrats!!!  You made it!  I remember when you were so worried at the beginning, and now look at you!  I found that #6 was not so bad - I kept waiting for the SE's but they really did not come in full force - #5 was also my worst.  So happy for you!

  • rachelvk
    rachelvk Member Posts: 1,411
    edited May 2012

    Eileen - Congratulations on crossing the finish line! #6 wasn't easy, but for me it was the exhaustion more than any other SEs. From here on in, every day is day closer to feeling better.

    I'm almost 9 weeks pfc (wow! that sounds so long!) and my hair is about the length of a marine recruit, so I'm not complaining. I might consider going out in public in the next 3-4 weeks at this rate. Fingers are sensitive on and off. After my exchange next week, I'm going to look into acupuncture. 

  • Craftylass
    Craftylass Member Posts: 33
    edited June 2012

    I'm going to have to agree that Taxotere has been a nightmare!  I was fine for three days, but my entire sense of taste has changed.  On day four, I don't know if I got the jitters from the steroids or what, but I couldn't sleep.  I got two hours sleep a night for three nights and then experienced extreme pain.  I developed a fever (101.5) for sixteen hours.  Had to go on heavy antibiotics and injections.  Vomited a lot on day six.  Got another skin infection (this is the third one) due to broken hair follicles on my head.

    We're putting together a better plan for the next cycle.  This was not fun at all!  While I didn't like the nausea on AC, at least it was familiar!

  • lago
    lago Member Posts: 17,186
    edited June 2012

    crafty the first round of any chemo it tough because you don't know what SE you will get. Once you know you can medicate before it happens. The heartburn, constipation and back pain were the worst with tx 1 on taxotere. Once I knew when and what I treated before I had the issue. Vary rarely does one have vomiting/nausea that can't be controlled with meds. The ones you had obviously weren't the right ones for you. There are many different ones but other are more $$ so some MDs don't prescribe… be sure to demand something better!

    hang in there.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited June 2012

    Craftylass - Sorry you're feeling all the SEs. But it sounds like your MO wants to get on top of the SEs and get you better meds. Hang in there - and I second lago's advice about staying vocal when things don't work.

    One suggestion for taste buds: olive oil. It sounds weird, but I took a friend's advice and had a tablespoon of oil (swish then swallow) twice a day. I usually lost my taste for a day or two each cycle - longer after my final one - but it returned, and I've had no lingering issues. I wonder if anyone will ever look into that more officially.

  • Craftylass
    Craftylass Member Posts: 33
    edited June 2012

    Hi Ladies,

    Quick update . . . had second taxotere with minimal side effects!  I took pain relievers as prescribed (as opposed to only taking them as needed) and that kept the pain at bay.  We added claritin to the mix and the pain was MUCH less this time around!  I'd say the main side effect was extreme insomnia.  However, I was counseled to really work with my body . . . to stay in bed, even if I wasn't able to sleep . . . to allow my body to rest.  I did so and I think it made a big difference. 

    I am now a week past my treatment and I'm feeling good.  Mild pain, but I haven't taken anything today for it.  Hopefully, later this week my taste will return closer to normal as I'm tired of everything tasting bad.  However, I am still drinking 3 liters a day, so at least I'm staying hydrated. 

    July 11 and  August 1 . . . scheduled treatments!  Getting closer to the finish line and then on to surgery!

    Craftylass

  • rachelvk
    rachelvk Member Posts: 1,411
    edited June 2012

    Craftylass - Good to hear! I'm so glad they got you doing the Claritin. Makes a huge difference. Did you try the olive oil? Keep looking ahead to that surgery. How's the commute coming along?

    I'm now three months pfc and things seem to be getting better. The past week I've noticed no finger tingling at all. Still stiff when I go to stand after sitting for more than 20 minutes or so, but my energy and walking ability are about normal. And the hair is coming along nicely. I'm almost ready to go topless.

  • Craftylass
    Craftylass Member Posts: 33
    edited June 2012

    Rachelvk, olive oil is hard to come by where I am in China, so I didn't go looking for it (it's also extremely expensive here).  However, given the reduced side effects this go-round, I'm not going to complain.  Still have the nasties in my mouth, but I know those will start to fade at some point in time.  I went out and bought some little sourballs today and that helps.  I'm drinking my 3 liters a day so at least I know I'm staying hydrated!  I may try the olive oil trick once I'm back in the States.

    I've made my last trip to Hong Kong and will return to the States on the 3rd.  My first appointment with my new oncologist is the 5th. They've really been on top of things for me! 

    I have a very thick patch of peach fuzz.  I've always had fast growing hair, so it doesn't surprise me that it's trying to come in.  What's nice to know is that in a couple of months, I may even have a hairstyle.  

    I walk around bald all the time.  Can't be bothered with a hat or scarf or wig.  Just not my thing. 

    I've not had any finger tingling, other than from knitting.  Hope yours continues to improve.  Are you done with everything now?

    Craftylass

  • rachelvk
    rachelvk Member Posts: 1,411
    edited June 2012

    Craftylass - Hopefullly, yes. I had my exchange 3 weeks ago and it's working out well. The recovery has been pretty easy this time around. Interesting that your hair is coming in while you're still getting the Taxotere. I guess it's the other two that knock off the hair. I had all three at the same time, so I couldn't tell you what SE was from what! It sounds like you're handling the SEs pretty well, which is great. Keep it up.

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