Weekly Taxol for Stage 4

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  • Pimpom
    Pimpom Member Posts: 3

    Hi everyone!

    Glad to have found this thread!

    Starting on weekly taxol for bone mets tomorrow. A bit apprehensive since I had taxotere (3 cycles over three weeks each) as a part of my adjuvant therapy two years ago and I had quite a lot of bone and muscle pains along with other SEs. Anyone else that has done both?

    I'll read up a bit more on the thread later and get to know you! I'm overseas in Sweden/Europe and need to get to sleep! Already past midnight here!!

    Lots of love to you all

  • pinkninja9560
    pinkninja9560 Member Posts: 178

    pimpom,

    when I was first diagnosed in 2014, I did taxotere, carboplatin, Herceptin and perjeta. It was brutal 😂 Just found out a few weeks ago I have mets to both lungs, both kidneys, one adrenal gland, my liver and some bones. I started weekly taxol last week and every 3 weeks I'll have Herceptin and perjeta too. I'm er/pr- and her2+

    The taxol was much easier, I still had some side effects but not like taxotere. I'm having my 2nd infusion tomorrow too. Drink tons of water. Good luck

  • Pimpom
    Pimpom Member Posts: 3

    Hi Pinkninja

    Thanks for the reply and sorrry to hear of your recurrence. I was also initialy diagnsed in 2014 - seems like we could have gotten a few more disease free years until it came back - huh? Hope your second round of taxol has been okay. Great to hear that taxol was gentler on you than taxotere. I do know what you mean when you say it was brutal :)

    I'm fine so far, taste buds starting to act up a bit and a bit more stomach action than usual but no real problems.Guess I'm still not off pre-med steroids so don't know if I'll hit a low tomorow. I had steroids (called betapred here in Sweden) together with some anti-histamine and rantindin for acid and also works togheter with anti-histamines I believe and was given them all prior to taxol infusion. No meds to take today or further on unelss I have nausea, constipation or acid problems. What pre meds do you receive?

    Bye for now

  • pinkninja9560
    pinkninja9560 Member Posts: 178

    pimpom


    I get pretty much the same pre meds as you. I feel so much better than the first round! They give you a heftier dose the first round so that's probably why I don't feel as bad. My first round was taxol, Herceptin, perjeta and zometa for the bones. I'm her2+, er/pr- So that's why I get the other stuff. I had the worse migraine after first infusion and was in bed for 2 days! I hope your next few days are easy. I use Biotene dry mouth rinse and toothpaste to help with the yucky, metal mouth feeling. There's another homemade mouthwash but I can't remember what it was. Maybe someone can chime in here how to make it.
    Will you get Zometa or something for your bones? I also have some mets to some bones.
  • Groovywilma
    Groovywilma Member Posts: 47

    I'm joining this club! This is my first chemo where I will lose my hair. After six years with MBC, I think I am mentally prepared for it (who knows, maybe I'm not?). Anyhow, I've read through parts of this thread and am already learning a lot about what to expect. Looking forward to sharing experiences with others. Thanks!

  • Groovywilma
    Groovywilma Member Posts: 47

    I started Taxol on 4/21. My pre-meds included lots of decadron (some before bedtime the night before, some at breakfast before getting the infusion, and some included in my IV), kytrel, benadryl, and pepcid. The taxol they said is usually a one hour drip, but since it was my first time they slowed it down just to make sure I wasn't having any negative effects of it. I had quite a bit of energy later in the day (I wonder why? All those steroids?) but I took benadryl at bedtime and was able to sleep pretty well. Had some good energy the next day. Now I will see how day 3-4 goes, when others report these are the "rough" days. I'll keep you posted!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Yes, the energy is the steroid high. You might as your doc whether more Benadryl is the best thing for sleep on infusion day.

  • catsteme
    catsteme Member Posts: 26

    Hello all. I've just posted in the Hercepting / Perjeta thread but then found this one, so apologies for repeating myself...

    I've just had two second opinion appointments and both consultants recommended that I start Herceptin, Perjeta and weekly Paclitaxel. There is a slight difference in the regime they are recommending and I'd be really grateful for your thoughts.

    Consultant 1 says 18 weekly doses of Paclitaxel with H&P every third week. After 18 weeks, drop Paclitaxel and continue on H&P indefinitely.

    Consultant 2 says 3 weeks on Paclitaxel and 1 week off (with H&P every 3 weeks). The Paclitaxel would be continued until progression or SEs get too bad.

    Would really appreciate anone's thoughts on this.

    Many thanks

  • Groovywilma
    Groovywilma Member Posts: 47

    Thanks, ShetlandPony, I did follow up with the nurses to ask about Benadryl at bedtime to help me sleep off the steroid high and they said it was OK.

    Today I did my 2nd Taxol infusion. I feel like it is going pretty well. The past week I closely monitored my side effects and found that fatigue was my main culprit. I was hoping to have a little more energy during the week, but I am just trying to read what my body needs and do lots of self care and prevention. I realized that I do need to be more physically active just to get myself moving around more. Probably not doing me any good lying around too much.

    My hair has been coming out quite a bit already. I think for me, the stress of my negative experience with Navelbine and then starting taxol last week just expedited the hair loss. I have it very short right now (I've worn my hair short for the last 20 years, so I'm not suffering as much as women who have enjoyed long hair styles) but it is thinning in that weird way that looks funny. I have to admit, though, it's kind of fascinating to see my hair go all wacky. I've always had very thick straight hair. Going to look for some fun wigs for when I go out. Today I had a black bandana with skeletons on it! Not typically my style, but it's what I had handy! And you know what, I think I rocked that skeleton bandana today. Haha!

    Catsteme: I'm sorry I don't have feedback for you on your situation. I'm new to this treatment, and not on the others that you mentioned. I hope you were able to make the best decision on what route to take. Best of luck on your treatments!

    Healing hugs to everyone! Have a wonderful weekend!

    W

  • Groovywilma
    Groovywilma Member Posts: 47

    Bumping this thread for HelenFaith!

  • LindaE54
    LindaE54 Member Posts: 1,379

    Joining this thread. Had my first Taxol tx today. 3 weeks on, 1 week off is the plan. Premeds included Decadron, Benadryl and Zantac. Taxol infusion lasted one hour. Decadron might be stopped after a couple of infusions if all goes well. I have 2 rx of anti-nausea meds if need be.

  • incognitomom
    incognitomom Member Posts: 80

    Hi Ladies,

    I'm back on weekly Taxol after a couple years of just targeted therapies and pill-based chemos in between. I always had side effects of muscle and joint pain two days after treatment before, but this time around they have me take Gabapentin and it has been a godsend. This time on Taxol is easier than my first- really no aches or pains- so please let your doc know if you are suffering and see if they can help. I toughed it out the first time, but now wish I said something.

  • Mzmerz
    Mzmerz Member Posts: 80

    I found out today that Faslodex didn't do anything for me in the first few months, and so now I am on to Taxol. I had a good solo 2 hour drive home, and made my plans. Stopped off at the WalMart and got new hair scissors, and hair coloring. I planned on a lovely pink, cuz I didn't like the look of the purple! But my hair was too dark, so it's a funky copper color, but heck, it won't be around long. My mom chopped off my hair. I curled it and my kids said I looked like that old mom from the Goldberg's LOL. There's 6 of them, and I HATED telling them that something I started 4 months ago didn't work.

    I will be getting a port placed this week. I had a port in 2009 but it was removed because my onc told me "you will never ever have cancer again". I wanted to punch him in the face when he told me it was in my bones back in 2012. Then I am on to 3 on/1 off, I guess forever.

    I'll be reading back thru the posts to see what I should be expecting, but I expect Chemo is chemo, like riding a bike, you don't forget, except the bike is a really really crappy bike!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Mzmerz, you may find that weekly Taxol is a more comfortable bike than the Cytoxan and Taxotere you had before. And maybe later you can go to back to endocrine therapy (perhaps Aromasin + Afinitor).

  • babs6287
    babs6287 Member Posts: 1,619

    Mzmerz. This Taxol is easier than the first go round. My only issue on it was the hair loss and I wish it would have worked longer!!!! I hope you get a very long run on it!!!!!

    Babs

  • LindaE54
    LindaE54 Member Posts: 1,379

    Mzmerz - Welcome to the weekly Taxol club. Like you, Fas did nothing for me during my very short run on it. I started Taxol last week and had my second infusion today. I dreaded chemo and never had any before (dx stage IV out of the gate). Other than a lot of fatigue for a good 2 days after tx, I can't really complain. I anticipated much worse but right now I have to say this is doable.

    Good for you on be daring with your hair!

  • keetmom
    keetmom Member Posts: 299

    Starring every 3 week Taxol Monday, went in to start Doxil had a full blown allergic reaction...after just a few drops....

  • LindaE54
    LindaE54 Member Posts: 1,379

    Keetmom - yeesh on that allergic reaction! Scary huh? Let us know how it goes with Taxol and wishing you a long ride on it.

  • keetmom
    keetmom Member Posts: 299

    It was incredibly scary, luckily my nurse navigator was talking to us and realized what was happening, stopped immediately, it had just hit my body...a bit jittery now from all the drugs .

    I have here lots of people who have lots of luck on Taoxl, thinking it will do trick...


    How soon did everyones hair loss start?

  • LindaE54
    LindaE54 Member Posts: 1,379

    I will be starting cycle number 2 next week and haven't lost it so far. Nurse said after second or third infusion usually but doesn't seem to be the rule of thumb. Only a mere13% don't lose their hair with Taxol.

  • keetmom
    keetmom Member Posts: 299

    Linda are you weekly or every 3 weeks?


  • LindaE54
    LindaE54 Member Posts: 1,379

    Keetmom - I'm weekly for 3 weeks and then 1 week off.

  • LindaE54
    LindaE54 Member Posts: 1,379

    Looking for some advice please. I've been pretty miserable with severe mouth thrush and sores lately. I know Taxol is one the causes, plus I had rads to neck and head area and have been taking pred/Dex lately, such a nice melting pot for mouth issues! The awful taste in the mouth from thrush combined with loss/change of taste buds with Taxol and nausea is making eating a real ordeal. I lost 5 pounds over the last month - although I'm pleased to lose some weight - this is not the way to go. I'm rinsing/swallowing magic mouthwash 4 times a day and seeing some improvement in thrush/sores and taking Zofran for nausea. Just looking at food makes me nauseous. Any tips for me? Anybody else coping with this?

  • lulubee
    lulubee Member Posts: 903

    Linda, I have had some of these issues at different times through the years. It sounds like you are having a really rough time with it. I am so sorry and I hope you've found some relief this past week since you posted.

    There are two variations of magic mouthwash. One has a steroid in the formula-- that one worked for me. The milder variation without the steroid did not.

    I found some relief at times from holding cold yogurt in my mouth for a while. I've had taste changes with Taxol, but they come and go. The weirdest was the time fresh apple/carrot juice tasted exactly the way cheap gas station hand soap smells. I still can't figure that one out! Sometimes it helps to use lemon-- in my water, sprinkled on my food-- just seems to reset the taste buds a bit. Lemonade and limeade are helpful with meals. Maybe not so much with mouth sores, though! Sometimes I find that the only things that taste relatively right are spicy foods. For the mouth sores, it really helps me to take a lysine supplement and a probiotic. Hang in there and please let us know how you are doing.

  • LindaE54
    LindaE54 Member Posts: 1,379

    Thanks Lulubee. I can so relate to the weird tastes - have yet to experience the hand soap one lol! My magic mouthwash has a steroid. I've seen a good improvement over the last few days but not what I would like it to be. Thanks for the tips and I will certainly look into Lysine and a probiotic. How are you doing?

  • lulubee
    lulubee Member Posts: 903

    Glad things are trending up for you, Linda, and I hope it continues.

    As for me, I am just trucking right along with the weekly Taxol and trying to make the most of the good days each week. Otherwise, though, I'm having a stressful summer so far. It's house issues-- three major water leaks, and there are contractors all over the place because we have had to basically rebuild the three affected rooms from the ground up. My family has been living in a hotel for a month so far with at least another week to go. Life has been utter chaos since around April. But hopefully the contractors will all clear out in the next couple of weeks, and then I have a couple of weeks of intense tidying up to look forward to (the dust everywhere is unbelievable!)... and then maybe I can sit and sip lemonade for a bit.

    Life is good but it can sure kick your sweet patootie at times.

  • LindaE54
    LindaE54 Member Posts: 1,379

    Oh my gosh Lulubee! Let's hope the contractors will be out of there on schedule!

  • mashahinda
    mashahinda Member Posts: 3

    I have had stage 4 metastatic breast cancer since March 2012,and doing remarkably well, enjoying life.

    The next treatment offered to me is Taxol. I have seen very mixed reports about side effects for this chemo--from baldness, fatigue, tingling of the fingers (all fine with me), to extreme muscle and bone pain, extreme abdominal cramps, terrible finger and toe pain, tinnitus, and more.

    I don't know what to believe.

    My situation is that I will not be getting better, so any chemo I'm on will prolong my life, but not cure me. I don't want to live as an invalid or in pain, so I'm trying to figure out whether Taxol will be a horror for me in my dying stages. If so, I'd prefer dying without the Taxol.

    Can anyone comment on this? Can anyone tell me, in other words, how bad your experience was with Taxol and if you knew there'd be no end to it, that this would be the end of your life, would it be worth it to you?

    Thank you,

    mashahinda

  • babs6287
    babs6287 Member Posts: 1,619

    Mashahinda

    For me Taxol was relatively easy. I lost my hair had and slight tingling I would take it again if it could prolong my life!

    Babs

  • mashahinda
    mashahinda Member Posts: 3

    This is good to hear. Very helpful to me after I've heard from people who've had a difficult time with Taxol.

    Thanks so much for responding.

    mashahinda