Weekly Taxol for Stage 4

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  • Modum
    Modum Member Posts: 59
    edited May 2015

    Hi everyone,

    I just started Taxol a few weeks ago... 2 weeks on/1 week off (for as long as possible), so I guess I have finished my 1st cycle (?) or 2 chemo sessions...very confusing! : ) Iwas on Vinorelbine for the last 9 months but had progression in my liver. I was on oral stuff before that. So far so good as far as se's go, but it's early I know. Just getting my headwear situation under control for now and waiting.


    Wishing everyone a great night for now. I am new to this website, so I am also trying to learn how to navigate around as well!

    Take care!

    M

  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    Hi Modum. It's good to see your post. I start Taxol in about 8 hours. I've never been on iv chemo and am borderline terrified. I am loaded up with scarves and the things you can wear under the scarves to give more fullness and the little caps you can wear to catch some of the hairs that fall out at night so they don't end up all over my pillow, and head band things. I tried to have a good attitude about it, but now that I have all this stuff I hate it. Naturally.

    I have read that the worst day is 2 or 3 days after treatment. I get treatments on Monday, so I figure Wednesday will be bad days. Of course, I have several things planned for Wednesdays: a concert and cirque du soleil. Was this true for you? And how exactly is it bad? I'm mostly worried about having diarrhea on those days. I think that's a legitimate worry. LOL I will probably take immodium as a precaution. Of course, I do have a few treatments to go before those events, so I guess I'll have a better idea then. I know I'm getting way ahead of myself, but my anxiety is blowing me away. I should totally be asleep right now.

    What's this I've been reading about not eating vegetables during chemo? Were any of you instructed thus?

    I'll try sleep again.

    Oh, I know. What kinds of things did you enjoy doing during infusions? My mother will be there, but I can't imagine she will actually talk to me. She'll read or do puzzles. I'll have my phone for kindle or to message people.

  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited May 2015

    hi Modum and Dunesleeper. Welcome to the group. Everyone seems to react differently to Taxol so it's hard to know how things might go for you.

    I have been having taxol every week for over 18 months now and it's a pretty doable chemo for most. The effects are definitely cumulative. For quite a while I continued to work full time and exercise regularly, although after all this time I'm only working 30 hours a week and exercise is pretty non existent as I'm so tired. But it's taken quite a while to get to this point.

    You do get quite tired 2-3 days after treatment. This is caused by a steroid crash. You get steroids in your premed. I have had them reduce my dose over time and I don't have nearly the problem with it I used to.

    I find the infusion time goes quite quickly. It's not a long chemo. I either read or chat to others in the unit.

    Good luck girls. May you have a long and SE free run on Taxol.

  • Karz72
    Karz72 Member Posts: 160
    edited May 2015

    Dunesleeper, when my mom came with me we'd play a game of scrabble :-)

    When I'm on my own I read or chat to the nurses & other patients. I get a premed that makes me quite sleepy & I find if I read or exercise my brain with a game or puzzle I end up having a good nap for the second hour. Sleeping through treatment helps with my claustrophobia as really hate being stuck in one place!

  • Modum
    Modum Member Posts: 59
    edited May 2015

    Hi Dunesleeper, good morning ladies!

    Well first things, take care of yourself and things should go well. I was on IV Vinorelbine (which I will miss!) and it was a no se, quick and easy chemo- for me. And I still have my hair! So I was not happy having to move on to Taxol.

    My onc knows I am still working full time, and has been trying to keep me with low se's, this is the one he chose. Other than hair loss (I guess we didn't talk priorities! Lol), he felt this was a manageable one....

    That said, I have gone from 1/2 a day at chemo to full day...and oh the benedryl sleep after! It takes at least a day from you- I usually go on Tuesdays. The first infusion they went regular speed for the benedryl and I wanted to climb the chair with sudden restlessness. It doesn't hurt but you don't feel in control- they lengthened the time for the benedryl the second time and it was much better (but the trade off is longer time there!)

    The next day both times, I look like I have a sunburn or that somebody slapped my face hard. It's a little tender but not unbearable and goes away.

    My legs got a rash and my ankles swelled a bit and were sore, I had to walk slow on the Thursday. This apparently means I an having a reaction so I will be on the benedryl/steroids from now on... : (. They also suggested I take benedryl(I took non drowsy Claritin) for 3 days after and that seemed to help as well.

    As for during, I try to nap and I have my ipad with me for distraction...

    I did go to yoga the day after chemo- someone mentioned using the steroid high for good- I sure did!

    This is my week off so no new items for now!

    As far as the vegetables, I think it's because they start tasting badly. I haven't experienced that yet, so not sure how it will deal with that- I will have to be creative- smoothies maybe?

    I hope you (and I) get a long, gentle run on this one!

    Hugs,

    Maureen

  • Modum
    Modum Member Posts: 59
    edited May 2015

    Hi Ladies!

    I just looked at this website from another board I am on and it has some great information on taxol food and supplement do/don't (s) with good explanations. Take a look!

    http://foodforbreastcancer.com/articles/what-shoul...

    Hugs,

    M

  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    Thanks Modum. I'm going to check it out after my shower. Information is good.

  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited May 2015

    thanks Modum an interesting read. I'm not giving up coffee though.

    Hope everyone is going well with treatment. I have an Onc appointment Monday, I see him once every 3 weeks then start cycle 27 starts on Tuesday.

  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    Hi. I had my 2nd treatment yesterday. Last week, which was my first treatment, I had no problems at all. Last night I was climbing out of my skin. It was like the restless leg syndrome I used to get when taking seroquel but it was all over my body. I had to take 4 xanax plus the rest of my night medicine to finally calm down and get to sleep. You know these doctors are really stingy with these xanax, so I will be having to cut them in half to make them last now. Has anyone experienced this? Does it happen often? Is there a non-drug way of dealing with it. Thanks for any help you can toss in my direction!!!!

  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited May 2015

    Dunesleeper I don't really have that problem but did have serious sleep issues. They finally reduced my Dex dose over time and that really helped. I also take magnesium which helps with sleep and muscle issues. I think there are some who have taken it for restless leg. Hopefully though it's just a one off. And you don't have further problems.

    I had no 78 yesterday. I've got scans coming up in June which I hope are ok as I'm planing a holiday in Singapore to visit friends late July.

    Hope everyone else is doing well

  • Lhuff
    Lhuff Member Posts: 5
    edited May 2015

    I had the exact same thing. But it was my first treatment of A/C. I could not be still, thought I was coming out of my body. I call it "heeby jeebies". The next chemo, dr cut my steroid in half and it helped. I too took 4 Ativan that night trying to settle my legs and arms. Took forever to get to sleep

  • Modum
    Modum Member Posts: 59
    edited May 2015

    Hi everyone,

    I am sitting in "the chair" right now and asked to have my steroids and Benadryl halved today- this is my third treatment (or start of 2 nd cycle- how is this drug counted?!) Anyway, my husband is out of town this week, so I am hoping this lets me drive myself home. Stay tuned! Lol

    I am taking Claritin prophylactic-ally, so hopefully my se's will be low again this time.

    I hope everyone is doing well!

    Take care,

    Maureen

  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    You take care too Maureen. How does the claritin help you? I know I have read it a couple of places, but I'm not sure what it does. I have a few in my medicine cabinet right now.

    Oh, and for me, I get 3 treatments (once a week) then one week off. That is considered one cycle. For me.

  • Modum
    Modum Member Posts: 59
    edited May 2015

    hi Dunsleeper,

    So far so good with the half dose approach and I did drive home safely (I did sleep in the chair though!) the keep the ranitidine at full dose, but that isn't the one causing the jitters and sleepiness- just protecting the stomach so I am good with that.

    I am taking the Claritin because I got rashes down my shins after the first dose and swollen, sore ankles. They suggested benedryl for 3 days post chemo (but I didn't want the sleep so went with non drowsy Claritin) - it seemed to work, but I don't have a ton of experience to go on so far...

    Will see what the next few days bring.

    M

  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    That's great, Modum!!! I will definitely be bringing this up to anyone who will listen.

    Are we kicking cancer's butt? Are we? Are we? You bet we are!

    Your claritin fix seems to be working well. I predict you will be feeling better every day.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2015

    Yes, for me Taxol did kick cancer's butt! Complete metabolic response, meaning the PET-CT scan after three cycles showed no active cancer, only the shapes of dead or dying tumors (liver).

    I hated restless leg. The solution for me was to ask the nurse each time to please push the benadryl very slowly.

    Talk to the chemo nurses about side effects. They know a lot.

    I like the foodforbreastcancer.com site that Modum mentioned. It has sensible advice. I followed the suggestions for Taxol, like eating cruciferae, blueberries, red grapes, green tea, etc. Maybe that had a part in the good response?

  • Modum
    Modum Member Posts: 59
    edited May 2015

    That's awesome to hear Shetlandpony! I won't know my results for a bit yet (June) so I am hoping there will be lots of corpses on that screen!!

    I just lost a kitten-sized load of hair this morning (began cycle 2 yesterday), I have a lot of hair so I'm ok for now...but it's coming soon- ugh! Trying to get a family portrait done this weekend before it's all gone!

    Take care,

    Maureen

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2015

    Yes, Modum, hoping for a great scan for you! And all of us!

    "Kitten-sized load of hair." I had one of those sticky rollers used for getting cat fur off clothes, and I ended up using it on my pillow every morning during the time I was shedding like a cat. (I got a pixie cut when my long hair started coming out after my third infusion.)

  • Lauralind5
    Lauralind5 Member Posts: 220
    edited May 2015

    Hi everyone. I was originally diagnosed in April 2013 triple negative with positive lymph nodes. I went through double dense AC/T. Then surgery and then 33 rads. I finished at the end of dec. I was diagnosed with brain mets in nov 2014, had surgery then cyber knife radiation. My head scan at the end of March was clear but my chest ct in February showed mets to lymph nodes in my chest.

    I started high dose taxotere every 3 weeks with horrible side effects. We reduced the dose twice but it didn't help the side effects. Severe weakness in my legs where I couldn't walk more than about 5 feet. However my recent scan showed no progression and the lymph nodes are smaller.

    In two weeks I am going on weekly taxol 2 weeks on 1 week off. I will request as low a dose of steroids as they will do as I've had it with decadron ! I was in crazy high doses during the whole brain thing. Ugh.

    I am wondering if anyone experiences weight loss or gain on the weekly taxol ? My hair is almost gone I guess the taxol will finish it off before it starts fluffing back out in a few months?

    I just spent the last hour reading all the posts in this thread. I hope everyone is doing well !


  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    My goodness this hair loss thing is quite confusing. Some say around day 14-16. The end of my first cycle, when I get no treatment is when I guessed it would happen. We're planning to be on a special vacation that week. Now I read the beginning of cycle 2. I guess I should just not worry about it.

    So, is it the benadryl or the steroid that causes the restless leg syndrome. I thought it was the steroid and planned to ask for a lower dose of that. Someone asked about weight gain or loss. I'm gaining because I just can't stop eating.

    Also, I'm eating high glycemic index food. I don't know what's causing it but it needs to get under control. I had hoped to lose 10 lbs for this trip. Instead I think I gained 4. Oh well.

  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited May 2015

    Hair loss for me was around the 10th infusion. First I cut it real short sort of a pixie cut. When there were just tufts of hair I shaved it. I am getting pretty adapt at drawing in eyebrows. I don't go out without painting my face on anymore. I figure it's the steroid for restless leg tho That is one SE I didn't have. The dose of Dexadron given to me is a low dose. I do take a nap during the infusion due to the Benadryl. Back to the hair topic. I did post awhile back a note of [laces that offer free wigs.on another thread. If I remember correctly I got the info from someone at cancercare.org. My weight has been stable so far.

    Charlotte


  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015
    image

    Thanks Charlotte. If I can work it into my schedule, I may have a good stylist give me a shorter cut. I wear mine short, so I don't think that is an absolutely necessary step. I'm all set with scarves. Frankly, I don't think it is the best look on me; but I'll wait until Winter for wigs -- just for the comfort factor. I photoshopped myself bald and bald with a scarf. HAHAHAHAHAHAHAHA! What a goof! I think I have moved past the fear of it though. I would love to go back to sleep, but today my niece is having my great-niece's 7th birthday party. I have to wake up for THAT!!!!

    There's my mom and my great-niece.

  • Modum
    Modum Member Posts: 59
    edited May 2015

    Dunsleeperwhat a fun thing to wake up to! Hope your party was nice!

    I am continuing to have some major hair thinning, my part is getting shinier- sigh. No wig yet, but will be coming soon. So far the other se's have been ok. Crazy chemo!

    Good idea on the lint brush- will pull mine out!

    Charlotte, I'm going to have to hone my skills on the eyebrow front- I worry I will draw myself looking Perpetually surprised or something! Lol

    I haven't noticed any weight gain/loss so far- no real change in my appetite. It's interesting you are craving high glycemic foods!

    Lauralind- good luck on getting the dose figured out.

    Hope everyone is staying well,

    Maureen

  • Modum
    Modum Member Posts: 59
    edited May 2015

    Oh! Has anyone had their eyes feeling more dry? I wear contacts and I am finding I can't wear them as long each day-

    Thanks!

    M

  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited May 2015

    Modum I definately get dry eye from Taxol. I've just got used to it over time.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2015

    Yup, Modum, dry, teary eyes. After talking with the nurse and the pharmacist, I got some Systane Ultra drops that helped a lot. What you want are artificial tears, not the "get the red out" stuff. I'm not sure if there are any issues with using the drops with contacts. For eyebrows, I liked the kind of eyebrow makeup in a little pot, that you apply with a brush, because it stayed on well. But I carried a pencil in my purse just in case. Maybe you will be like me and have enough brows left to show you where to draw. So now your purse is getting fuller: eye drops, tissue, eyebrow pencil, emergency snack for steroid munchies...

    NYCchutzpah, I hear you about painting your face before going out. The longer I was on taxol, the more makeup I wore. Eventually I used eyeshadow and eyeliner to make up for the missing eyelashes, under-eye concealer for the dark circles, blush to look a little healthier, eyebrow makeup, may as well add lipsitck! But sometimes I would just draw on eyebrows and go.

    I really think the chemo nurses told me it was pushing the benadryl too fast the caused the restless leg.

    Lauralind, I'm sorry you have had such a hard time. Hopefully the weekly will be easier on you. To answer your question, not much weight change for me.

    Speaking of dryness, Ladies, let me just say two words: Replens and Astroglide X.

  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited May 2015

    It's official. It is happening NOW. My hair is leaving my head. It's the hair's idea. Not mine. LOL. It is kind of creepy. LOL

  • Modum
    Modum Member Posts: 59
    edited May 2015

    Hi Shetland,,

    Thanks for the tip on Systane, I will be getting some today! (And I agree re rep lens and astroglide!)

    Dunsleeper, hang in there. I got an initial major fall out and then it stopped, I am not using a wig yet. (But it is sitting on standby for sure!)

    I hope everyone else is doing great!

    Maureen

  • BonnieMay
    BonnieMay Member Posts: 3
    edited May 2015

    Greetings Ladies, I'm new to this website/discussion board but I'm not new to BC. I thought I'd chime in here because I am in the midst of my initial Taxol regime. So far, I've had 8 weekly infusions. The plan is to stop after 12 weeks to do scans and see how things are responding though I can see and feel a huge difference already as my breast has shrunk down to its normal size (it was quite swollen at the time of my Stage IV inflammatory BC diagnosis in late-March). I'm also receiving Herceptin and Perjeta every 3rd week and Zometa every 4th week (I have bone and liver mets). I have to say, I know that the side effects are supposed to be cumulative but for me, the worst time was after the first week but even that wasn't so bad. Just some leg aches, a bit of fatigue and sleeping problems but I take benadryl at night for the three nights following the infusion and we did cut the steroid dose for the 2nd cycle and subsequent cycles. I did start losing hair at about week 3 so I shaved my head but the joke is on me as I have not lost the stubble even now. My doc had warned me not to do anything too rash with respect to my hair because she said some people didn't lose it all - that it only thinned - but that was one bit of her advice that I didn't listen to because I really didn't like watching it fall out in clumps and clog the shower. Whoops. Now, after week 8 my biggest problem is super dry skin on my face and hands and a tiny bit of numbness in my fingertips and toetips but overall I'm finding the Taxol to be quite manageable and feel good that it seems to be doing what it is supposed to. I hope you are continuing to do well on it too! BB

  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited May 2015

    Hi BonnieBay Welcome to the best site I have found for discussing breast cancer, There are quite a few useful threads.I see that you are pretty recently diagnosed, you sound pretty good. I was a wreck for almost a year after being diagnosed. But here is little story about my experince with hair loss. I shaved my head about 3 weeks ago and just have grey stubble, used to have nice thick dirty blonde hair with just a touch of grey now my head looks like my husbands face when he needs a shave. The joke is that now he has more hair than I do

    Charllotte

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