Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Weekly Taxol for Stage 4

1…8283848688

Comments

  • ninetwelve
    ninetwelve Member Posts: 328

    I just had my third weekly Taxol. It's been anticlimactic so far, but I don't want to jinx myself. Took off my hair in a pixie cut, and I guess I'll be finding out shortly if that was actually necessary. I'm the only one in my center I've seen so far who is trying to ice hands and feet, and we'll see how that goes, too. Surprisingly, the weekly taxol has been easier on my blood counts than Ibrance or Xeloda were. Diarrhea's not a problem, but constipation is. I've added to my diet extra water, Honeycrisp apples and vegan smoothies with probiotics (it's called Earth Chimp. Got it from Amazon.)

    Even the steroids haven't been too awful, though I'm grateful to have next week off from them, and a reduction for my 4th infusion. The worst thing I found with steroids is when they wear off, and all the inflammation comes back to all the areas I get pain. I know I need to get out and walk more, but I get tired. Even four blocks and back seems arduous. My motto is Dance Every Day, so I am doing some low key exercises to music for ten to twenty minutes. Helps with the flexibility and balance, anyway.

  • ninetwelve
    ninetwelve Member Posts: 328

    Popping back in to say my hair is coming out in handfuls. I still have coverage, but probably not for long.

  • lafsunshine
    lafsunshine Member Posts: 50

    I have had 6 treatments of Abraxane along with 3 treatments of Keytruda. I am half-way through six cycles of 2 weeks on 1week off. I had a PET/CT scan done yesterday and the results are in .... they are wonderful! Liver and sternum lesions have decreased and a couple of lymph nodes aren't even visible anymore! I truly believe in prayer and I know a lot of prayers have been said for me -PRAISE BE TO GOD! Prayers are being answered! I will continue to pray that this treatment will work for a very, very long time! And, I will pray that all of our treatments will be effective and manageable for all of us for a very, very long time!

    NineTwelve -I too have found that the Abraxane has been easier than the Ibrance when it comes to my blood counts. Glad there is no diarrhea for you, but constipation is just as bad. Hoping you get some relief soon! It seems like you are handling Taxol well, I'm happy to hear that! Keep on dancing!

  • teedoff
    teedoff Member Posts: 63

    I am so glad 😀 this has given you a great response right away.Taxol has been good to me so far. I have recently started a reduced schedule of two weeks on and one week off since I’ve been on Taxol since November and fatigue and neuropathy were increasing. Blood work good. Tumor markers still trending down. Good response in liver and bones stable. I can’t complain. I even got my Covid booster with no worse side effects than second Moderna shot. I know this ride won’t last forever, but I appreciate the gift of time.

  • denny10
    denny10 Member Posts: 421

    lafsunshine, great news, may the treatment keep working for you and all of us on Taxol/Abraxane for a long time.

    Teedoff, glad to hear Taxol is working for you too, the gift of time is so precious.

    I have been on Taxol, then Abraxane since December 2020. My tumours were shrinking at my last scan. I am now on a shedule of 1 week treatment, 1 week off ,due to fatigue and neuropathy. After 2 new cycles my eyelashes [ and nostril hairs ] have started to regrow. I cannot tell if my head hair is growing; I have had a downy fuzz for the last 6 months. I am hoping my next scan will show stable.

  • lafsunshine
    lafsunshine Member Posts: 50

    Teedoff and Denny10 - Thank you so much for your kind words! So happy to hear that Taxol/Abraxane has been working so well for both of you! Yay -prayers are being answered! May God bless all of us with a treatment that is most effective and manageable! And yes, the gift of time is so precious!
  • ninetwelve
    ninetwelve Member Posts: 328

    Two months into the weekly Taxol regimen. My tumor makers are down to 41 and the swelling and pain I had in my lymph nodes has gone. My hair is just short patchy fuzz, but I'm not going to shave it. I don't want to go to all that trouble, don't want pesky stubble and don't want ingrown hairs. I'm happy with my beanie hats from Headquarters Unlimited. The bamboo ones are kind of tight, with mask and glasses, but the all cotton ones feel lovely.

    My onc reduced my steroids from ten to eight 4 mg tablets, and I haven't wanted to go any lower than that. I will skip two treatments in November so I can have Thanksgiving weekend off.

    My treatment day is Friday, and I like that schedule. Somehow, even though I don't work anymore, Fridays have a lighter, happier feel to them. Also, if I have an energy rush at night, I know a few people who will be up late and will answer their phones if I call.

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    912, I am also on weekly Taxol. Was 2 weeks on and 1 week off, now every other week with dose reduction. My platelets got hit hard and between that and occasional low ANC, (plus huge Taxol arm rash, mouth sores, UTIs, yeast infections and damaged fingernails, I was getting beat up.

    CT scan Nov 15 and MRI Nov 21..we will see if it is holding.

    S

  • teedoff
    teedoff Member Posts: 63

    Sandi, looks like we are both now on the same lower dose and every other week schedule. So far, so good as far as blood work goes. Actually starting to feel a bit better and neuropathy seems to be staying about the same. Next month scans. It’s hard to believe it’s a year this month since I started taxol. I guess that’s a great run, but it makes me nervous to know that it can’t last indefinitely.

    912, I hope Taxol is kind to you and beats back those Mets for quite awhile! Be sure to ice hands and feet!






  • denny10
    denny10 Member Posts: 421

    After nearly a year on Taxol and Abraxane it's time for me to move on. My last scan showed a mixed reaction , but with growth in my lung and liver and my increasing concern over side effects :fatigue and neuropathy affecting the qualiy of my life, I need a new treatment.

    Best wishes to you all , I hope it gives you the opportunity to enjoy life.

  • ninaca
    ninaca Member Posts: 232

    Hi Everyone, So glad to be here. I was just directed to this thread since I am one of those that will have Taxol for mets, not a newly diagnosed person. I plan on staying on as long as I'm getting results. Couldn't happen sooner since markers have gone over 2,000 and I need something to stop the rise. We only found out two weeks ago what is happening, PET FDG uptake was found in my pelvic fluid and nodularity on the omentum suspicious for mets. (I had to look a few words up here). Lobular mets go to the linings of places and don't always show up since they are not always a solid tumors, more like a net of small tumors. I had a port put in Monday and today was my first TAXOL day! Great nurse, had frozen ice packs ready for my feet in a tray and ice chips in a bag (for specimens usually) for my fingers covered with gloves. I decided not to do ice capping for my hair since I will be doing this for quite a while, I hope. Not the usual 12 treatments. I will be on weekly doses, just wondering if I should have been on the three weeks schedule so I could have gotten a bigger blast for the first round. I had taxetere 23 years ago so this is all a bit deja vu, but then it was for initial diagnosis. I just got off of 17 weeks on Xeloda and my hands and feet are only now recovering, hope it doesn't interfere with Taxol. At least it didn't affect my blood tests like Ibrance did.

    Just wondering how it is decided who gets Abraxane and who gets Xeloda. Any major difference between the drugs? I know Abraxane is newer but is it better or just different. Thanks all for listening. NinaCA

  • moth
    moth Member Posts: 3,293

    Hi Nina, Taxol is way cheaper so that is usually preferred by insurers and public health care plans.

    Abraxane has way lower likelihood of allergic reactions, so no premeds & is a faster infusion. Mine is 30 min. Same issues with neuropathy, but it affects blood counts less. On Taxol I had to do grastofil shots, on Abraxane I don't.

    As far as efficacy, I've seen studies show that one is superior to the other and other studies show that they're essentially same.

    ASCOpost did a write up of it in 2018 https://ascopost.com/issues/february-10-2018/updat...


    I did weekly Taxol from March-November 2020 & then switched to Abraxane. In my case I got switched because I came off a clinical trial & the Abraxane+atezolizumab combo is the one that showed some benefit so it was the evidence based combo. And as I'm triple neg, according to the article above, abraxane might be better for me but who knows...

  • ninaca
    ninaca Member Posts: 232

    Thanks Moth, thanks for the info. I'll keep that in mind if I get continued low blood counts. Glad you were able to switch.


  • ninetwelve
    ninetwelve Member Posts: 328

    After three months of weekly Taxol, my first scan result was very positive. Liver is clear and no new spots. Lungs much better, with some resolution of nodules and some that shrank greatly. Original mets to sternum and primary tumor are ambiguous, and a different scan modality is suggested.

    My onc says I can drop to biweekly treatments, so I'm happy about that. Also, I get the last two weeks off, so I'm done with infusions for the year.

  • teedoff
    teedoff Member Posts: 63

    So happy for you! When Taxol works, it really makes a difference. The bi weekly treatment schedule is great for recovery time on blood counts and having more good days. I hope your Taxol ride is a long one

  • ninetwelve
    ninetwelve Member Posts: 328

    Thanks, Teedoff. This year, I decided to skip Christmas with my family due to my sad white blood cell count and the Omicron variant, but I can look forward to outdoor events next year, and I'm choosing to have a positive attitude about it. Hope your holidays are wonderful and safe!

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    I am new to this thread as I have just had progression on the kisqali / letrozole combo. My Ca153 markers have been rising by 100 each month since Oct 21 and it turns out there was growth in the liver.

    I'm now being told that i will start weekly paclitaxel on Thurs next week. I've never had chemo before as I was diagnosed de novo in March 21 and went straight onto kisqali.

    Can anyone share any tips or experiences please?

    I've seen some comments about icing hands and feet, do you do this just when your having the treatment or after as well??

    I have 2 young girls who are 6 and 8, will this chemo floor me or is it manageable??


    Thank you

    X

  • moth
    moth Member Posts: 3,293

    Taxol caused fatigue, bone & joint pain for me. I ended up needing a dose reduction - partly because of that & also we were struggling to keep my WBC counts up. With one dose reduction it was much more tolerable. Everyone responds so differently so it's hard to predict.

    you ice during treatment - I started about 5 mins before & kept it going through the flush. The idea behind icing is it constrict the small capillaries at the tips so the blood flow there is reduced & chemo doesn't settle there & damage the nerves. Somewhere in this thread I posed pictures of my setup so if you read this thread backwards you'll see it - & you'll get a good sense of how others cope on it.

    I did for 9 months and then switched to its sister chemo nab-paclitaxel/abraxane for another 12 months ... so 21 months of a taxane. Icing kept my neuropathy to a minimun. I have some but it's not terribly life impacting. Just can't let my hands or feet get cold.

    I hope it goes super well for you!!!

  • ninetwelve
    ninetwelve Member Posts: 328

    My taxol treatments have been surprisingly easy, compared to what I thought it would be. It cleared up my liver after 12 weeks and reduced the size of the spots on my lungs. My most recent labs show that my tumor markers are now in the normal range (34). My oncologist gave me the option of reducing the dosage, or reducing frequency, from 3X a month to two. (I reduced frequency). Side effects have included some shortness of breath, low energy for a few days, and heartburn/GERD. I eat very lightly on treatment days, and I stop eating 2 hours before I go to bed because it's so bad when I lie down with food in my stomach. And I'm more careful now to avoid foods that used to mildly upset my stomach in the past (dairy products and fried foods, mainly).

    Eyelashes and eyebrows totally gone. My acupuncturist has been putting some needles in my scalp, so I have a full head of fuzz, kind of like a crew cut. I bought several cotton caps from Headcovers Unlimited, and never bothered with wigs. I was surprised at how people started treating me differently when I lost my brows and lashes. More gently, actually. I guess that's okay with me. It's a tough world.

    The steroids caused some issues at first, but that dosage was reduced by 20% and the issues resolved.

    I use cold socks for neuropathy, but don't do anything for my hands.

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Moth & Ninetwelve

    Thank you both for your replies.

    It's good to hear it cleared up your liver. I have quite a few mets on the liver so I'm hoping it does a good job.

    Thanks for the tips Re neuropathy. I will make sure I ice my hands and feet.

    My first one is Thursday morning, it's weird I'm super nervous but also just want to get on with it at the same time!!

    I'll let you know how it goes.

    Thank you!

  • mermaid007
    mermaid007 Member Posts: 40

    Hi Hamer,

    I’m in the UK and starting Taxol this Wednesday. Had mets to bone and liver for 7 years and have managed to avoid IV chemo up to now. Am very apprehensive about side effects etc will be good to visit this thread and see how everybody is coping.

    Good luck for this week

    Xx

  • ninaca
    ninaca Member Posts: 232

    I Need advice for bald head- Has Anyone used a cream they would like to recommend? I have a few long wispy white hairs that I should probably cut off but I use them as a comb over in the morning. My head does itch, it's dry up there, so I'm wondering if anyone has been successful with creams, lotions, sprays?

    Also, I've developed a low grade fever this week (101.2) and they can't find the cause. I'm having to skip infusion until they can clear up the mystery. Has this happened to anyone here?


    Hammer- I've had 10 rounds of weekly taxol and it's been pretty easy up until this week. The only reactions I've had has been to the Decadron premeds which can make it hard to sleep for a few days. The hair is gone by the 3rd round unless you do the cold capping. I have 6 wigs now to choose from, depending on my mood. NINA :))

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    I'm quite new to Paclitaxel. I've had 4 treatments so far, one missed due to low neutrophils. At the beginning they tested the cea153 marker which was 878. Today's blood result shows the marker at 1000.

    The oncologist said I might get a spike in the beginning but has anyone ever had this?

    I'm on the low dose weekly but worried now it's not working with the marker rise.

    Any experience?

    Thanks

  • moth
    moth Member Posts: 3,293

    I've read before that during tumor die off tumor markers can rise because there's more fragments of the dying cells in the blood. I think this highlights why tumor markers are not key deciding factors in most oncology situations and we need to rely on scans - they give us very incomplete information.

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Moth

    Thanks for your reply, yes that makes sense. I just hope mine are dying off!!

    Do you mind ne asking how many sessions you had before you saw positive results?

  • moth
    moth Member Posts: 3,293

    So, it's a little different for me because I was on immunotherapy (atezolizumab/Tecentriq) + taxol as I'm TNBC and it is assumed the immunotherapy was doing the heavy lifting in my treatment, even though it's given in conjunction with a taxane. It wasn't till about 3-4 months in that we saw improvement - this is more typical of immunotherapy response which tends to be slow & then ramp up. I got 21 months total out of the immunotherapy + taxane treatment (though I switched from taxol to abraxane after 9 months...)

  • ninaca
    ninaca Member Posts: 232

    Wondering how many weeks/sessions of infusion, people have had for Taxol. I will be having my 14th weekly infusion this week. I am now being allowed to be 3 weeks on and one week off since my markers went down and my PET has been clear. How long can one be on this chemo and still tolerate it? Thanks, Nina

  • JACK5IE
    JACK5IE Member Posts: 654

    I'm not on Taxol but I am on Abraxane. Do any of you have ear/hearing issues? I already saw an ENT and he said my hearing is fine but to me it is muffled plus I hear various noises. ENT said it could be from the brain radiation I had last July, but I think Abraxane is causing it. Anyone?

    Not many seem to be on Abraxan which is why I am posting here. Thanks.

  • moth
    moth Member Posts: 3,293

    nina, I was on taxol & then abraxane for 21 months. Stopped only to switch to different chemo due to progression, otherwise would have stayed on.

    jack5ie, all the taxanes can cause peripheral neuropathy which can also affect the ears. Tinnitus, hearing changes etc can all be caused by the neuropathy. I think there are some articles on pubmed about hearing & chemo induced peripheral neuropathy

  • moth
    moth Member Posts: 3,293

    nina, I was on taxol & then abraxane for 21 months. Changed chemo due to progression but otherwise would have stayed on.

    jack5ie, I've read the peripheral neuropathy from the taxanes can impact the ears so I think that is a definite possibility

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.