Weekly Taxol for Stage 4

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  • shazzakelly
    shazzakelly Member Posts: 620

    Welcome Brooke & Maine, taxol seems to be a very doable chemo for most with I think fatigue being the biggest SE most of us deal with.

    I am enjoying a few weeks off taxol and I'm starting to feel a little more rested. I have agreed to take part in the oral taxol trial and have my first assessment on the 18th. A little nervous about the whole thing but hoping in the long run it will mean less time at the hospital.

    Hope everyone is doing well and that 2016 is stable or even NED for all of us

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Shazza,

    I'm glad you're feeling more rested.

    Let us know how the oral trial goes :) I haven't completely ruled out doing it, but I'm not sure about the pills on an empty tummy...

    Yep, here's to a good 2016!

  • MaineRottweilers
    MaineRottweilers Member Posts: 44

    Oral Taxol? Very interesting. Part of what held me back from doing Taxol from the outset is the commitment to time in the chair (and the added expense that goes with it). I took my first infusion on Thursday and slept most of Friday but woke up feeling fresh and prepared to take on the day Saturday. So far it's much, much better than how I would be feeling after Taxotere. I'm sorry that I didn't make the switch earlier. I hope I didn't just jinx myself. My skin doesn't hurt, I don't feel like I am made of plastic, my muscles are cooperating and I feel like me and can think like me. I still have issues with vision and screen time has to be limited but much, much more doable---so far.

  • RedStar
    RedStar Member Posts: 1

    Hi everyone,

    I'm about to start weekly Taxol next monday after a failure of AC chemo on my lung and liver mets. I'm glad to read some of the more recent posts that this chemo has been successful for some of you. Are any of you here taking L-Glutamine and Vitamin B complex to prevent neuropathy? This is the side effect I'm most worried about. Otherwise I'm hoping this chemo is the one to reduce my tumours.

  • MaineRottweilers
    MaineRottweilers Member Posts: 44

    I take B12 (Rx) and a B complex (OTC) and so far have no neuropathy. I had four taxotere infusions before switching to taxol weekly. I'll take my fourth, weekly taxol tomorrow so it's early yet.

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    Hi

    I'm new to this thread but have tried to read many of the pages. Taxol is now my 6th line treatment since diagnosed stage 4. Besides what I listed, I was also in two clinical trials which sounded very promising, but just didn't work for me. I've been going through a very rough patch the past month with belly mets slowing/shutting down my bowels causing severe pain and discomfort and a very swollen, hard belly. I had my third Taxol infusion yesterday, and I am happy to say that I am beginning to feel improvement! I am so hoping this works!

    Just want to mention that I am doing ice therapy on my hands and feet during infusions to prevent issues. It's a little uncomfortable to be iced up, but if it works - I'll do it!

    MaineRottweilers, I'm a big dog lover and have my second rescued rottweiler, Odin, who is turning 8 next month. We fostered him from a puppy and adopted him. My rottweiler rescue, Rocky, before Odin was truly a one in a million dog. I still miss him terribly. They are wonderful dogs.

    Wishing everyone a long success!

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    Hi everybody. I will be doing this chemo from the 8th and have read about tge vitamin B12. How long can anybody do this chemo for? I have been having a rough time lately with considerable increase in symptoms and pain so really hope this works

    Barbara

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Barbara.

    I've been on taxol for 7 months do far. It's pretty doable for me, the worst se being fatigue. I also have a bit of neuropathy in my fingers & toes & my nails have lifted a little. It's kept me stable.

    Shazza, who you'll see on this thread has been doing taxol for 2 years! I hope it will work for us that long too :)

    Hummingbird I hope the taxol relieves the discomfort you've got & deals to those mets.

    Wish you all the best :)

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    Hi. I just wondered when you go to the hospital how long the infusions take? Am feeling very uncomfortable at the moment and need to get myself mentally prepared

    Barbar

  • MaineRottweilers
    MaineRottweilers Member Posts: 44

    On the weeks I get only Taxol, it usually takes about three hours between check in with nurse about how I am doing, accessing my port, labs, premeds and finally my infusion. If I am getting the rest of my meds: perjeta, zometa, & herceptin, it's a full six hour day.

  • shazzakelly
    shazzakelly Member Posts: 620

    I think it's different with every infusion centre but it will definitely take the longer the first couple of times as they run it very slowly in ensure no alergic reaction. Taxol itself runs over an hour and it's the pre meds that make up the rest of the time and everyone hospital seems to have a different regime. I think about 2 hours all up is pretty standard though. If I'm running late for work they will try and get me through in an hour and a half.

    I haven't had any chemo since just before Xmas. I took a break to enjoy the New Zealand Summer. I start back next week but will be trialling the oral version of weekly Taxol (tablets every morning for 3 days) first week back. As part of a controlled trialI will let you know how it goes but I have spoken to a couple of people that have tried it already who say it is much easier to tolerate than the IV

  • Geeper
    Geeper Member Posts: 91

    Hello everyone- I was diagnosed with IBC stage 4 on 12/17/2015 and started chemo (Taxol only) on 01/11/2016. I am on my 4th week of chemo and so far so good. I have minimal SE's. My hair is thinning out, but I started out with very thick hair. I have been reading the posts and some of you have shown great improvement with Taxol, so I am very happy to hear this. I was worried when my MO started me on Taxol with no other combination/regimen. I have noticed great external results. I have IDC and IBC and it seems like my tumor has shrunk and my IBC symptoms have minimized. My breast looks a little bit normal now. I will be having scans after my 12th treatment of Taxol. My infusion takes about 2 1/2 hours to 3 hours. Much of the time is port access, pre-meds and Taxol is last which is about an hour long. I usually sleep for most of my infusion treatment due to the Benadryl. The Benadryl knocks me out. I am wishing everyone the best of luck and warm wishes to all. I am glad to have found this thread due to my IBC sister Bon :)  

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Geeper. Sounds like taxol is working for you, fantastic.

    I had taxol number 32 today followed by a zometa infusion. I'm soooo tired now. It was a bit hard to drive home & I feel very 'heavy' like every step is an effort. That'll be the lovely zometa. I hope work is not too busy tomorrow! And that's without IV premeds (apart from dex) I have mine orally so I'm not too woozy to drive...

    Good luck with the oral taxol Shazza. I'm looking forward to hearing how it goes. Did you find out the rational for no caffeine? (& did you dye your hair?) I'm glad you've enjoyed your wee break from it.

    I'm off to Nelson next week to have a holiday & celebrate my 50th birthday with DH & kids. Can't wait!

    Take care all :)

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    kt1966, thank you for your good wishes. I hope you have an easy day at work tomorrow. Happy 50th Birthday!! That sounds like a wonderful celebration plan. Hope you have a great time! Enjoy!

  • Geeper
    Geeper Member Posts: 91

    kt1966- Happy 50th birthday. Hope you have a wonderful time with DH and kids :) 

  • mutherflush
    mutherflush Member Posts: 85

    Hi . Just wanted to share my good news with you all. I have just had my scan results after 15 infusions of Taxol(3wks on 1wk off). Eyes, lungs and bones NEAD. Liver lesion reduced considerably in size. CEA 4.5(down from 9.6) and CA153 is 700 (down from 1860).All blood work is within normal range and I feel marvellous.

    Feb 2015 I was told that I had exhausted all options. After visiting this thread I asked my Onc if I could revisit Taxol on a weekly basis. She agreed and this is the result.

    It is my 10th cancerversary this year and my 4th metsaversary. I vowed i would never give in to C and I never will. I swim twice weekly and my bones allow me to walk short distances. I try to do as many normal daily chores as I can. If I cant I dont beat myself up about it. I just ask DH for help. I hope this post gives you the positivity I am feeling now.

    Wishing you all good results and pain free days.

  • shazzakelly
    shazzakelly Member Posts: 620

    what fantastic news Motherflush. Thanks for sharing. Taxol truely is a wonder drug for some of us. You are an inspiration to us all

  • kt1966
    kt1966 Member Posts: 1,021

    Wow, that's great news mutherflush! And after only 15 infusions.

    So great to have encouraging results :)


    Thanks for the good wishes Hummingbird & Geeper. I hope you are both continuing to improve with taxol.

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    mutherflush, that is wonderful news! I'm so excited for you and veryhappy to hear that!

  • Geeper
    Geeper Member Posts: 91

    mutherflush- I am so happy for you!! This is fabulous news. Happy 10th cancerversary and Happy 4th metsaversary. This post made me feel happy and teary eye. This gives us hope. Thank you for sharing your news with us. 

  • mutherflush
    mutherflush Member Posts: 85

    Thannk you all for your responses. Its great to know that your support is out there. I read visit the site daily and I have recived so much inspiration and knowledge from you all.

    Here,s hoping Taxol keeps us going jntil that miracle cure comes along.


  • mutherflush
    mutherflush Member Posts: 85

    Hi Shazza. And K11966 I notice you have been on Taxol quite a while now. Did you have any problems with fingernails and toenails. Apart from tiredndss this has been my only issue. My nails are sore and lifted a little but not dropped off. Toenails seem to have thickened and become brittle. Did you lose youf hair and if so has it started to grow back yet.?

    Looking forward to hearing how you get on with the Oral Taxol Shazza.


  • kt1966
    kt1966 Member Posts: 1,021

    Hi mutherflush.

    I found that my fingernails lifted too, first they got discoloured then oozy. I had antibiotics that cleared up the ooze. Now I make sure to have nail polish on them for chemo and at least 4 days afterwards & they are no longer discoloured (stops light reacting with chemo). The lifted areas are slowly growing out.

    My toenails aren't too bad, but maybe slightly thickened like yours.

    I lost my hair quite quickly - after about 3 weeks of taxol it was coming out in clumps so I got it shaved. Now it's growing back in but very fine and grey/white and you can still see my scalp thru it.

    I have 3 eyelashes and not too many more hairs on my eye brows. Can't wait till my eyelashes especially start growing back!


    Good luck with the trial this week Shazza :)

  • blondedoris
    blondedoris Member Posts: 57

    paclitaxel has made me stable!!!! Sooooo excited about getting that news this morning...no bone mets, lung mets either shrunk or no longer visible and lymph nodes clear and normal sizes again!

    Still have no hair and crappy nails but I'll happily live with that...lovin' my treatment team!

    Really hope this regimen works for everyone else too xx

  • shazzakelly
    shazzakelly Member Posts: 620

    Blondedoris what fantastic news I'm so pleased for you.

    Mutherflush while I initially had a few of the side effects of taxol, hair loss, funky nails etc they all seem to have settled over time although I still get quite fatigued on it.

    I am currently staying at the clinical studies facility and had my first dose of Oraxal the oral form of paclitaxel.

    First of all I was given a tablet of a new drug that helps the gut absorb taxol. Then after an hour I had the taxol tablets. There were 11 of them but they weren't large. No food for 4 hours after. There were no premeds and so far I have had no side effects. It seems that studies have shown that there are fewer side effects with the oral overall and good news for most neuropathy is less of a problem.

    I have been having regular blood tests during the day to test the levels of taxol in my system. The drug is taken over 3 days of each week so I will stay here for the next doses and will be released on Friday. I will come in once a day for blood tests till Wednesday next week. The following week I will come back for Iv taxol and they will repeat the blood tests checking for levels in my blood. If all goes well I will start on the tablets full time.

    I'll let you know how things progress.

  • mutherflush
    mutherflush Member Posts: 85

    Good news Blondedoris. Long may it continue. Thanks Kt1966 for the info. As you say we can live without nails and hair. Good luck Shazza with the trial. We are all waiting to hear how you get on.

    Wishing you all good days.

  • blondedoris
    blondedoris Member Posts: 57

    Hey Shazza - you aren't getting nausea on the tablets? Just fatigue? Sounds promising and I wish you all the best with it x

    Motherflush - great news that you're getting on well with taxol! And your 4th anniversary...so chuffed for you! x

    (edited as I hit submit before I'd finished talking...)

  • kt1966
    kt1966 Member Posts: 1,021

    Congrats on the good results, blondedoris.

    Great the trial is going well, Shazza. How is it not eating till lunchtime? & pills on an empty stomach? It is quite a commitment at the start, with all those bloodtests :)

    I'm going to enjoy not going to chemo today! I'm on holiday, back to normal next week :)

  • shazzakelly
    shazzakelly Member Posts: 620

    KT enjoy your chemo holiday. Taking the pills hasn't been a problem at all. There are 12 of them but they are quite small. Yesterday because they didn't get started in time I didn't get to eat till 2:30pm. That was a bit grim. If I get to take these at home I would start a lot earlier. A little bit of nausea this afternoon but otherwise I'm still feeling fine. Considering I had no premeds and no anti nausea meds I would say I feel pretty good. I am a bit sick of being stuck in the unit though and can't wait to go home on Friday morning.

    Hope everyone is doing well. I'm going to have a wee nana nap to pass some time

  • Geeper
    Geeper Member Posts: 91

    blondedoris- Great News! I am glad to know that paclitaxel has made you stable. I am on my 5th week of Taxol and hope it makes me stable or NED. 

    The only side effect I've had from Taxol is hair loss on 3rd week. No fatigue, nausea/vomiting, constipation/diarrhea.