Weekly Taxol for Stage 4

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  • Tillycat
    Tillycat Member Posts: 57

    I don't want to tempt fate by getting too excited but I finished my first cycle of weekly taxol (so 3 doses) and then had a week off, went in today for cycle 2 dose 4 and they checked my blood before they started - results say bilirubin is down from 80 to 37 (I'm not yellow any more either) liver enzymes are all down eg - gamma gt from 1608 to 668, & alanine trans from 242 to 50 which suggests liver function is improving.

    My tumour markers are down from 2711 to 2086

    I am struggling with the side effects, feeling really, really tired, but this evening everything seems easier to deal with :-)

    I do know that this isn't going to cure me forever, which is what most of my family and lots of my friends seem to think it can do, but what I really hope for is that it gives me a bit more time with my DH and kids

    Mx

    Live and love each moment. Stage iv since 2009, liver, bone, lung, lymph and brain mets
    Dx IDC, Stage IV, Grade 3, 0/16 nodes, ER+/PR+, HER2-
  • blainejennifer
    blainejennifer Member Posts: 441

    Tillycat,

    Such good news. Looks like Taxol is going well for you!

    I know we aren't in it for a cure, but what the hell, this feels pretty good.

    Still resolutely bald,

    Jennifer

  • Tillycat
    Tillycat Member Posts: 57

    Hi Jennifer

    Sorry - didn't mean to sound all negative, it's just hard when family and friends do high fives and happy dances and say 'this is the chemo that's going to kick your cancers butt' - somehow it makes me feel sad rather than happy, not even sure why really

    However, as you say, it's good when it's working. Maybe I should just be a bit more cautious about what and how I tell people from now on

    Melissa x

  • blainejennifer
    blainejennifer Member Posts: 441

    Melissa,

    I didn't think you sounded negative at all. I totally understand where you are coming from. My son (13) thinks this chemo is going to cure me. I'm taking my time with leading him to the truth. It's hard enough being 13 without worrying about your Mom dying.

    Hoping to get enough time to pull this one off!

    Jennifer

  • blainejennifer
    blainejennifer Member Posts: 441

    The night after the taxol infusion: 1:30M and I'm Up, Up, Up.

    Dang steroids!

    Can't do anything noisy cause everyone is asleep. Though, I actually feel like vacuuming. Weird, right?

    Not even slightly tired.

    Jennifer

  • Angelfalls
    Angelfalls Member Posts: 83

    Great news, Tillycat! Taxol may not be the cure, but if it can get us a date with Reggie, the Stable Boy or NED, it's got to be good stuff, hasn't it? Enjoy the moment.



    Jennifer - I had no. 15 this week and my hair has started growing back in the last week or so. I know what you mean about the steroids; I usually get to sleep between 3 and 5:30 a.m. the night after chemo. But if they stop the sickness and allergic reactions, I can live with a late night here and there! But it is always weird to want to clean... You might want to get that checked out! ;o)



    Hope you can all have a great weekend. xx

  • puffins
    puffins Member Posts: 9
    Hi Everyone,After trying faslodex for 6 months with diminishing results, I'll begin the weekly taxol protocol next Tues. I'd tried an aggressive TAC (taxotere) round of chemo several years ago after my MX, and could not tolerate it. I told myself then that I'd never do more chemo...never say never, I guess! Hopefully the lower dosage of taxol alone will be more tolerable and still have good results! It is encouraging to be reading your stories and reports. Hugs and blessings,Shoshanna  
  • Angelfalls
    Angelfalls Member Posts: 83

    Hello Shoshanna,



    Welcome to weekly Taxol, though I'm sorry you've had to join us.



    I had 4 cycles of Taxotere at initial dx, but have found the weekly dose of Taxol to be far easier to tolerate. I hope you'll find the same, too, and that Taxol will be tough on your cancer but gentle on you.



    Keep us posted,



    Angelfalls

  • blainejennifer
    blainejennifer Member Posts: 441

    Shoshanna,

    Weekly is much kinder than dose dense, and gets better results. What's not to love?

    Could you tell more about your experience with Faslodex? By the gleam in my Onc's eye, I think he wants to try me on that if/when I get stable with the Taxol.

    Jennifer

  • puffins
    puffins Member Posts: 9

    Jennifer,

    I tolerated the faslodex very well with only a little joint stiffness and muscle ache. For the first scan after several months, it had stopped liver progression in its tracks. We rejoiced! The second scan showed a lot of progression, however, so we are switching to taxol for awhile. The shots in the tailfeathers are certainly humbling! The suggestions posted elsewhere on these boards for best positioning for the shots are helpful. My onc hopes to get me back on faslodex (or something similar) for maintenance after 4 rounds of taxol to beat the beast back to a stable state. 

    Had first round of taxol today and it went well. Thanks to everyone for your encouragement. Now at 10 pm I've got the steroid wide-awakes (expected that!). 

    Best wishes to all,

    Shoshanna 

  • jlmacy
    jlmacy Member Posts: 2

    Hello My Taxol Buddies

    I finished my third round August 10 and other than a really bad hand rash I have been doing well. I had scans yesterday morning and had a follow up appointment scheduled with my oncologist in the afternoon. I got a call from her nurse to let me know the scan results before my appointment.  It is working!!!!! My largest lung nodule measured 3.0x1.9 in May and is now 1.4x1.1. All the enlarged lymph nodes "have markedly diminished in size"! I am beyond thrilled!

    We discussed changing to Abraxane to see if the hand rash improves, but I was able to get into the dermatologist down the hall (an arrogant South African SOB, by the way). In his opinion, since the Taxol is working, I should stick with it and try to manage the rash with prescription steroid ointment and diligently not exposing my hands to the sun.

    My plan is to get through three more cycles, see what scans show, and maybe take a break for the holidays. My oncologist concurs.

    Anyway, in light of all the bad news we have seen the last several days I am excited to share something positive.

    Take care everyone,

    Joanie

  • Angelfalls
    Angelfalls Member Posts: 83

    Just wondering if anyone's feet are peeling on Taxol... The soles of my feet are really losing their skin, though they aren't sore at all. Is this a usual SE?

  • blainejennifer
    blainejennifer Member Posts: 441

    Mine peeled about two cycles ago. It was a weird SE.

    Other than that, I've just had the usual day three fatigue. The Onc wants scans on Monday, as I've done 8 weeks and he'd like a peek.

    I'm too tired to do stuff and wildly bored at the same time. Big Fun.

    Jennifer

  • Angelfalls
    Angelfalls Member Posts: 83

    Thanks, Jennifer. I hadn't heard of this SE for this chemo, so it helps to know I'm not alone! Good luck with your scans. I've got a CT on Friday, but won't get my results until 4th Sept. as my onc is going on holiday... Aaaaargggghhhhh!

  • blainejennifer
    blainejennifer Member Posts: 441

    Good Golly, that's a long time to wait! Can't she hand it off to a PA or other doc in the practice?

    Best wishes to all the other weekly taxol folk. I keep losing hair, though I still have a sprinkling left. 

    Jennifer

  • Angelfalls
    Angelfalls Member Posts: 83

    If only, but it doesn't work that way in my cancer centre. So I just have to grit my teeth and wait...

  • blainejennifer
    blainejennifer Member Posts: 441

    Just got back from CAT scan day and a visit with the Onc. My TMs are now 757 (down from 2,600). Last week, they were 1,500. So, I'm liking the Taxol!

    As to the comparatively high numbers, he said that counts are individual and can't be extrapolated to another patient's counts. My 757 could equal someone else's 300. I don't quite get how, but was too giggly to pursue it in depth.

    No new lesions, and most of the visible lesions are healing nicely. I know it won't always go this well, but I'm going to enjoy it for now. And, I got him to skip the finger stick, and get my counts from the port. Yippee.

    Hope everyone is feeling well.

  • Angelfalls
    Angelfalls Member Posts: 83

    Great news, Jennifer! I hope you'll continue to get great results from Taxol for a looooooooong time.

  • puffins
    puffins Member Posts: 9

    Congratulations Jennifer! It's wonderful to hear your news!

    By the way and speaking of SEs, is neuropathy of the taste buds related to taxol, or maybe it's the Zometa. Anyway, everything tastes like cardboard.  Undecided No peeling on the feet (after 2 weeks).

    Gentle hugs to my taxol friends! 

  • blainejennifer
    blainejennifer Member Posts: 441

    Just checking in with everyone. Taxol #9 all done - don't know how many I'll do, so it's 9 out of ?. It's day three, so I'm draggy as hell.

    Still bald, and I've gained 6 pounds since Taxol #1. Dang steroids! They really seem to amp up my sweet tooth.

    TMs down to 757, from 2,600. Scans good. Cancer still confined to bones, no new lesions, and old lesions are healing. My Onc - a very low key fellow - actually smiled.

    Ode to Hill Street Blues: Let's get out there and kick some cancer fanny.

    Jennifer

  • Tillycat
    Tillycat Member Posts: 57

    I'm off to see my onc tomorrow - should get some idea how taxol is working and also if he wants me to continue- and if so at what dose/ how many doses per cycle etc

    I feel tired but definitely better than I did before I started so I'm feeling quite optimistic.

    Fingers crossed for some good news (or maybe just not bad news !)

    Tillycat

  • blainejennifer
    blainejennifer Member Posts: 441

    Tillycat,

    Hope you get good news at the Onc's tomorrow. Please let us know how things are going. I feel less tired now too than I did at the beginning of the Taxol. 

    #10 down, on to #11 on Thursday. Blood counts staying good, TMs going down. Started Lyrica for neuropathy and it seems to be helping.

    Shattered about Marybe, so signing off now.

    Jennifer

  • Lynwaz
    Lynwaz Member Posts: 2

    I adore weekly taxol. for me + avastin added week 2. Seriously.  Adore it.

    & just went NED. Having no hair? I did that for over a year- went to some websites & you-tubes that showed how to tie scarves (may have been for jewish &/or muslim women - I forget). Anyway- got creative and had a blast coming in with a differently-wrapped scarf every week. Plus earrings. Mustn't forget the earrings. Maybe I'm just lucky as heck but I didn't(don't) find Taxol 'difficult' thanks to premeds. Also be sure you're doing some sort of mouth-thing. I take Miles Mixture #4 (formulated by pharmacist) every 4-6 hrs during day...got rid of 'cardboard mouth' and also keeps your esophagus etc from developing mucositis.

    If you need to rest after chemo, rest. Listen to your body. I tended to ignore my body, pre-cancer- & kidded myself at first that I could continue that way. Nope. I have learned SO MUCH having Stage IV, & not all pleasant BTW.

  • blainejennifer
    blainejennifer Member Posts: 441

    Tillycat: Hadn't heard from you after your visit to the Ons. Whassup?

    Lynwaz:  How many weeks did you do Taxol before you got to NED. A girl can dream, can't she?

    Take care everyone,

    Jennifer

  • Tillycat
    Tillycat Member Posts: 57

    Oops sorry

    Should have reported in :-)

    So the good news is TMs are way down (they were 2711 now they are 1171)

    The less good news is the liver enzymes are still not looking good, but the onc says if I'm feeling better (which I am) then his feeling is the liver function is being affected by the taxol and that the enzymes will start to improve soon.

    So the plan is to continue with the 50% dose and cut back to 2 doses per cycle (so 2 weeks on then 2 weeks off) instead of the normal 3 on 1 off - this should be very gentle on my liver but will hopefully keep working on the tumours. If it doesn't he says we can always go up a bit.

    - and see what's happening in 4 weeks time

    I'm not yellow any more, TMs have always been quite accurate for me in the past and I feel a bit better so I have decided that overall its going well. Not sure I'm ever going to reach lynwaz's NED levels but well done for that!,

    How are you Jennifer?

    Tillyxx

  • formygirls
    formygirls Member Posts: 154

    Tilly,

    Great news on the TMs! I agree that this means it is working. Liver enzymes can be up due to chemo also. That happened to me in the past. The fact that you feel better, are not yellow and TMs are so down is all great. I was wondering about you and glad you posted an update.

  • RobinNY
    RobinNY Member Posts: 136

    Hi there!

    Faslodex has failed me and it looks like chemo will be in my future. I have a few questions about taxol please.....

    How long is the treatment ?

    If treatment is on Monday, is Wednesday the "hard" day?

    I did taxol during my primary treatment and it was so different! Thanks for any info.

    Hugs!

    Robin

  • blainejennifer
    blainejennifer Member Posts: 441

    Robin,

    To be honest with you, I'm tolerating the weekly Taxol better than I tolerated Tamoxifen. It gave me shocking joint pain, so when it failed me, I wasn't totally shattered. Well, I was, but I'm seeking the silver lining!

    My hard day comes on day 3 or 4 after treatment. Though, the last few treatments aren't kicking my ass as much. Maybe I'm getting my Taxol legs, or maybe I'm healing up. I don't know.

    The day of treatment is the hardest for me, as the steroids cause me to feel jittery, and I don't get to sleep until 3:00 or 4:00AM. Yuck. And, beware of how hungry the steroids can make you. I make sure to have lots of good fruit and veg on hand, as I want to eat all the time for the 2 days following treatment.

    Your first Taxol treatments will take about 4 hours, as they do a slow drip at first to make sure you don't get any adverse reactions. I just finished my 10th, and it took about 2 hours start to finish.

    They start with Decadron (steroid to keep you from getting barfy) and Famotidine (proton pump inhibitor to suppress stomach acid). That takes about 15 minutes. Then they throw in the Benadryl (15 minutes), and then it's time for the Taxol. I tried the hour drip, but it gave me a headache, so I do the full dose in an hour and a half now. No headache, and time enough for a good nap after the Benadryl.You'll get the three hour drip at first. They'll try whittling the time down on each successive treatment, depending on how well you tolerate the Taxol.

    Now that kiddo is back in school, I get chemo in the morning, then take the rest of the day for myself. No chores. I'm back on duty after school pick-up.

    I'll be on Taxol for the time being. My TMs are dropping every week, and I think we are going to try the stronger anti-hormonals next.

    Good luck to you. Truly, the weekly schedule is so much kinder than dose dense, and more effective too. Good times.

    Jennifer

  • RobinNY
    RobinNY Member Posts: 136

    Jennifer

    Thanks so much for all the info. My choice will be between Xeloda and taxol. When I did taxol originally, it was a 5 hour day at the hospital and I slept the first 90 minutes after the Benadryl. Sounds like you are driving yourself to and from treatments....that's encouraging too. My days off work are Sunday, Monday and Wednesday ...trying to figure out which day would be the best for treatment (if there is choices). I wasn't hungry at all the first time around, I wonder if they did as much with the steroids then. Anyway, thanks again and many blessings to you and continued success with your treatments.

    Hugs!

    Robin

  • mw900
    mw900 Member Posts: 9

    Lynwaz,

    I totally agree, my tx on Taxol was easy & I felt so much better after every treatment. When I began I was on oxygen and could barely walk up a flight of stairs. I had the on for 3 weeks off 1 week plus every other week of Avastin for 13 cycles. My MO said I'd be on chemo as long as it worked. Well, it worked so well that after 13 cycles my lung mets had shrunk so significantly I have been able to off chemo and on tamoxifen only (well, tamox + Areidia) for the last 2-1/2 years. Of course during checmo I had no hair, and I slept most of treatment day, but I was able to work 4x week (desk job) and basically have a good QOL.

    Wishing good luck and easy treatments for everyone.