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Weekly Taxol for Stage 4

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Comments

  • anotherone
    anotherone Member Posts: 555

    :(,leftfootforward.. parenting suffers . I asked school for help and filled in social services referral form for parenting help...

    Question- with chemo induced diarrhoea is there anything better than loperamide to take ? As I have read loperamide reduces intestinal movement thus increasing time for water to be absorbed - is there anything to increase water absorption directly ?

  • pboi
    pboi Member Posts: 148

    Leftfoot...come here and vent anytime. As more time passes...the level of fatigue seems to be increasing. So frustrating. Although at times I have wondered if it's Taxol fatigue or the latest cold my kids have brought home from school. Hoping you got a good nights sleep last night and more energy today : )

    Anotherone...hoping you find a way to manage the diarrhea. Sorry I can't be of any help...I have the opposite problem chemo induced constipation.

    PB

  • anotherone
    anotherone Member Posts: 555

    thank you pboi.

    Mine is not too bad - felt bloated and sick/ish yesterday, could not eat - I already knew it was all that liquid sloshing in my intestines instead of being absorbed ( I can feel my skin very dehydrated and lips and I guess brain and other bits as well) - had 2 episodes this morning, felt better after, eaten , it has not happened since. But with feeling not great in general or certainly does not help ..

    Olive oil does not help you ? Or is it a stupid question ?

  • pboi
    pboi Member Posts: 148

    Olive oil for constipation? I’ve not tried that before. Taxol really dries me out, and that’s why I think I get constipated. Luckily for me it’s not bad...I’m drinking extra water and walking a lot to try to keep things moving, and that seems to work for me.

    PB

  • anotherone
    anotherone Member Posts: 555

    yes if it is mild then 1 spoon daily could/ should make a difference. Added benefit of geung hood for one specifically with cancer. Abraxane dries me up as well - because all that water is not absorbed but is lost with diarrhoea!Sad

  • Lily55
    Lily55 Member Posts: 1,748

    Hi Lynne

    Aromasin was by far the easiest anti hormonal for me......it works in a different way to the other two....

    Hope it's good for you too..

    ...we don't get any such tests here


    X



  • Sophie_7
    Sophie_7 Member Posts: 3

    I am so happy to see that you have survived for seven years! I have the same diagnosis.i have been metastatic for 4 years now. In November 2015, my oncologist told me the data suggested that I had 1-3 years to live. I just hit the four year mark. Thank God!


    I am starting weekly Taxol as my next treatment option. I don’t know what is left after that as treatment options. That may be it. I will keep you in my prayers!

    Janne1

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622

    Hello,

    Have had weekly Taxol since August. Anyone here experiencing jaw pain, toothaches, ear pain and headaches?

    Pretty much ruled out ONJ from Xgeva.

    Thanks, Mary Jane

  • pboi
    pboi Member Posts: 148

    Hi Mary Jane,

    Have had similar symptoms without the jaw pain. Turned out to be sinus related issues. Any possibility you might have sinusitis?

    PB

  • cowgal
    cowgal Member Posts: 625

    I am wondering about jaw and tooth pain too. I have a lot of allergies so mine could be related to that. Has anyone had the jaw problem with XGEVA and if so how did it feel...was it constant pain, occasional?

  • anotherone
    anotherone Member Posts: 555

    sounds very much like tooth related problem. see a dentist .

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622

    Thank you for your responses.Saw my dentist yesterday and all is OK. Saw MO today. His patients on Vincristine report similar symptoms which are caused by neuropathy. He has not seen this with Taxol. I did find a chat on another site with 2 people reporting these symptoms with Taxol. He is putting me on Gabapentin in hopes that it will ease symptoms. He says could be a deal breaker with Taxol if QOL goes down, but I will put up with a lot because Taxol is working. Off Xgeva right now til things settle out.

    Thanks again, Mary Jane

  • 50sgirl
    50sgirl Member Posts: 2,071

    Mary Jane, I haven't seen you post much lately. I hope your jaw, tooth, and other pain subsides soon. As you know, neuropathy is not something to ignore, so I hope that Gabapentin relieves the symptoms. I came across the picture I took last year when we were in Portsmouth. The memories are bittersweet. I would like to get together again once the winter is over as long as we are both feeling up to it. Claudia asks about you when I talk to her. I am sure you are very busy with holiday preparationsthese days. Have a wonderful Christmas.

    I see that some of you who posted when I was on Taxol are still here on this thread. I hope you are doing well and That you as well as the newbies. respond well to Taxol for a long time. For the newbies, I was pleasantly surprised about my experience on this treatment. Other than hair loss and anemia. I suffered no significant SEs until just before Taxol failed. I was on it for 9 months. It is tolerable.

    Hugs and prayers from, Lynne


  • daywalker
    daywalker Member Posts: 77

    Hi all, I have learnt so much from all your posts, and found it very helpful. I have a question around taxol and diarrhea .. I am approaching my 18 and final session next week, and depending on scans next month we will decide whether to only use faslodex and herceptin for maintenance.

    ..anyways, my question is whether anyone has found taxol induces diarrhea only later on in treatment? I've had no tummy issues all this time, then BAM few days ago my stomach started going all wild west on me! I should add that I took copious amounts of barley grass last week, man did I have a lot of energy! So perhaps the chemo plus barley messed things up? Any shared experiences will be much appreciated xx

  • LoriCA
    LoriCA Member Posts: 671

    Daywalker I had no problem with Taxol for months, then all of a sudden after one infusion I had uncontrollable explosive diarrhea for a few days. After each successive infusion it got worse and lasted longer. My MO thought it couldn't be related to Taxol because I had been tolerating it so well & Taxol shouldn't cause it. We tried some other meds thinking maybe it was some kind of bug, but the pattern was clear that it always started 24 hours after my infusion. When I moved to 3 weeks instead of weekly, it was so bad that it was happening every 15-20 minutes all day long, I couldn't even take a sip of water without problems for weeks (and probably should've been in the hospital for IV fluids but I was too sick to move and who wants to ride in a car with uncontrollable diarrhea every 15 minutes), and it took 6 weeks after stopping Taxol before the problem resolved. I stopped Taxol because I couldn't live that way, I was literally spending my life on the toilet and in pain from horrible cramping & spasms. No explanation for why I tolerated it so well for months, then all of sudden my body went haywire. When we tried Taxol again a year later I had no problems with it at all.

    I hope your problem is related to the barley grass and not what I experienced, but if it continues to get worse after every infusion, it's something to think about.

  • daywalker
    daywalker Member Posts: 77

    LoriCA, thanks so much for your response! I also hope it's just from all the grass I drank, but we'll see...I'm glad that your next Taxol experience was better!

  • pboi
    pboi Member Posts: 148

    Hi Lynne...Good to see you here...still on Taxol, but side effects are creeping up. Hope the A/A combo has been going well for you.

    Daywalker...When I first started Taxol I had no diarrhea whatsoever, in fact constipation was more of an issue. But after about a year on Taxol, suddenly I started getting very mild diarrhea from about days 3-5. I found it very strange that it just started one day after so many months on Taxol, perhaps it's some kind of cumulative effect of damage to the digestive tract over time?


    PB

  • s3k5
    s3k5 Member Posts: 411

    My mom had uncontrollable diarrhea with Taxol after about 3 cylces. The MO kept saying it was not due to Taxol. and she turned out to be right.

    My mom was hospitalized due to irregular heartbeats (unrelated to taxol) and the attending doctor ordered cDiff test which came back positive. She was put on antibiotics via IV and the diarrhea resolved. She continued with the next cycle of Taxo with no problems.

    I don't think c. Diff infection is common among everyone but it may be worth it to get tested just to rule it out. The infectious disease specialist said that the Taxol lowered my Mom's immunity so the lingering cDiff in her body had time to multiply and grow, causing diarrhea.

  • Cvark
    Cvark Member Posts: 6

    Hi all! I had my first Taxol infusion yesterday. Still feeling good on my steroid high! But just noticed my face is bright red. Is this a common side effect? Not sure if it’s normal or an allergic reaction. Cheeks are warm but no swollen...let the fun begin!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    Cvark— I always got that red face while on Taxol. For me, it was a side effect of the steroids. Hope that is all it is for you, too

  • pboi
    pboi Member Posts: 148

    Cvark...I get the facial flushing the day after infusion, and for me too it was due to the steroids. It should be gone by tomorrow, as the steroid crash begins.

    PB

  • Cvark
    Cvark Member Posts: 6

    Just saw this. Thanks so much for the reply. It’s gotten better and now I know to look for it!

  • Cvark
    Cvark Member Posts: 6

    Thank you! I think that’s fdefinitely what it is

  • Cvark
    Cvark Member Posts: 6

    Hi all! I’ve had three weekly infusions and one week off the taxol. All is going well. Hair started shedding after week two. It’s all gone now. I just got back my first monthly 27/29 antigen. It’s double what it was a month ago before I started taxol. Did anyone else have a spike and then reduction with the antigen. Besides my hair it is the only information I have at this point to see if it’s working and an increased number is disappointing. MO suggests continuing second month of treatment, taking marker again in a month and possibly 2 month scan instead of waiting 3 depending on where it is in four weeks. I feel so much better on taxol then I did on Xeloda. I’m praying it’s working!

  • leftfootforward
    leftfootforward Member Posts: 1,396

    Clark- I would give it a little more time. But it b is you driving the boat. If you want a change earlier- ask. If you want to wait a bit- wait.

    I am hopeful it works for you. One month is not a long time for a new treatment.

    Tumor markers were never an accurate picture for me as to what was going on. Lots of things can cause them to go up or down besides if cancer is growing. If it were me, I’d wait to see if there were a continued trend befire before I worry. My markers would fluctuate up and down at s as my given time. I only turkey worried when they kept going up 2-3 times in a row. But BBC that’s me.


    ha hung with you and hoping for the best.

  • Cvark
    Cvark Member Posts: 6

    Thanks so much for the reply! Hubby had me freaking out last night but I agree one month is too soon to know anything and I need to give this a chance to work. MO is on top of it and I’m feeling good so I’ll take that as a positive for mow

  • Cvark
    Cvark Member Posts: 6

    Just left MO. No infusion today. Platelets are 68. TM is up again as well. Now 1100 up from 795 four weeks ago. It was 484 when I started Taxol. So PET scan on Tuesday to see what is going on. Hoping everything still bone only. I was/am so hopeful for the Taxol to knock it back.

  • moth
    moth Member Posts: 3,293

    Hi everyone - just found this thread. I get "sort of weekly" taxol. I'm in a clinical trial. I get Taxol 3 weeks on, 1 week off & on 2 of the "on" days I also get immunotherapy. I'm icing through the taxol (I did that when I was stage 1 as well) but now with covid19 my dh isn't allowed to come in with me and I think I'm not doing as good a job on my hands. My nails are sore & I'm getting the tiniest bit of numbness on my fingertips. We're tinkering with the icing routine, I'm getting a different cooler (because on the immunotherapy days that goes first & then the taxol premeds; by the time we get to taxol, my icepacks are not as cold as they need to be in my old cooler) and I might switch out every 20 min instead of every 30.


    Does putting on the dark nail polish really help with nails? Or is it one of those might help, won't hurt things?


  • ipenelope
    ipenelope Member Posts: 233

    Moth- Are you getting Abranex?? If so we are getting the same treatment. What side effects have you had with your treatments?

    ~Katie 💗

  • moth
    moth Member Posts: 3,293

    Hi ipenelope, no, I'm getting regular taxol in this clinical trial. My MO said one of the arms of a previous phase trial tested taxol vs abraxane and didn't find a difference so in this phase 3 trial they're using taxol

    I have tons of fatigue. With me it's hard to sort out what is due to treatment and what is due to the liver mets. My Hgb keeps dropping but thats probably the liver. Chills, sweats, random fevers. Some days I'm just laying around in bed all day cause I just feel so tired and plain old "sick"


    How about you? What symptoms are you experiencing? When did you start this combo?

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