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Weekly Taxol group

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Comments

  • erin_t
    erin_t Member Posts: 31
    edited May 2019

    I talked to an actual oncologist today who said if the fatigue was bothering me that much after 8 treatments, he would support my stopping now. This is a friend of my father's who is familiar with my case. So tomorrow (my treatment day) I'm going to go and tell them I want to stop. I have to go anyway cuz I'm due for lupron.

    I know people keep saying what if it comes back, you don't want to say you didn't give it your all. But i feel like i have given it all. I've already fainted once and almost fainted a few other times. I'm getting into bedpan territory with the fatigue. I need to stop. If there's no obvious medical reason i can't then I'm going to.


    I called my own MO but of course no call back. So just find out tomorrow.

  • kber
    kber Member Posts: 243
    edited May 2019

    Erin for what it’s worth, my oncologist stressed getting 6 under my belt. After that it’s diminishing returns. You did great! You went as far as you could under tough circumstances. Peace.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120
    edited May 2019

    Erin, taxol was tough on me too. FWIW,I asked my MO to reduced my dosage, and we went with 80% for my last 3 treatments and I believe it really helped me to finish out the 12 weeks. Fatigue was very heavy the last 2-3 weeks, but I’m feeling better much better with round #12, which I had yesterday. My last round! So glad to be done with chemotherapy!


  • kber
    kber Member Posts: 243
    edited May 2019

    Angie - congrats!  I know you've had a tough road and complications, but you did it!

  • ingerp
    ingerp Member Posts: 1,515
    edited May 2019

    Congrats Angie!! That's a wonderful milestone!!

  • margun
    margun Member Posts: 385
    edited May 2019

    I have several questions:

    I just started taxol. Some fatigue, some achy bones muscles some discovery in ovarian area and in belly in general. Not fun but bearable. In some post I read that it is becoming much worse after 4-6 treatment so much wors that for some it is becoming impossible or too hard to continue. Are there some people that felt not that much worsening with cycles? Please write to me because it is discouraging to see that is this bad at the end

    Once the treatment is over how often a check up is conducted and how. Her2positive is systemic cancer and I do not think a mammogram that checks the breast only will be sufficient?

    On another forum I saw some people removed their ovaries for precautionary measures. There is perhaps some connection between these cancers

  • nanette7fl
    nanette7fl Member Posts: 412
    edited May 2019

    ANGIE!!!! (((HUGS)))I know how relieved you are to finally be done with taxol!!! Wow what a stretch you had! Here's to hoping and praying you don't get that sick again. So what's next for you??

    Margun,each of us had different SE's but yes the fatigue compounds. Getting yourself up and moving around helps. I was assigned walking to my mailbox (200 ft from the house) at least 4 times a day. I believe it helped. I don't know about the ovaries, someone else will have to field that one as I'm 4 yrs post menopause. They not to worry what's down the road and take each day and each week as it comes. You may surprise yourself 8)

  • kber
    kber Member Posts: 243
    edited May 2019

    Margun - one tactic I found very helpful in fighting fatigue was hydration.  I was exhausted after taxol 8 &9. but then added in extra IV hydration for 10, 11 and 12 and it made a noticeable and positive difference in my energy levels and my nausea.  

  • ipenelope
    ipenelope Member Posts: 233
    edited May 2019

    Margun- I slept through my Taxol runs due to the Benadryl they gave me. My worst days were 5-7 with fatigue and muscle aches. I found drinking Gatorade the day of treatment and for 2 dats after seemed to help. I've worked through all of treatment and I think that helped me not get the SEs as bad as some or maybe I was lucky and just didn't get then as bad. Kber makes a great point, stay hydrated it really helps!!

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    Kber, are you done with Taxol? I haven't experienced any new side effects but have only had 3 doses. I haven't had the fatigue I did with AC. I'm staying hydrated and walking 10K steps a day.

  • Yndorian
    Yndorian Member Posts: 236
    edited May 2019

    Angie, you did it, congratulations!

    Erin - if this MO said that you can stop, and you want to stop... I think that other people opinion doesn't matter. In the other hand, I had a very bad time with taxol but I need to say that 16 days PFC I'm better. In case you decide to complete your treatment you need to know that your suffer will pass. Send you hugs

  • kber
    kber Member Posts: 243
    edited May 2019

    Hi Dawn - yes I finished taxol 2+ weeks ago.  I had carboplatin at the same time, so some of my side effects were magnified by that double whammy.  

  • Kkmay
    Kkmay Member Posts: 89
    edited May 2019

    Hi ladies!

    Did anyone experience acid reflux while on taxol/carbo?

    My mother suffered acid reflux during AC once, and now during taxol and carbo.

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    Congrats kber! I have 57 days, 22 hrs and 6 seconds to go. Lol

  • kber
    kber Member Posts: 243
    edited May 2019

    Hi kkmay - I did.  I got something in my drip for it and my MO recommended Prilosec, which I didn't take.  Couldn't face one more medication  I found plain old Tums worked pretty well, actuall, and I only took it as needed.  

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120
    edited May 2019

    Thanks everyone! Taxol was tough! Glad I’m done with it! Next up, hormone therapy. Most likely tamoxifen. Already had surgery and recon on same date back in September and radiation treatments in October and November 2018. Started chemo on Christmas Eve. So, overall it’s been nearly 8 months of active treatment. 9 months if you count diagnosis in August. In a way, feels like I’ve given birth to myself! You can say, we are reborn after this experience! It has been an overwhelming experience! And I feel stronger for it.

    For those still going through treatment, hang in there. It definitely can tear you down. But, if you stick it out, get as much rest as you can and get up each day, you are making it! Talk with your Mo and nurses regarding SE’s, they are there to help.

    Wishing everyone well! Hugs!

  • sparklegirl2018
    sparklegirl2018 Member Posts: 39
    edited May 2019

    Hi everyone,

    I start the first of 12 rounds of Taxol tomorrow. So glad to be done with the AC part! I have gone back and read prior posts here to prepare Happy I am going to ice my hands and feet as a precaution. I bought the socks on amazon that you put the gel packs in and am just going to hold a gel pack. I figure it won't hurt and might help! I think I will ask for a bag of fluid at the end also. Again it can only help! And I am not a good hydrator Winking

    Congratulations to those that have finished and those that are almost done!!

  • Lily55
    Lily55 Member Posts: 1,748
    edited May 2019

    Kber - did your oncologist mean 6 cycles or 6 sessions ? My oncologist won´t reduce dosage as she says it doesn´t work ´what is a normal dosage in ml??


  • Mncteach
    Mncteach Member Posts: 241
    edited May 2019

    Congrats Angie! Erin, I hope you are feeling better and your MO agrees to stop. Kkmay— I had acid reflux and had to get something stronger prescribed. I only had 4 dose dense taxol and while fatigue was real and difficult, working through it really did help. Moving in whatever form and distractions were what kept me going.

  • kber
    kber Member Posts: 243
    edited May 2019

    For me, Taxol was weekly for 12 weeks, so he meant 6 sessions or 50% done.  

  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2019

    Taxol dosage, I was told, is calculated according to weight. Actually, an estimate of skin surface area based on weight and height.

  • margun
    margun Member Posts: 385
    edited May 2019

    I woke today for 30 min. Underneath if one foot is refuse and sore. I put some cream but do not know if there are other more effective things to heal it . Thank

  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2019

    Am not sure what you mean, but my doctor told me that toew with damaged toenails are prone to infection. Soaking them in hot water with vinegar and Epsom salts can help with that. Infection needs to be taken seriously when you are on chemo.

  • erin_t
    erin_t Member Posts: 31
    edited May 2019

    Well, my MO did not agree to stop, but he gave me a week off and said we could make a final decision at the actual appointment next week. He said he wouldn't want to see me back again in 5 years wondering if the last 4 treatments would have made the difference. He also said there was no data about stopping early and that he only stopped early in the cases of neuropathy, fever or infection.

    So that's the same thing everyone has said. But the fact is, I could have a recurrence in 5 years anyway, or I could not, and we wouldn't know why. And the other MO, the family friend, is much older than my MO and his opinion is that it's common sense that if it's making me this miserable at this point, it's ok to stop as I've gotten most of the benefit.

    So that's all just great. I sure do want to stop. I feel like I've had enough. But my doctor is making me feel like I'm signing my own death warrant.


  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2019

    They see too much death, but it is your life.

  • Yndorian
    Yndorian Member Posts: 236
    edited May 2019

    Erin, I just wanna say that taxol was a nightmare to me, it isn't easy for anyone, but I'm 16 days PFC and I'm feeling a little better every day. Of course is your decision and y understand you are having a very bad time but the nightmare is not forever. Think it well

  • Mncteach
    Mncteach Member Posts: 241
    edited May 2019

    Erin— it’s so hard to see the light at the end when you feel so bad. Hopefully a week off will help, if not, insist on doing what you feel is right.

    I had my last treatment last week and am starting to feel normal, even though as I type this I am lying in bed before 8pm!

  • margun
    margun Member Posts: 385
    edited May 2019

    I heard here about neuropathy and fatigue after taxol but is the bone ache also known se?. I have it on and off in particular st one spot in my lower leg and in my toes of the same foot. I have also body aches on and off and today in liver areas. All these worries me too much and if someone experienced them it would me it is also due to taxol. Thanks for your re

  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2019

    Margun try some pedialyte or gatorade. I have two cloth bags loosely filled with rice/beans. I nuke one for three minutes, and that heat takes care of a lot of pain. Tylenol or ibuprofen are also great. You don't need to diagnose the pain, just do what is necessary to reduce it, and ask your doctor when you see her again.

  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2019

    Margun try some pedialyte or gatorade. I have two cloth bags loosely filled with rice/beans. I nuke one for three minutes, and that heat takes care of a lot of pain. Tylenol or ibuprofen are also great. You don't need to diagnose the pain, just do what is necessary to reduce it, and ask your doctor when you see her again.