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Weekly Taxol group

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Comments

  • roadwarrior28
    roadwarrior28 Member Posts: 161
    edited September 2012

    Hi all - I'm new to this group. So it's been 4 days since my first Taxol treatment, and I'm experiencing some weird side effects - was wondering if anyone else has been through this. I don't have the burning/tingling sensation that I've heard of with peripheral neuropathy. Instead, I just have some pain in my feet and hands...sort of feels like I've been typing too long. I also feel like my left hand is swollen - I had trouble making a fist when I woke up at night. Also experiencing some back pain...

  • mgdsmc
    mgdsmc Member Posts: 28
    edited September 2012

    hi Roadworrior28

    I havent had any real issues with the taxol but i know that some people discribe the feeling of neuropathy as painful. Sometimes the numbess and tingling can feel like being stab with needles. Does your your fingers and feet feel swollen than go back to normal? Thats one part of neuropathy. Just open and close your hands when you start to feel they are swelling and buy ted hose for your feet and legs. I use knee high teds and i think that why i never experienced that sensation. I just had taxol number 10 today and for the first time my finger tips feel a little big so i keep opening and closing them, no pain numbness or tingling. Call your MO nurse tomorrow and ask her if that normal just to be sure.

    Hope this helps :) 

  • sugarlandIDC
    sugarlandIDC Member Posts: 2
    edited September 2012

    RoadWarrior28....I'm starting Round 2 tomorrow, this week, I've had boughts of blurred vision and moderate joint pain. Pretty tired....hopefully you'll have an easier road, many seem to. I too had a double mastectomy (8/3) and tissue expanders but am doing Taxol before FAC. Good luck to you

  • whaevah
    whaevah Member Posts: 282
    edited September 2012

    roadwarrier yes, I have all those SE's. I am taking Glutamine 10g X 3 per day. It really helps me. I had facial neruopathy from AC (sensitive mucus lining) and it really worked!

    Taxol #3 done...YAY

  • Graceembraced
    Graceembraced Member Posts: 86
    edited September 2012

    Just completed my 8 out of 12 Taxol. They were having trouble getting blood from my port, finally got it then an hour later there wasn't a good sample to get platelet count so they drew mire blood from my arm. Has that problem with a port happened to anyone else?



    Then they pushed my Taxol through faster than before ... I have not had an allergic reaction yet but am so much more tired than usual.



    But I don't sleep the night I have the steroids...running in circles sometimes.

  • Graceembraced
    Graceembraced Member Posts: 86
    edited September 2012

    Just completed my 8 out of 12 Taxol. They were having trouble getting blood from my port, finally got it then an hour later there wasn't a good sample to get platelet count so they drew mire blood from my arm. Has that problem with a port happened to anyone else?



    Then they pushed my Taxol through faster than before ... I have not had an allergic reaction yet but am so much more tired than usual.



    But I don't sleep the night I have the steroids...running in circles sometimes.

  • MandalaB
    MandalaB Member Posts: 52
    edited September 2012

    Taxol 10 is Tuesday.

    My nails are just now starting to get ugly looking. I keep them polished so I don't have to look at them...
    Otherwise feeling ok- just tired a lot lately.

    My fingers are numb- but I am still able to do things like thread needles, detangle ipod earbuds, and dress my small child.
    Last week I woke up 5 days post  taxol and had all this crazy energy- I sewed myself a skirt and then drove 3 hours to Pennsylvania with the husband (he's a gigging musician) for a music festival he played that was outdoors. And I danced my butt off.
    The next day ...my poor legs. But it felt great to feel somehwat human even for a few hours. I had a great time.

    I don't have that energy today.
    Maybe tomorrow!
    ?
    lol.

    almost over...... the last 3 weeks feels like when you are driving down the highway and you have to pee so bad and there's no bathroom for another 40 miles. It's the longest 40 miles/3 weeks ever. lol.
    ...almost over

  • Toastiecat
    Toastiecat Member Posts: 13
    edited September 2012

    Hi there,

    Started Taxol yesterday. I was nervous about the allergic reaction, but it went fine. I'm still pretty manic from the decadron. Took Ambien last night, but it still took my a while to go to sleep, and I slept a few hours less than I normally do. Feeling okay this morning. My face is red and hot! Pretty funny looking. I hear it's called the "chemo glow."

    I'm going to get a pixie cut today in preparation for losing my hair. My onc thinks I won't lose it until the end, but it seems like most women on here lose it at around 3 weeks...so we'll see.

    Has anyone taken advantage of the Look Good Feel Better program?

    Hope everyone has a good day, with no SEs...

    xoxo

  • whenlifegivesyoulemons
    whenlifegivesyoulemons Member Posts: 8
    edited September 2012

    CNN is airing a segment on advancements in cancer treatment (interviews docs from Anderson Cancer Center).  I think someone else mentioned seeing Sanjay Gupta talk about this earlier in the week.  It's on today at 3:30 central.  I'm sure it'll be rebroadcast too.

  • whaevah
    whaevah Member Posts: 282
    edited September 2012

    Toastiecat I enjoyed The LGFG program . If you have the time, why not! I met some lovely women, the gifts and tips were nice.

    Taxol #4 next week, hoping for less aches this time around 

  • hydros_wife
    hydros_wife Member Posts: 3
    edited September 2012

    I just started getting itchy bumps on my hands on Saturday night, and my first Taxol treatment was last Monday. Luckily, they fade after awhile if I leave them alone. I did apply a cold water bottle to the side of one that developed on my middle finger this afternoon while I was at a function with my daughter, and it seemed to help. The itchy bumps just pop up suddenly and then fade, but I'm noticing more and more little bumps that don't itch on my hands now. I'm going to try putting ice packs on my hands for awhile to see what happens. My next treatment is tomorrow, so I am also going to mention it to my oncologist when I visit with him before the treatment.

  • mgdsmc
    mgdsmc Member Posts: 28
    edited September 2012

    Hello All

    I had my 11th taxol yesterday and for the first time my hands and feet are cold no pain or numbness so far. Still have my peach fuzz, eyebrows and lashes but I know that could change at anytime. Nails still discolored but not lifting break easily so keep polish on them. Other than that looking forward to Tuesday getting my last treatment.

  • MandalaB
    MandalaB Member Posts: 52
    edited September 2012

    Taxol 10 done. 2 more to go.

    I'm finding myself feeling like I'm wading in the bottom of the well- almost 5 months of chemo at the end and my body has just had enough. lol.
    I used to have a 'good day' the day after Taxol and that doesn't exist anymore.
    Just blah.
    Tired alllll the time.

    My fuzz is actually growing- but I see patches within the white fuzz of real hair.
    hasn't fallen out yet either.

  • Toastiecat
    Toastiecat Member Posts: 13
    edited September 2012

    Hello,

    Taxol #2 tomorrow.I came down with a bladder infection, which I read might be common with Taxol. Has that happened to anyone else? I haven't had one in years, so I feel like it's got to be it. Also, I had a weird feeling like my lips were numb, and then I realized that it's the feeling I get when I'm about to get a cold sore, but over my entire mouth! Gross. I've been slathering on the Abreva, and I think it's worked. Heads up to any cold sore sufferers!

    I went to the LFFB program, which was really nice! Definitely go if there's one in your area.

    xoxo

  • whaevah
    whaevah Member Posts: 282
    edited September 2012

    Toastiecat

    You might want to look into Glutamine 10g x 3 daily , for neuropathy. It is working for me . Mine started as facial. 

    Taxol#5 coming up, so far so good:)

  • Graceembraced
    Graceembraced Member Posts: 86
    edited September 2012

    Wheavah, I have neuropathy in my toes of both feet now, so i asked about glutamine and my oncologist said he read they proved it was ineffective. Has anyone else heard that? Has glut amine worked for others? Should I take it even if my MO says it does not work...he did not say not to take it...



    I just finished Taxol #9 three more to go...then radiations no finishing Herceptin through August 2013. Just feel like after radiation, treatment every three weeks will give me a sense of a normal life back. Maybe even plan a weekend away!



    On a wonderful note, I was able to hug Beata last night! We saw each other at a church meeting. She shaved her head yesterday and was sporting a cute hat...and a beautiful smile! Oh the strength of women! You all inspire me!



    Enjoy your day!

  • nkb
    nkb Member Posts: 1,561
    edited September 2012

    My MO said the glutamine study (which was double blind and completed in 2/2012 to my knowledge) showed possibly helpful and said I could take it 10 grams 3x per day on the day before, day of and day after taxol infusion. I am 6 weeks post taxol and have mild neuropathy in toes and sensitive nerves elsewhere, fingers are fine now.

    They also did a study of Carntine which showed it made neuropathy worse and he said definitely don't take that.



    Congrats on 9 down!!

  • mom2now
    mom2now Member Posts: 1
    edited September 2012

    So glad you started this topic. I was originally on TC,-Taxotere/Cytoxan, but had severe allergic itchy rash for 3 weeks after only one treatment. Steroids barely helped. No creams, benadryl, allegra or zyrtec could help, so was decided to go to weekly Taxol.  Had my first Taxol treatment and no rash and doing better, with no rash so far.

  • mgdsmc
    mgdsmc Member Posts: 28
    edited October 2012

    Hello Ladies!

    I'm finally done with Taxol! Can't believe it thought this day would never come. I have to say it wasn't too bad. I kept my nails, peach fuzz and energy.

    I finally have my Tuesdays back but not done with appt yet. Have MRI on Tuesday and surgery on the 26th but time off in between to just relax.

    Good luck to all. If I made it so can you! :)

  • MandalaB
    MandalaB Member Posts: 52
    edited October 2012

    YAY mgdsmc!!!!

    so awesome. I'm right behind you- my last one is next tuesday!!!!

     my nails, hair are still kickin- my energy not so much. not as much bone pain though anymore.some numbness in my fingers and burning- but i can still thread a needle ok. woohoo!

     !!!!!

    hang in there!

  • Madelyn
    Madelyn Member Posts: 24
    edited October 2012

    Congratulation mgdsmc....I just finished Taxol #5.

    I'm so happy for you!!!! 

  • whaevah
    whaevah Member Posts: 282
    edited October 2012

    Great for you mgdsmc!!!!

    Madelyn, just finished #5 as well, looks like we are on the same schedule:)

    No nail issues, hair is slowly growing plus new long eyelashes are sprouting. Taxol toes on and off yesterday and fuzzy vision but overall doing well.

    Hope everyone has a great week!

  • mgdsmc
    mgdsmc Member Posts: 28
    edited October 2012

    Thanks Ladies

    I'm at the finish line waiting on you guys to join me! :)

  • vballmom
    vballmom Member Posts: 153
    edited October 2012

    Just finished 12 of 12.  Oh my goodness, I am hurting so badly!  Can't wait for the SEs to settle down and turn this corner.   But...I am done!!!  Yipppeeeee!  Now onto Herceptin and RADS.

  • mgdsmc
    mgdsmc Member Posts: 28
    edited October 2012

    vballmom

    Congratulations you made it! Doesn't it feel wonderful to be done even with the aches and pains?

    I hope you feel better soon :)

  • vballmom
    vballmom Member Posts: 153
    edited October 2012

    Thanks, mgdsmc.   It does feel fabulous...and a bit surreal.  Yes, ladies - there is a light at the end of the tunnel and there are many of us here waiting for you to join us.

  • Driftway
    Driftway Member Posts: 5
    edited October 2012
    Hi all, 
    I finished AC on 9/11 and due for Taxol #3 tomorrow. Also getting Herceptin on Taxol weeks 1, 4, 7, and 10 in the Aphinity study.
    Too bad about the study on Acetyl-l-carnitine, bought two bottles and won't take it.  On to glutamine...
    My main problem is a dry cough, which I think may be the Herceptin.
    Any other TH'ers out there with a cough on Herceptin?
      
  • MandalaB
    MandalaB Member Posts: 52
    edited October 2012

    last taxol tomorrow!!! TOMORROW! 140 days of chemo will be over!!eeee!!!!

  • whaevah
    whaevah Member Posts: 282
    edited October 2012

    vballmon, congradulations ! 

    Taxol #6 done...can almost see the light, hear you all calling Laughing

     MandalaB YOU ARE DONE!!!! yAY

    Roadwarrier, Toastiecat and Graceembraced

    Glutamine10g x 3daily...the day before, day of and day after really works for me so far. I also have 10g once a day if I feel symptoms. Doesn't work for everyone, but maybe will for you Cool

  • mgdsmc
    mgdsmc Member Posts: 28
    edited October 2012

    MandalaB

    Congratulations! You are at the finish line with us! I knew you would make it. Who is next? We are all waiting on you to join us. We did it and so can you :)