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Weekly Taxol group

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Comments

  • ninjamary
    ninjamary Member Posts: 67
    edited August 2015

    Molly - that sounds like a good answer. I guess I should not complain about only having to wait two weeks. My port bothers me now. Just like the tumor bothered me before it was removed.

  • leighrh
    leighrh Member Posts: 102
    edited August 2015

    Allison, my mouth is yuk too... tongue is gross too... white, I just scrub it until I gag myself when I brush my teeth.

    Don't really have too many thoughts on my port except when it's sore or bothering me..... which of course this week it's not. I am just ready to feel good on the weekend again..... my tx is on Thursday so I start to feel bad on Sat night and Sun is useless. And of course I WANT HAIR!!! LOL Still no change on that front, no hair anywhere so I guess im just one of the lucky ones who gets no growth on Taxol......5 more, 5 more, 5 more..... LOL!

  • karabesque
    karabesque Member Posts: 37
    edited August 2015

    Wow Kbee! Congrats!!! That is so exciting. And I am sure none of us are counting either (October 9 for me if all goes well)

  • princesstina
    princesstina Member Posts: 129
    edited August 2015

    HAHAHAAHA i am so counting every single minute.

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Leigh: Have you looked up close to see if you have those blackhead things? You need a magnifying mirror.

    Advice: Don't google white growth on tongue. People's mouths are nasty! Yuck. Still can'f figure out what this thing is.

  • KBeee
    KBeee Member Posts: 695
    edited August 2015

    Allison, Do you see MO tomorrow? If not, make sure you show the nurses if you haven't called yet, so that they can call MO and see if he/she' will call something in.

    I don't see MO again until October. He asked if I wanted to see him in 2 or 6 months. Um.......2 months!

  • trvler
    trvler Member Posts: 931
    edited August 2015

    I will tell them. I am going to run over to the dentist this afternoon, too. I hate this. Now everything creeps me out. I have to believe it's some kind of SE.

  • MJS1266
    MJS1266 Member Posts: 159
    edited August 2015

    Ladies, It definitely sounds like a few of you have thrush. when I first got it, I didn't know and also tried to scrub tongue which doesn't work. Anyone with white yucky stuff on their tongue most likely has thrush. Tell MO or nurses and they will prescribe a liquid or pill. The liquid has some numbing ingredient can't remember name but if you are having trouble swallowing etc it will help. It is a pretty common SE. I got it almost immediately after I started A/C. Good Luck, MJ

  • trvler
    trvler Member Posts: 931
    edited August 2015

    I actually don't think it is thrush. My tongue looks pretty healthy compared to these yucky thrush and tongue pictures I am seeing. But that white thing on the tip is freaking me out. I have seen tongue pimples and a host of other tongue things in the pictures but nothing that resembles it.

  • trvler
    trvler Member Posts: 931
    edited August 2015

    What # are you on, Leigh? I think 7? I am telling you. 9. That's when mine really started. I have about anywhere from 1/2' to an inch I would say. It's different on the sides and back than the top. At certain angles, I still look like I have a bald spot but I don't think I do anymore. It's fuzz there.

  • leighrh
    leighrh Member Posts: 102
    edited August 2015

    WOOHOOO Allison... #11! Almost there! One more week!!!! This week is #8 for me. Im not even looking at my head anymore... LOL There is something there that I can barely see with a magnifying mirror but it's just a light dusting of fuzz and def not everywhere. My sides are smooth as a babies but! LOL

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Leigh, exactly where I was at your point.

  • ninjamary
    ninjamary Member Posts: 67
    edited August 2015

    Let me tell you...once #12 is over it's like the biggest relief. For the first time in a long time I do not have a MD appointment scheduled for two weeks. I know the SE will pass completely too. Looking forward to food tasting better, drinking an ice cold beer and sleeping through the night. I actually slept until 2:30 am, went downstairs to lay my hot head on a leather couch (cooling effect) fell asleep at 3:30 and didn't wake up until 6:15. It was awesome!

  • leighrh
    leighrh Member Posts: 102
    edited August 2015

    So excited for you Mary!!! WOOHOOO!!!! It's OVER!!!!!!

    I can't WAIT for my # 12! I have radiation after that but I just feel like that will be no big thang.... at least it won't seem like after this crap! Im ready for my mouth to quit tasting like shit, I am ready for my stamina back, Im ready..... Pick me.... LOL!!!

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Mary, when was your last Taxol?

    Just finished #11. Woohoo.

  • suladog
    suladog Member Posts: 837
    edited August 2015

    Trvlr,

    you're in the home stretch! Almost done!!

    Mary,

    congrats on being done!!!

    I finished taxol mid April but I've got herceptin till the end of Dec, It took about a month for the taste buds to come back but they're here now!

  • kerryd423
    kerryd423 Member Posts: 53
    edited August 2015

    Has anyone here had to stop Taxol early, prior to completing the 12 doses, due to adverse affects? I developed a terrible rash as well as neuropathy in my legs- not just numbness and tingling, but weakness and a clumsy gait. After the 8th Taxol, they held it for 2 weeks. The rash subsided and the neuropathy lessened. I received the 9th dose and after 5 days the neuropathy returned more significantly. They held my Taxol again last week and my MO said they will likely stop but will make a final decision this week. I am worried about only receiving 9, but also fearful of worsening or permanent neuropathy.

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Kerry: ARe you taking glutamine? I might be crazy but I really believe it works. I only take one dose a day. 3 is the recommended level. One time I didn't take it for a few days and I noticed more tingling. It could have been a coincidence.

  • KBeee
    KBeee Member Posts: 695
    edited August 2015

    Kerry, At 9 doses, you have received more than people on the dose dense regimen who do 4 larger doses, so you probably have gotten enough.

    Allison, ONE left!!! 7 days and we will have chemo in the rear view mirror!!!!!!😀🎉

  • trvler
    trvler Member Posts: 931
    edited August 2015

    I hate to ask this but I have to. If for some reason, the cancer is back and I have to do chemo again, if it is the same characteristics, do you get the same regiment?

  • kerryd423
    kerryd423 Member Posts: 53
    edited August 2015

    Thank you Allison. I will ask about the glutamine- she only told me to start B6 which I don't think is helping though it might be worse without it.

    Karen- I didn't realize that the dose dense was less overall than 12 weekly? Are the larger doses equivalent to 2 weekly? I assumed it was 3. That is interesting.

    Thanks!

  • kerryd423
    kerryd423 Member Posts: 53
    edited August 2015

    Allison- I have the same question! I will ask my MO on Thursday and report back!

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Just make sure you get it at a place like Whole Foods. I don't trust most places. Supplements aren't regulated by the FDA and there was a story not long ago about how they tested supplements from GNC and found them to not have in them what they said they had in them. Don't try to find it someplace cheap and definitely don't buy online. Too risky.

  • dltnhm
    dltnhm Member Posts: 420
    edited August 2015

    FYI

    http://www.ascopost.com/ViewNews.aspx?nid=4213

    Snippet from the study - the entire ASCO post linked is an easy, short read

    "Low-dose weekly administration of paclitaxel resulted in equal progression-free survival but reduced overall toxicity compared to every-2-week dose-dense administration for women with higher-risk early-stage breast cancer who have undergone surgery, according to a phase III randomized trial."

    Been there - done that - pulling for you all!

    Diana

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited August 2015

    I have had to stop taxol due to n acute hypersensitivity reaction, I switch to Abraxane this week. I am so swollen from all the steroids I had shoved in me on friday. I actually called my doctor about it to see if there was something that could be done about the swelling. She called back 8 hours later (grr) and said taxol can cause swelling...she'd see me on friday. Ummm...I can't even put my watch on and had to take my rings off and I only got 15 minutes of taxol.

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Oh, Tres. That sucks! I know it's so frustrating when the doctor doesn't take you as seriously as you are feeling. So you get the Abraxane Friday? Do they give you steroids for that, too, or did they say?

  • KBeee
    KBeee Member Posts: 695
    edited August 2015

    Tresjoli, I hope the swelling resolves.

    Kerry, if you add up the total given for dose dense bs the 12 weekly, it is between the 8th and 9th dose. You can do a google search to find the dosages and then add them up. I am on my phone, not my computer, or I would search.

    Allison, if you have a recurrence, they give you a new regimen. I did Taxotere and Cytoxan last time. This time AC then Taxol. Honestly I worry that this regimen is too similar. I wish I would have asked more about it earlier. I will not do Tamoxifen this time though; I will do Femera

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited August 2015

    they haven't said trvler...

  • pennsygal
    pennsygal Member Posts: 264
    edited August 2015

    Tresjoli - I don't get any steroids with Abraxane. Just two anti- nausea pills before the infusion

  • Selmada
    Selmada Member Posts: 6
    edited August 2015


    Bald doesnt seem to bother me. I need to cover to avoid the sun though so when outside during the day I have a hat or a parasol. This picture was from a pride celebration with my twin boys (6) They are such little hams.

    Happily I passed my bloodwork today and finished week 9/12 of the weekly. Oncology on Friday. Meet and setup with radiation is tomorrow although I start AC after Taxol for 3 months so it will be a long time before radiation.

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