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Weekly Taxol group

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  • Magnolia83
    Magnolia83 Member Posts: 20
    edited July 2015

    I haven't had a hard time sleeping but even if I feel a teensy bit restless I am quick to pop an Ativan and that usually does the trick for me :)

    My mom has a friend who just finished treatment for breast cancer and has terrible insomnia...her doctor just told her to take Benadryl but I guess it hasn't been working for her and he refuses to give her anything else. I don't know why some docs are so hesitant to work with cancer patients on their sleep? It seems like such a major part of health and wellbeing, and we already have so many other hurdles to jump over in that arena!

  • trvler
    trvler Member Posts: 931
    edited July 2015

    I agree, Magnolia. I have not patience for people who give cancer patients a hard time. I am sorry your mom is having trouble sleeping.

  • ninjamary
    ninjamary Member Posts: 67
    edited July 2015

    Magnolia - my primary wouldn't give me ambien because "it's addicting" Are you f'n kidding me. You are worried about me becoming addicted to ambien when I'm going through chemo. Really? That's what you are worried about? I asked my MO nurse and she gave me the lowest dose of xanax possible. I have to take three of them for it to even help me sleep. I'm almost out of them and god forbid I ask for more because then I'm an addict. Mind you, my breast surgeon gave me vicodin for the pain of lumpectomy and port install. I have taken a total of 3 pills and have two bottles left. I'm a very bad addict.

  • trvler
    trvler Member Posts: 931
    edited July 2015

    Haha. Mary. I am the same. If I get a bottle of vicodin, I keep as much as I can for times I want it but can't get it. If I feel crappy, I take a half of it. I couldn't take it Sunday because they gave me tylenol in the ER and I knew that it has tylenol in it. Don't worry, Katy. I haven't taken any Vicodin in probably a year.

    They have a new law about prescribing it. They can't call it in and there are some other rules which I can't recall.

  • Carrie37
    Carrie37 Member Posts: 35
    edited July 2015

    I did not do any icing while on Taxol. My doctor didn't think it would help. I did start to get some neuropathy and had to skip a dose. It really did help to take that week off.

    I have had sleep issues too. I wake up a lot. My doctor does give me Ambien but I don't always take it. I have to take a handwritten prescription to the pharmacy. They won't accept a call in for the narcotics anymore.

  • princesstina
    princesstina Member Posts: 129
    edited July 2015

    So moving along with the cryotherapy affect on neuropathy study my MO is conducting - I have no neuropathy and clear nails at taxol #5 - my researcher who does the glove/shoe fittings and times my icing (and runs the patient care) says all the other women (37 so far) in the study are at 100% success in preventing neuropathy.

  • trvler
    trvler Member Posts: 931
    edited July 2015

    Interesting, Princess. Is it really uncomfortable? I assume you do it weekly.

  • princesstina
    princesstina Member Posts: 129
    edited July 2015

    It is only uncomfortable the first five minutes - it is totally do-able and tolerable even if the odds were worse of it working I would do it - but the researcher is adamant they are seeing such good results. I do it weekly - 15 mins before taxol/during/15 mins after - she changes the gloves/footies out at 45 minutes w/a new cold fresh set.

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited July 2015

    I'm actually sleepy..all the time sleepy. Anyone else sleeping a lot

  • karabesque
    karabesque Member Posts: 37
    edited July 2015

    Ambien definitely helps me sleep through the flashes. I also get weekly accupuncture to prevent neuropathy and help with aches and pains and she gave me herbs for the hot flashes. I am not going to ice either ( I have only had one treatment). My MO says the accupuncture and supplements help more than icing. We will see...

  • ninjamary
    ninjamary Member Posts: 67
    edited July 2015

    Carrie - I have neuropathy which is getting worse and worse. It started after #9. I told the infusion room nurse about it at #10 and my MO nurse this past Monday. Well the latter could have cared less. The side effects have moved from my toes to the balls of my feet. Actually I can't feel one of my toes. You would think they would have stopped or lightened my dose. Nope. I have another nurse trying to get my dose lowered. At this late stage I don't want to postpone a dose. I'm finished on July 30th. That's it. Chemo is done on that date. I'm not going into August. I'm putting my numb (and swollen) foot down on that point.

  • rleepac
    rleepac Member Posts: 193
    edited July 2015

    I got lucky with neuropathy. Only a little tingling in my fingertips and my big toes. Although nearly one week now after my final Taxol, I am getting some tingling in the balls of my feet. I'm sure it's just residual and it will fade instead of getting worse. My nails are a little yellow about half-way down and then the new growth (since AC it looks like judging by the horizontal 'trauma' line on my nail) is all good. I'm using OPI Nail Envy and it's really good stuff for nail repair.

    I did not ice at all but I did keep my nails polished with dark/opaque polish the full 12 weeks and only had it off long enough to put on a fresh coat about once a week. It was a pain in the ass because I'm not usually a nail polish kind of gal...but I think it helped.

    Bekah

  • tonia52
    tonia52 Member Posts: 19
    edited July 2015

    hey my wonderful survivors! First off I love and pray for you all and ask God to feel you with precious joy and peace daily!

    Question to any of you on taxol. My hair started growing back after my third treatment on taxol herceptin.I had completed four ADR treatments prior. I was wondering if anyone else is experiencing hair growth on the taxol herceptin treatments.

  • rleepac
    rleepac Member Posts: 193
    edited July 2015

    Yes, my hair started growing back about 2-3 weeks after my AC was finished and has been steadily growing on Taxol/Herceptin/Perjeta.

  • trvler
    trvler Member Posts: 931
    edited July 2015

    Does the nail polish actually help with something of is it just not to show the way the nails look? My nails seem to be looking better about 1/3 to 1/2 way from the top. I guess the AC was what made them all white.

    Just had my nosebleed du jour.

  • rleepac
    rleepac Member Posts: 193
    edited July 2015

    Supposedly it's supposed to block out UV light which supposedly reacts with Taxol in a bad way. I don't know where I read it but I can't ice die to Raynauds so dark/opaque polish was my second choice.

  • Angiel
    Angiel Member Posts: 175
    edited July 2015

    Rleepac, I read the same thing....and I have Rayneaud's as well, so icing was out for me too. Short & dark worked just fine...


  • anewbeginning
    anewbeginning Member Posts: 97
    edited July 2015

    Angiel

    How often and how much LGlutamine did you take?

  • Angiel
    Angiel Member Posts: 175
    edited July 2015

    I took 1,000 mg caplets twice a day. I think the powder form is preferable but I didn't know that when I started. The caplet form seemed to work fine for me so I never switched.

  • leighrh
    leighrh Member Posts: 102
    edited July 2015

    Taxol #6 for me today! Half way there...... but it seems like so much more :(

  • Carrie37
    Carrie37 Member Posts: 35
    edited July 2015

    Mary-sorry you are having neuropathy too. I mentioned it to my MO every week and she wasn't too concerned. As soon as it moved to my legs they held the Taxol. Said it could become permanent and we don't want that in my legs. I guess in my feet is okay? (Rolls eyes). Anyway, I didn't have to postpone any--I just skipped so instead of 12 I had 11 infusions of Taxol. One week PFC!!! Woot! My hair started growing back around week 10.

  • trvler
    trvler Member Posts: 931
    edited July 2015

    Any idea when the nosebleeds stop?

  • pboi
    pboi Member Posts: 148
    edited July 2015

    Allison... I had nosebleeds all the time too on Taxol. They stopped about 2 weeks after the last Taxol. Hang in there!

    PB

  • rleepac
    rleepac Member Posts: 193
    edited July 2015

    I never had nosebleeds. Just some bloody discharge intermittently. Sorry...I'm no help on that one!

  • karabesque
    karabesque Member Posts: 37
    edited July 2015

    Hi Ladies- I was wondering if anyone would mind sharing what their pain med protocol is. I am on instant release oxycodone and take about 20mgs a day. I don't feel like it;s the most effective and I hate knowing that I am probably addicted at this point. I do have a good amount of pain and need something. When I discussed it with my MO, she basically said this was my only option. I can't take any ibuprofen or acetemenophin due to my liver. Any help is appreciated. TIA.

  • ninjamary
    ninjamary Member Posts: 67
    edited July 2015

    Carrie - mine is still in my feet and just to the balls of my feet. They refused to lower my dose as I only have two chemo's left. I was under the assumption that the last 2 were just icing on the cake. I guess I'll just suffer through it.

    I had Taxol #11 yesterday and it was the worst of the bunch. I slept maybe 3 hours last night because of steroid high and head sweats.

    Kara - I haven't needed pain pills with chemo. I'm not good with oxy or vicodin. I prefer daily bowel movements and those things mess up my insides.

  • trvler
    trvler Member Posts: 931
    edited July 2015

    Kara: You might be better posting that question in the surgery forum.

  • Carrie37
    Carrie37 Member Posts: 35
    edited July 2015

    You're so close Mary!! Congrats! Allison, my daily bloody noses seemed to stop around week 10. but I did and still have dryness which sometimes leads to the bloody nose. And it seems that I have one side that always has bloody discharge. I am one week PFC.

  • karabesque
    karabesque Member Posts: 37
    edited July 2015

    Okay. I had my surgery 5 months ago. I still take daily because I have bad body aches and pain form TEs. But I will pose the question elsewhere, as well.

    Taxol #2 today.

  • trvler
    trvler Member Posts: 931
    edited July 2015

    Good luck with the pain question, Kara. Welcome to the Taxol group. How are you doing on it so far? Did you have A/C?

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