paclitaxel start 3 wks on 1 off

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sharethehope
sharethehope Member Posts: 115
edited January 2017 in Stage IV/Metastatic Breast Cancer ONLY

starting tax this wed. couldn't start last wk because platelets too low. Getting very nervous since past treatments have either failed or not lasted long. would like to get retested by Caris for liver spots but don't know if it can be reached for biop. so far many of the treatments they say will work haven't. just think something has changed. I was off my mushroom extracts because of lack of funds. I do think mushroom helps. kind of in a stall.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited November 2016

    Try this thread for some helpful information:

    https://community.breastcancer.org/forum/8/topics/790290?page=1

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  • sharethehope
    sharethehope Member Posts: 115
    edited November 2016

    Jennifer thanks for the thread. You seem to have good responses to your treatments. A yr or more on each is very good. Hope Taxol works for more than a few mo for me.

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited November 2016

    over 3 years on weekly taxol for me. This last year I've been on a trial for the oral form Oraxol. Much easier to tolerate. No need for premeds like Dex and fewer hospital visits. Can highly recommend if it's an option for you.

    Good luck I hope you get a good run on it.

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  • sharethehope
    sharethehope Member Posts: 115
    edited November 2016

    congrats Kelly on the long time on Taxol/Oraxol. hope it continues. did you have any problems with the steroids on taxol  have read so many did. I've had steroids with other chemo but not had the wakefulness. don't know what to expect.  have a lot to talk to onc about but sometimes feel "written off" because I'm already 75. some give off vibes that I've had my time. actually some have been quite pointed in that view from the start. sometimes I feel I'm fighting this alone. No family left. April

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited November 2016

    April,

    Give them heck if you feel "written off" due to your age. That is simply not on.

    Jennifer

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited December 2016

    Share the hope I hated the steroids but was able to get my Onc to drop them off over time. I didn't sleep for months, was so glad when I could stop the

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  • sharethehope
    sharethehope Member Posts: 115
    edited December 2016

    thanks for the info about steroids. Its been such a long time that I have complained about the 3rd day feeling so poorly but no one ever mentioned the steroids till I got on this site. Early this a.m. I also woke up with a headache & feelin nauseous . Not bad, certainly had worst. Just charting the lay of the land with this taxol.  Wish they're were something to do for feeling tired. thanks again   

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  • sharethehope
    sharethehope Member Posts: 115
    edited December 2016

    hi Shaz what phase is the Oraxol trial you're in? thanks April

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited December 2016

    hi April. It's a Phase 2 trial.

    How are you finding the Taxol

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  • sharethehope
    sharethehope Member Posts: 115
    edited December 2016

    Shazza Taxol is going fine.- had 3rd treatment yesterday & expected to find my hair on my pillow this morning. but not yet. Saw onc yesterday & thanks to you had him reduce the steroids. Slept better last night & hoping the steroid drop isn't as bad either. He was unaware of the oral taxol product so trying to get more info on it. I guess US onc don't look at overseas trials! There were phase 3 trials started in several SA countries a few months ago. Hoping I can stay on taxol tike you & then the oral taxol will be available. Next week is my week off thank goodness. I drive 1 hr 15 min minimum each way for treatment. Having a blood transfusion Sat. so should feel a lot better. Talked onc into not waiting for levels to tank before starting blood. Live alone & if I cant get to the kitchen I don't eat.  Going to ask about B12 shots also. You've been a great help cant thank you enough. April

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  • sharethehope
    sharethehope Member Posts: 115
    edited January 2017

    will have 4th treatment taxol tomorrow.  Had a lot of acid reflex. Mostly worried about being so tired my whole week off chemo. Worried taxol isn't working.   had blood trans on the 17th also.  should have felt better. Has anyone else been real tired on the week off from chemo?  Also had rip off my sweater hot flashes.  hair dropping faster than the leaves off the trees. what can they use if taxol doesn't work?

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  • sharethehope
    sharethehope Member Posts: 115
    edited January 2017

    know of any other long term Taxol patients. 3 yrs or more. most seem to have a designated period.

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  • babs6287
    babs6287 Member Posts: 2,021
    edited December 2016

    I am on Taxol indefinitely until it stops working. Just finished my first cycle of 3 weeks on 1 off. Do t know yet if it is working or not!!!! Fingers crossed!!!!

    Babs

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  • sharethehope
    sharethehope Member Posts: 115
    edited January 2017

    that's where I'm at to Babs. had 4th treatment. last one had lots of acid reflux. If you read Shazza's post she's now on the oral trial taxol. hoping to be on this till the oral is released in fall of 2017.  Thanks for replying.  April

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  • babs6287
    babs6287 Member Posts: 2,021
    edited December 2016

    April

    At my last infusion I think the steroids made me a bit nuts. I have to have them lower the dosage the next time!

    Babs

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited December 2016

    definitely see about getting the premeds adjusted there are plenty of places that don't use steroids at all after the first few doses although I was only able to get my Onc to drop mine to 2mg but it made all the difference.

    I also got them to change the antihistamines as they made me too sleepy and I had to go to work after chemo. I still say the premeds caused me more problems than the taxol and I think that's been proved as I feel much better on the oral version.

    In New Zealand we don't get a break between cycles just keep going each week but this is the 3rd year I have taken a 2 cycle break over Xmas and all of January and I'm loving no treatment.

    Take care

    Shazz

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  • babs6287
    babs6287 Member Posts: 2,021
    edited December 2016

    Thanks Shazz!

    Babs

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  • sharethehope
    sharethehope Member Posts: 115
    edited February 2017

    Well ladies I had my scan & not so good. Some progression in some liver tumors. Maybe Zeloda if no clinical trials. Have to wait week & 1/2 to see. Getting a second opinion but things just don't look good.  Best wishes to all of you. April

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  • Wiegp22
    Wiegp22 Member Posts: 268
    edited January 2017

    April, you are not alone, I am 64 and also feel neglected by my pa who I get to see instead of on who I only see once in awhile, when I ask to add vit d and others, pa said might interfere with chemo, no straight answer

    Paula

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  • sharethehope
    sharethehope Member Posts: 115
    edited January 2017

    Paula

    Could you find an integrative onc? You don't need your onc permission to see one & they would only suggest vit that would be harmonious with your chemo. Some would interfere with certain chemo but its their job to know that. I'm on a lot of vit all recommended by integ. onc. E, super B-complex, D3 (very important for cancer & inter onc can test you, CoQ10, Culturelle for gut health plus some mushroom extracts. If you like mushrooms buy mushroom tea & also eat a lot of mushrooms. Several are excellent for immune health & some have been tested as a befit for cancer. I ask my reg onc about a plant based vit & he said " I don't know about plants". This was when he had me on Taxol. Now I realize that they no longer use the yew tree but manufacture taxol now, but, WHAT?  They're researching plant based drugs all the time. My reg onc knows I'm on all these vit but after my last scan he said I might have a blood clot in a vein in my liver & I should go on a blood thinner.  He already has me on a blood thinner!  So encourage he reads my records. Hah April 

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