TRIPLE POSITIVE GROUP

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  • Blownaway
    Blownaway Member Posts: 760
    edited March 2016

    Trejoli - I'm 2 years out and actually looking forward to my mammogram scheduled for this coming Monday. I'm hoping the bb like things in my right breast are just calcifications and not anything serious. Good luck to you and me also. There is no reason to think that our cancer is not just history.

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  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited March 2016

    I am supposed to start taxol and herceptin late next week I think. Still waiting to get the date. I have heard some talk about premeds. Can anyone tell me what those are? When I asked my Drs. nurse about them she said he doesn't give them. I am going to Emory in Atlanta, so you would think they know what they're doing? And what about vitamins like b6, b12 and E? I'm so scared about neuropathy!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    faith - the usual pre-meds for TCH (Taxotere, not Taxol) for me were Tylenol, Pepcid, Dexamethosone (steroid), and an anti-emetic Aloxi. I also had three anti-nausea meds to take at home if needed. I was given three different ones in case one or more was ineffective. For weekly Taxol the dose is smaller, and it is single agent chemo, so your oncologist may not feel that pre-meds are necessary, but they should be available to you should you find that you need them. Generally, Taxol does not produce much, if any, nausea - but if it does for you, you should receive something for that. Your onc may be trying this first weekly dose to see how things go and then adjust from there. There is a thread here for those doing Taxol and Herceptin - those members may have more info regarding whether they received pre-meds or not - have you looked at that thread? As far as neuropathy - I did take B6 and L-glutamine to ward off neuropathy, with the blessing of my onc. I did have neuropathy that resolved prior to the next infusion until half way through my six infusions, then it stayed, but did resolve by about 90-120 days post chemo.

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  • PatinMN
    PatinMN Member Posts: 920
    edited March 2016

    Faith - I had weekly taxol and herceptin. I did have pre-meds of Pepcid, a steroid and an anti-nausea drug. I never had any nausea at home and never took the two different anti-nausea meds they prescribed. After the 3rd or 4th infusion I started getting the tingling of neuropathy, and started taking B6 (100 mg per day) and l-glutamine (total of 30 grams per day, 15 grams of powder twice per day mixed in a liquid). I think it helped. Some people never have any neuropathy at all on weekly taxol. My chemo nurse suggested waiting to start the B6 and l-glutamine until I started having symptoms, so that's what I did.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited March 2016

    Faith, I did weekly Taxol with Herceptin/Perjeta (every three weeks). I took a steroid the night before and right before my infusion. They didn't give me anything else that I can remember. The neuropathy started about eight weeks in but was very mild (fingers/toes). It was completely gone a couple months after I finished. I never took any supplements.

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  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited March 2016

    SpecialK, Thanks so much for your reply.. I haven't looked at that thread yet but it will be my next one to check out. And I'm so glad your neuropathy went away! I was between going to Moffitt cancer center and Emory but chose Emory because my nieces live there and I can stay with them. But I would have loved to have gone to Moffitt. I didn't see anywhere to put it but i'm BRCA2+ as well. How long did you take the B6 and L-glutamine?

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  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    Weighing in on B6: my MO recommended it when I started TCHP (although taxotere [the drug I got] and taxol are different, they're both in the taxane family and can have similar SEs, including neuropathy). I took 100mg a day, in a time-release formula, all throughout chemo. Now I take 50mg a day, simply because I noticed some tingly toes when I stopped it completely.

    My MO, who is on the conservative side when it comes to supplements, wouldn't let me take glutamine. I've since put my foot down about a few things (including turkey tail mushroom), and she seems to be coming around. Or she's just indulging me. Either way; I take what I want, but always make sure it doesn't interact badly with tamoxifen, which is an entirely different topic. :)

    At any rate, TH is well-tolerated by most.

    Have any of you heard/read that carboplatin is or will be removed from ASCO's guidelines for triple-pos?

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  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited March 2016

    PatinMN and mommato3-

    Thank you for the info. It is encouraging to hear because I have been so worried about the neuropathy. At least now I feel I have some guidance :) So glad both of you don't have any lingering neuropathy!

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  • DurhamGirl
    DurhamGirl Member Posts: 100
    edited March 2016

    Kate,

    My MO attended the ASCO conference last fall where they discussed the effect of carboplatin for triple+ BC. I had just developed some problems (minorhearing loss & tinnitus) as a result of carbo, so she was pretty quick to recommend stopping the carbo given the latest research. The rest of my chemo went much more smoothly after that. I didn't do too much research on my own about it, but I do think the latest research shows there is not too much benefit to using carboplatin (a very old drug with lots of potential negative SEs) with triple+ disease.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    faith - I took both the L-glutamine (30g of powder daily in three 10g servings dissolved in a cold non-acidic drink), and the B6 (same as kate) throughout chemo. I continued the L-glutamine until the container was empty, probably a month or so post-chemo, and I still take B6 but do it as part of a B-Complex supplement.

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  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    I think the idea of a spa treatment after a mammogram is an excellent idea!

    And I wish we knew about the carbo before we did TCHP! That one was awful for me!

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  • Nolagirl1126
    Nolagirl1126 Member Posts: 196
    edited April 2016

    Tresjoli2- spa pedicure can cure all ailments in my book. Enjoy!

    Blown away- thinking of you and your mammogram on the 4th...you got this!

    Faith- I would be tempted to put in a call and talk to your Dr. About the premeds. I haven't heard of anyone not getting on the Taxol/Gerceptin regimine. I have all the same above in a 20 min. Drip prior to infusion and the steroid, I take by mouth...same time as the drip.

    kateb79 and Duhramgirl- thank you for bringing up that topic. I hadn't heard of the removal of carbo in +++ BC. That's interesting. Off to google!
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  • KateB79
    KateB79 Member Posts: 747
    edited April 2016

    Musosgirl, yeah . . . carbo kicked my ass. I mean, taxotere was no peach, but I credit the carbo for most of my SEs. So does my MO. But I, in her words, "tolerated it well," so I got all six bags at full dose. She was proud of me, I think. One can never really tell; she's one of those stoic types. At least she has a sense of humor!

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  • Blownaway
    Blownaway Member Posts: 760
    edited April 2016

    Faith - I was given several different meds during my TCH infusion the first time deca..., dexa..., aloxi and something else - I looked back through my old posts trying to find the names of all of them but couldn't find the post I was looking for. Sorry someone may hopefully jump in and give the full names.... Anyway, I was still so nauseated for 3 days that I didnt think I continue treatment. I think it was Special K who mentioned to me to see if I was getting "Emend" in my infusion. I asked about it the next time, it was added and I was never nauseated after that. Apparently, it is so expensive it is not automatically given. I can get seasick in the bathtub - could not have gone through further treatment without the Emend.

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  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited April 2016

    Thanks Kate, Nolagirl, Blownaway, SpecialK for all the help and advice. It makes me feel better to have input from those of you who have been there. Like I don't feel so alone anymore.So thanks for that too! I'm curious about Kates' wild turkey tail mushroom LOL. I have got to look that one up!

    Blownaway- will also be thinking about you on the 4th. Go out and have some fun this weekend! :)

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  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited April 2016

    SpecialK said there was a thread here for people doing taxol and herceptin. I can't figure out how to find it. I see where you look for different forums but how do you find specific threads? Thanks!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    faith - I just type in keywords in the search box but you have to have an idea of what they would be. Here is a link to the Taxol thread:

    https://community.breastcancer.org/forum/69/topics/788735?page=198#post_4681995


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  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited April 2016

    Thank you SpecialK! :)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    No problem - it is a bit hard to navigate and find things unless you have seen them already, right? Happy to help!

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  • Nolagirl1126
    Nolagirl1126 Member Posts: 196
    edited April 2016

    Faith-Ga- I'm on that thread too! Good info. It's the Taxol weekly thread. Not all ladies are Her2+, but there's a lot that are.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    I did weekly taxol with herceptin, and I didn't take anything the night before, but was given decadron, aloxi and one other thing. Never really had much nausea. Some just icky queasiness.

    I also took l acetyl l-glutamine, b6.

    I had a little tingling in my fingertips, but my biggest thing was my hands and feet were constantly freezing cold. So much so that my husband would put two heating pads at the foot of the bed and a hot water bottle for my hands. It took a long time for that to go away

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  • colleen1013
    colleen1013 Member Posts: 50
    edited April 2016

    Hi, Faith:


    I did weekly taxol and herceptin , the thread is

    https://community.breastcancer.org/forum/80/topics...


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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2016

    i just got the all clear! Mammo looks good. Woohoo!!!!!!!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    tres - yay!

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  • fightergirl711
    fightergirl711 Member Posts: 300
    edited April 2016

    Great news Tres!

    Faith - here is also great article on weekly Taxol+Herceptin for early stage BC. http://www.breastcancer.org/research-news/20140207-4

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  • ang7894
    ang7894 Member Posts: 540
    edited April 2016

    Yay !! tres

    Smile

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  • Blownaway
    Blownaway Member Posts: 760
    edited April 2016

    Happy to say that my bb lump turned out to be scar tissue from an old breast reduction surgery. I do intend to ask my onco tomorrow since HER2 can come back anywhere in our body, why do they only check breasts?

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  • cjpecori
    cjpecori Member Posts: 2
    edited April 2016

    dx 2/16 w/ 2.9cm idc triple positive left breast and a phylloides tumor (which is benign at this time)

    unsure of nodes b/c neoadjevunct chemo but mri looked ok

    completed 2nd round of neoadjevunct tchp last friday

    2nd tx was worse, my onc told me about the cummulative effect

    ? regarding my genetics that came back + for PALB2 & BRIP1 limited info on these but onc says possible BMX

    also i found some info on high risk of ovarian ca with BRIP1 just what i need

    any one have better data, info, history, suggestions?

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited April 2016

    I haven't been on here for a while - nice to catch up with the old timers and sorry that the newbies have to be here. I just passed my 6 year anniversary (March 19th) from diagnosis with stage 3A, triple positive IDC. Hang in there, and someday you will be 6 years out.

    God Bless you,

    Linda

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited April 2016

    Congratulations, Linda! Nice to see your 'face'

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