TRIPLE POSITIVE GROUP

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  • Sammy3
    Sammy3 Member Posts: 136
    edited December 2015

    I just thought of a couple questions today. What do you guys wear to chemo day? Sweats? Do I need a special kind of shirt to access the port? Do you wear contacts or is that a no-no?

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  • twiggyOR
    twiggyOR Member Posts: 270
    edited December 2015

    wear anything comfortable. You will be there for hours. I wear a v neck t shirt for the port access. I actually am wearing the same shirt to every chemo and I'm going to burn it when I'm done. 😀

    If you are getting the neulasta on body injector, it can go on your tummy or the back of your arm. Wear loose pants or sweats if you want it on your tummy.

    I don't have any input on contacts. However,, I will say that my eyes have been irritated during this whole chemo process.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    I usually wore a tank style or scoop neck t-shirt under a zip up track jacket or sweatshirt.  I iced my toes and fingers during Taxotere so I wanted to have layers for warmth.  I have a subclavian port so it is up pretty high.  I usually wore yoga pants or track pants.

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  • runningcello
    runningcello Member Posts: 110
    edited December 2015

    thank you all :)


    I wore a zip up and comfy pants for every treatment. It was a good 8 hour process each time I went and majority of the time was spent "waiting"! Have a good book or a nice group of folks with you, if possible. My husband came to each treatment and some relatives would come and we'd play cards. It made the time fly & created some wonderful memories!! Good luck with treatment, folks :)

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  • keepsake
    keepsake Member Posts: 59
    edited March 2016

    lago and bjsmiller, thanks for your responses! If I remember correctly, my MO did address the possibility (?probability) of hormonal treatment being the more effective agent for me in preventing recurrence, the SEs of different regimens, and how and why pharmaceutical companies differ in promoting their drugs for use with different populations so that they are, or are not, tested extensively in randomized trials (unfortunately, the details of which I cannot trust my memory to recall accurately now). Consideration of these factors also likely influenced her regimen choice for me, personally. Obviously, she has taken my personal medical history in account along with other factors to recommend a specific regimen for me, and may have concluded that I may not do as well as other patients on the standard regimen, or perhaps, would not likely be able to complete the standard regimen's course. Your input about how Obamacare's influence on insurance companies' payment policies regarding different regimens possibly being a factor in regimen choice is interesting.

    With the help of you all, I able to process this experience better and clarify my thinking. I am very grateful for all your input and that these forums exist. I see the need to ask more questions at my next visit and to bring a notebook to help me remember both the scope and details of the discussion so that I feel comfortable moving forward.

    Thanks!

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  • dawntastic
    dawntastic Member Posts: 17
    edited December 2015

    Does anyone know the difference between Taxotere and Taxol? I was switched from Taxotere to Taxol because of an allergic reaction. I have to have the Taxol every week for 9 cycles. I asked my MO if it was just as effective, and she said yes. Just wondering if anyone had any experience with switching from these two drugs and should I be concerned with it being just as effective. My MO said it was in the same family of drugs.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    dawntastic - Taxol is the older drug, and Taxotere was the product of looking at ways of making Taxol more effective - both are taxane drugs with the same type of mechanism.  While Taxotere is more potent - thus the dosing differences, Taxol is very similar in treatment efficacy.  It is more common than you might think to have to make drug switches, don't let that worry you.

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  • dawntastic
    dawntastic Member Posts: 17
    edited December 2015

    SpecialK - Thank you for the quick response. That does make me feel better.

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  • Sammy3
    Sammy3 Member Posts: 136
    edited December 2015

    All of you who are responding to us first-timers are so amazing and appreciated!!!! Thank you!
    Thinking to the future, when you are done with your 6 rounds of chemo & go to the every 3 week herceptin - are you getting both herceptin and perjeta at that time, or just herceptin?


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    dawntastic - another positive about Taxol is the weekly dosing is easier on the system, and because it is an older drug it has a proven track record.  Watch for any signs of peripheral neuropathy (tingling and numbness) which is common, but report it to your MO if it happens.

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  • Musosgirl
    Musosgirl Member Posts: 387
    edited December 2015
    I had to switch from Taxotere to Taxol, and then later to Abraxane. My biggest compliant was that instead of two bad weeks and one good week, all three weeks were tough. BUT the side effects were not as bad--except for the neuropathy which just never gave up and I ended not doing the last 4 weeks of Abraxane.

    My first Herceptin-only infusion included Perjeta because it was pre-surgery. Post surgery (this week) it is Herceptin only. I believe that is an FDA issue. My MO has said he wishes he could give Perjeta weekly and for the whole year, like Herceptin, but it is not approved that way yet.
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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2015

    Keepsake, I'd get a second opinion. Sounds like you are really not comfortable with the navelbean, as yet. A second opinion might make you comfortable w/ the first onc's opinion or possibly not. very likely second onc could give you much more info which would allow you a much more informed decision.

    Good luck!

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  • dawntastic
    dawntastic Member Posts: 17
    edited December 2015

    SpecialK - Thank you. I have found weekly Taxol to be easier. So far, I haven't had any tingling or numbness.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited December 2015

    Sammy, I never wore my contacts on chemo days. In fact, I didn't wear my contacts much all during chemo. My eyes seemed to be drier.

    I did not get Perjeta after my chemo treatments were done but I have read about some women that have. I'm sure the specifics of your staging and insurance determines whether you do. I was able to get Perjeta adjuvant. My insurance never even questioned it.

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  • Musosgirl
    Musosgirl Member Posts: 387
    edited December 2015
    To clarify, I think you get Perjeta adjuvant if all your chemo is post-surgery, but only in combo with other chemo. My MO said I would get Perjeta at my Herceptin only infusions until surgery, then he had to stop it.
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  • Mommato3
    Mommato3 Member Posts: 633
    edited December 2015

    FDA approval was based on Perjeta being given neoadjuvantly. There have been a few women that have said they received Perjeta neoadjuvantly and then again adjuvantly with Herceptin for the remainder of the year. Idon't think the guidelines are as strict as they were when it was first approved.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2015

    I got my Perjeta neoadjuvantly, so I didn't get it as a part of my adjuvant treatment. Frankly, I don't think my insurance would have paid for it. Perjeta ain't cheap.

    Sammy3: I wore scoop neck shirts for infusions. Elastic waistband pants are handy for shots -- I still get Zoladex shots in my tummy once a month.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited December 2015

    sammy, i once had a bad chemo brain day and showed up for my tx in a turtleneck. LOL. No prob. I lifted up my shirt, they popped the port, tucked the tube down the front and connected it. LOL. So just wear comfy clothes. If your feet get cold take off your shoes and pop on the hospital socks with the rubber bottoms, I'm sure you have t least one air. And if you're cold, ask for a blanket.

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  • rhp268
    rhp268 Member Posts: 24
    edited December 2015

    My protocol involved taxol from the beginning and I had a pathological complete response. So don't worry about efficacy with taxol. It can work quite well.

    I have also been on herceptin and perjeta since before surgery and I am allowed to continue through the end of the year. I think the criteria for perjetainvolved a tumor over two cm and nodal involvement.

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  • Sammy3
    Sammy3 Member Posts: 136
    edited December 2015

    Ok I am as ready as possible to start. Port was installed yesterday, and my first chemo is tomorrow.

    Question - in my case I had a lumpectomy in Nov that left me with clear margins and negative nodes. I am still planning on bilateral mastectomy next year due to brca. But I am just curious - how will I know if this chemo did what it was supposed to? I know some of you have a tumor to track, etc. For me, is it just a waiting game? Its again on my list of questions for oncology, I was just curious of your experiences.

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  • rleepac
    rleepac Member Posts: 755
    edited December 2015

    The benefit of having a BMX is that they will be able to tell if you had a pathologic complete response to chemo when they send your breast tissue to pathology

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  • KateB79
    KateB79 Member Posts: 747
    edited December 2015

    I have a rads consult tomorrow. Wish me luck. With my age (36), the fact that I had multifocal tumors, triple-positive, yada yada. . . I really hope I don't need rads. My surgical margin was 1.5 mm, for whatever that's worth. I'll probably check in tomorrow with the million questions that I'm sure to have!

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    Sammy3, rleepac is right, they'll know when they send the tissue for pathology. For me, I had to have neoadjuvant chemo, and then surgery. My BS declared me cancer free, as they got clear margins, did dye testing during surgery, and got everything... the path showed more scar tissue than cancer, so the neoadjuvant progress was easy to see in my path report. My BS did say that if I'd had surgery then chemo after, I'd have to wait for path report after the BMX...

    KateB79, praying your rads consult goes well. I have to have rads, even though I did chemo, BMX, and got clear margins, and they removed it all. Mostly because I'm triple positive AND it was ILC. since ILC tends to be sneaky, BS said she wants to make absolutely certain that any little bugger cells that may have even tried to hide are zapped. Sending you good vibes, prayers, and virtual hugs...

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited December 2015

    I'm still a member of both the triple positive and triple negative club. Have had my surgery, and start chemo next week. I also have to stay on Femara for the triple positive cancer.

    Not looking forward to chemo at all.

    At least I don't have to have rads, something to be thankful for.

    Trish

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2015

    Trisha-Anne -- I wonder how rare your situation is. Talk about a double whammy! I assume your surgery went OK, or you wouldn't be cleared for chemo. No, chemo isn't a picnic, but I wish you the best.

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  • debiann
    debiann Member Posts: 1,200
    edited December 2015

    Anyone with panic attacks? I had them for a couple years during menopause. They would come while I was sleeping, and wake me suddenly. Heart would race, aggitated, sweaty, thought for sure it was a heart attack. After lots of tests and some trips to the ER, it was decided it was panic attacks related to menopause. They stopped completely about a year before my bc dx. Now, after a little over a year on arimidex, they are back.  Anyone else experiencing this?

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  • Sammy3
    Sammy3 Member Posts: 136
    edited December 2015

    I survived my 1st chemo infusion yesterday. Interestingly enough I also got the call that day that my BRCAs were negative. So I guess I am just a random case. I hope I can get through this cycle without any major problems. Thanks for the advice above.


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  • wabals
    wabals Member Posts: 242
    edited December 2015

    Debian I have had them since I was a teenager but they stopped when I was put on an SSRI. Talk to your doctor

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    I started getting panic attacks. I am on tamoxifen and my RO says they are directly related to the med.

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  • KateB79
    KateB79 Member Posts: 747
    edited December 2015

    I keep hearing that my case is unique. I'm all for being unique, but it's not a word that I typically like to associate with crap like cancer.

    Next decision: rads or no rads? I'm in a gray area, according to the radiation oncologist, who is taking my case to the tumor board next week before making an official recommendation. Who has had experience with chest wall rads who might care to share her experience? I'm slim, which I'm told can lead to more SEs, but the nurse also said that, compared to chemo, rads are a cakewalk (other than getting there every day for six weeks). I welcome any and all information, good or bad.

    His proposal is five weeks of chest wall radiation (nothing to any lymph nodes), followed by a week of boosts to the mastectomy scar. Eek!I keep hearing that my case is unique. I'm all for being unique, but it's not a word that I typically like to associate with crap like cancer.

    I have a lot of risk factors. I'm young (36), triple-positive, and had relatively close margins. My largest tumor was 2.3 cm, and it was accompanied by a surprise 1.2 cm tumor. Grade 3.

    **edited to get rid of the repetition in my original post.

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