TRIPLE POSITIVE GROUP

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    BJI,

    My chemo journey was pretty boring. I had a little diarrhea and fatigue, but otherwise, chemo was OK. Heck, I worked full-time through chemo. I did feel awful when those on my chemo board were hospitalized and all, but I figured the least I could do was to offer them prayers and moral support. It is what it is. I have other crosses to bear (the autistic twins!); there's no need to look for more crosses if you can help it. They will find you! ((Hugs))

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2017

    BJI - I think it is important to present all of our stories about how chemo goes - both the fairly smooth and the not so much. Knowing you are getting through decently may be just the encouragement someone needs!

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  • Suburbs
    Suburbs Member Posts: 429
    edited June 2017

    Hi everyone. BMX and DIEP flap recon is done. Hurrah. It's scary. More later

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  • BJI
    BJI Member Posts: 154
    edited June 2017

    HapB - I am 62, sligttly overweight, mild high blood pressure, high cholesteral. This was my first serious illness, first surgery. I think positive attitude helps alot, the nurses tell me. Everyyhing is so unknown, scary, its sometimes hard to keep that smile.

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  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited June 2017

    Suburbs- glad to hear that it went well. I am scheduled for July 18 for BMX with tissue expanders. Do you mind if I ask where you are in PA? I'm from the Lehigh Valley and am being treated at St. Luke's.

    I have only had one brief meeting with the medical oncologist and I'm not sure what I think of him. I've been very impressed with the surgical oncologist, but the MO is not giving me the best feeling. I do think it is due to the fact that I am less worried about surgery than I am about the chemo. I have mentioned before that I am absolutely terrified to lose my hair and I'm so afraid of vomiting (and I do easily- motion sickness, morning sickness, vomiting from anesthesia.) Do you all think it is reasonable to ask the MO for a list of all things he's willing to do to prevent terrible side effects? I want and need to be able to work full time through this treatment and I have 2 young children at home who I don't want to traumatize with my being sick. Any advice is appreciated.

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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited June 2017

    toughcookie_21 - You will likely have a session with an oncology nurse to discuss the side effects of the chemo drugs you're on as well as how to manage them (OTC drugs, prescriptions, acupuncture, etc). I know I've mentioned this before, but if you're terrified of losing your hair, you should seriously consider trying cold capping. I have two young children as well, and I believe the fact that I still have most of my hair and I still look like me has helped them to not think about the diagnosis.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    toughcookie_21,

    Cold capping is an option, but if that won't work for you, go wig shopping or shopping for headwear. I felt much better about chemo when I knew I had an attractive wig waiting for me when I lost my hair. Soxfan75 is right; your oncology nurse should spend at least 45 minutes -- 1 hour, explaining potential side effects and ways to mitigate them. Also, be sure that your doctor gives you some prescriptions for anti-nausea meds before you start chemo. You can pre-medicate; I took an anti-nausea pill the day I started chemo. It turns out I didn't need it (you should receive anti-nausea meds in your pre-meds), but it gave me peace of mind. ((Hugs))

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2017

    I have some great news to share. I got my MammPrint results.

    I came back high risk at 29% for recurrence if untreated.

    If treated with chemo and hormonal therapy, my freedom from distant recurrence or death due to cancer at five years is 94.6%.

    I am dancing on what eyelashes I have.

    Vicky

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  • kae_md99
    kae_md99 Member Posts: 621
    edited June 2017

    congrats suburbs!!!!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    coachvicky,

    Sort-of makes the chemo worth it, no? I never did Mammaprint, but I assume I was high risk as well. Sadly, I still have fairly sparse eyelashes and it's been 2.5 years since I finished treatment....

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2017

    Elaine ... I finally got confidence in my treatment. So, yes, it has been worth it.

    Vicky

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  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited June 2017

    Soxfan, I am so glad to hear that cold capping worked for your with your chemo regimen! That gives me hope. I have heard that results vary depending on the type of chemo you are on. I have looked into Penguin and Arctic Cold Caps. The oncology office I've been going to seems to be really anti-cold capping, which is just adding to my anxiety. I have been really discouraged by the feedback I received from the doctor (it doesn't work and I don't believe in it) and by my family (you're being ridiculous if losing your hair is your biggest worry) and from the data I've read (results can vary depending on the type of chemo.) Depending on what changes from the surgery and depending on the type of chemo they put me on, I am really leaning towards cold capping regardless of what my family, the MO and the data says. Otherwise, I will get a wig and hope for the best. When will they have me meet with the chemo nurse?

    Edited to add- Congrats coachvicky!

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  • shelabela
    shelabela Member Posts: 584
    edited June 2017

    toughcookie21,

    I would talk to your MO about the throwing up. Make sure they know that you need every thing possible so you do not throw up. That is what they are there for. The best advice I can give you ( I am now done with chemo) is that your MO and the nurses work for you!!!!!! Always remember that. Your needs come first always. If you are sick they need to find a med to help you not be sick. I was nauseous with chemo very little. I told me MO that nausea is one this I would not put up with. I was able to work full time the whole 20 weeks of chemo.

    As for the hair loss, I hate it but I can not stand cold packs or anything like that so cold capping was out for me.

    Have they told you what chemo plan you will get?

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  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited June 2017

    Hi shelabela, no they haven't told me definitively what chemo I'll be getting yet. Until two weeks ago when I found out that I was BRCA2 positive and HER2 positive, I was going for a lumpetomy with radiation and maybe chemo if the tumor had spread or if there were any positive lymph nodes. Then I got the HER2 status and a few days later I got the genetic tests back and everything changed... ugh. They told me yesterday that they would have a chemo plan after surgery, but that it was guaranteed because they won't give Herceptin without chemo. I get that and want to improve my chances, so chemo it is.

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  • jullis
    jullis Member Posts: 4
    edited June 2017

    Toughcookie...I used Penguin Cold Caps and kept my hair. It did shed a little, but nothing obvious. I was on Taxol and Herceptin once a week, every week for 3 months. Literally no one knew what I was going through unless I told them. It is true, it depends on your chemo regimen (and how thorough your Cold Cap administrator is...it wa labor intensive.) Please reach out If you have any questions.

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  • meg2016
    meg2016 Member Posts: 287
    edited June 2017

    toughcookie_21 don't let your treatment center dissuade you from cold capping. My oncologist and nurses were all skeptics. But the studies are there that it works. It has taken off far more broadly on the west coast than a lot of the east coast, its really just so regional and hospital specific. But now my oncologist has referred several of her patients to me to ask about the process because she was amazed at my results. I actually ended up cutting my hair short after my surgery (which was after chemo) because my hair I lost started coming in so fast and furious under my thinner long hair and my look was a little crazy. But I kept hair through treatment, no wigs. I have kids and this helped a LOT I think to make them feel more at ease. I won't lie, it is a pain in the butt to add it to an already grueling day of chemotherapy. But it also is one of the few things I felt I had control over in this process. I recommend you join the cold capping thread here on BCO... tons of questions answered and real experiences. It does vary in how well it works, but I don't hear of very many people who did it who regret it.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited June 2017

    tough...my kids were 2 and 8 when I got diagnosed. Feel free to PM if you want to talk through how to handle the littles....

    They can keep your nausea under control. As for hair...i pretended it was fun. So crazy kids...mommys medicine is gonna make her hair fall out. Can u believe It? So crazy right? Then I let them tell me scarves or wigs. My son was freaked out by wigs. So scarves it was. They picked them out for me every morning...

    Hugs!

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited June 2017

    Toughcookie_21, I did Penguin Cold Caps and I saved my hair with great results. I was on weekly Taxol and Herceptin, I did shed some hair but I think only I could tell. And my vacuum cleaner which picked up a bunch of my hair. But nobody would have guessed I went through chemo. Saving my hair did wonders for my frame of mind.

    Also, FDA recently approved two different kinds of cold caps fairly recently. Don't let your MO tell you that it doesn't work. He/she simply has no experience with it and for whatever reason doesn't want to deal with it.


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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2017

    My oncologist hovered over my head after round two. He said I thought you would be bald! The treatment center I go to now offers Cold Cap Therapy because of my experience. I remain forever grateful to my husband for hauling in all those ice chest with my gel caps to save my hair. Private message me if you'd like to dialogue more about this.

    Vicky

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  • illimae
    illimae Member Posts: 5,710
    edited June 2017

    Hi there, I'm not sure if I'm considered triple positive or not. Initial results were ER+ PR- HER2+ but I also have pathology reports that specify ER 90% PR 20% HER2 3+. Is the PR actually positive or considered negative because it low at 20%. It's not a big deal, I'm just curious, thoughts?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    I haven't fallen off the Earth....

    I'm now 7 days out from round #1 and whewwww wheeeeeee ... it's been a ride...
    Friday infusion went well.. it was a long long day ...
    Last Sat was ok.. feeling funky ..
    Sunday I lost it .. it was a crazy day .. I think it was the steroids and the Zofran (sp?) absolutely can NOT take the stuff .. It makes me crazy!
    My Neulasta went off without a hitch on Sunday...
    Monday was better.. nausea being controlled well with the other anti nausea meds.. drinking a lot fluids..water and such ... walking up and down my driveway ... at night... diarrhea started... went overboard with the stool softener
    Then Tuesday hit... wow.. I could write a book... ended up in the ER dehydrated and they said I had a UTI which I still don't think I did no sx's at all..
    Wednesday back to the ER because my temp at home hit 100.5 ... but by the time I got to ER ..it was back down to normal... and stayed that way ...
    It seems I spike a little temp about 5:00pmish ...I think its the Neulasta ...

    Thursday feeling better..

    Friday feeling better.. bone pain controlled by Claritian (sp?) and cold packs... but it hasn't really been a issues..
    Nausea kept to a min. with meds..
    I have chemo mouth.. but even that seems to be better ...
    Have chemo brain.. but I'm good lol.. couldn't remember anything before all this ..
    weepy ... I just let it flow.. I've got a right too .
    diarrhea is still somewhat of a problem but going less since my MD called in RX .
    Tired as crap but can't sleep more than 4 or 5 hours ..

    Today I'm feeling better than yesterday but having a little palpitation here and there.. not sure what that's about .

    When they did my labs in the ER my WBC and RBC were good.. low .. but good .. :)

    Whew.... and just think I get to do this all again in couple weeks..

    Much love from TN
    Denise

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    FYI... do the cold caps... and ice down your fingers and toes!

    Don't let anyone tell you different .. it works.. I did 1 hr of ice on my feet and hands while getting the Taxotere.... and so far so good.. no tingling no numbness ..

    hugs from TN
    Denise

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  • solitude
    solitude Member Posts: 18
    edited June 2017

    CONGRATULATIONS coach Vicky.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    Thank you HapB

    I'm feeling better this evening ate a good dinner .. taste buds are coming back a bit... .... I think the key for me is fluids, the RN said I should drink 1/2 my weight in oz . And I've done it everyday bleahhh but it does help
    Keep moving , which I haven't everyday but tried... and take the meds on time ... whew.. its been rough... but I made it .. now on to round 2.. which I will now know more about what's going on and what to look for ...

    Cancer sucks...

    Hugs from TN
    Denise

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2017

    Thank you Solitude. I am feeling happy. My husband is thrilled.

    HapB. I did not have radiation.

    Originally, my MO gave me an 85% no recurrence based on the general population like me. I wanted the MammaPrint because I wanted to know the statistic from my tissue. When the 94.5% result came back for no recurrence if I completed all my chemo and the 5 year estrogen blocker, I had more confidence in my outcome.

    Vicky

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    The Oncotype test is not designed to evaluate HER2+ cancer, but Mammaprint can.

    Just a word of caution about calculating the risks of recurrence. As Coach Vicky notes, recurrence rate calculations assume that you will be completing at least five years of hormonal therapy. However, many women quit their hormonal therapy early, due to quality of life issues. (There are multiple threads on BCO.org devoted to this issue.) For some of these women, chemo was more tolerable than hormonal therapy, if that can be imagined.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    HapB,
    I believe all my bone pain is from the Neulasta.... ...


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2017

    hap - how fast did they run the infusion?

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    Bone and back pain are side effects of Herceptin. Typically, the first Herceptin infusion is the worst, and the side effects are supposed to lessen in future infusions.

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  • kae_md99
    kae_md99 Member Posts: 621
    edited June 2017

    had my first herceptin only last friday.what i experienced is reflux and altered taste.i believe my bone pain is from lupron... they ran it for 30 minutes..

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