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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2018

    lily - you are not a confused husband, you are a concerned one! Perfectly natural. Some things naturally follow a certain order - if doing neoadjuvent chemo, surgery would follow and what type is a conversation to be had with your surgeon. Whether radiation is needed is dependent on surgery type and tumor location plus nodal status. If lumpectomy is appropriate radiation would automatically follow. It is less the case with mastectomy, but margins and nodal status would be determining factors. It has been my experience that surgeons and radiation oncologists are an important part of your treatment team, but the long term relationship - and advisor regarding future risk - is your medical oncologist. For us TP folks, anti-hormonal meds are prescribed - generally aromatase inhibitors for post-menopausal, and Tamoxifen for pre-menopausal, but recent trial data does show advantage for the use of ovarian suppression and aromatase inhibitors for young women, and some post-menopausal women who have bone thinning or cannot tolerate aromatase inhibitor meds do take Tamoxifen. Enrolling in a trial is not that common for most early stage patients, but some of us do it. The trial I was in did not come through my oncologist, although my center does participate in them. This particular trial was a discussion point on this very thread, so I researched it and enrolled in it with the cooperation and blessing of my oncologist. As far as Nerlynx, it is a question for the oncologist, from what I have seen it is not being widely used and seems to be partially dependent on whether the patient can tolerate the side effects, which seem to be mostly GI upset. As with all treatment, it is a cost/benefit analysis.

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  • LilyCh
    LilyCh Member Posts: 193
    edited September 2018

    SprecialK, thanks so much!!! we really appreciate that!!!

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  • MACTAZ
    MACTAZ Member Posts: 597
    edited September 2018

    Trisha-Anne and SpecialK, you give us hope and inspiration. Congrats

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  • Mommato3
    Mommato3 Member Posts: 633
    edited September 2018

    Congrats SpecialK!! I truly appreciate all the help, encouragement and inspiration you provided to me when I was first diagnosed.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2018

    Thanks guys!

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2018

    I love reading the success stories.

    After diagnosis I placed this quote on my webpage at my treatment center.

    The devil whispered in my ear, "You are not strong enough to withstand the storm." I whispered in the devil's ear "I am the storm."

    Vicky

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  • Annie60
    Annie60 Member Posts: 328
    edited September 2018

    coachvicky- I LOVE this quote. Thank you.

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  • Jstarling
    Jstarling Member Posts: 139
    edited September 2018

    Thanks for the inspiring stories. I have had my Herceptin suspended for a second time because of a decreased flow rate. I have completed 7 Herceptin infusions and hope some time for my heart toheal will allow me to continue later. Meanwhile I only have a week of radiation left. Has anyone else stopped Herceptin so soon or been able to go back and get more done?

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  • Princess_Meg
    Princess_Meg Member Posts: 80
    edited September 2018

    Hi Jstarling, I also had to stop my HP after 5 sessions due to decreased flow rate too. I just resumed back on Thursday (2 days ago) after 9 weeks break so I only missed 2 sessions. Hang in there, you will be fine.

    CoachVicky, that is my exact favorite quote “ I am the STORM” lol

    Special K and Trisha-Anne congratulations on your milestone! Thanks for sharing. Wish you more years of NED❤️

    Princes

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  • Princess_Meg
    Princess_Meg Member Posts: 80
    edited September 2018

    Hi deni1661 you are right and that is why I have moved the surgery further. I have a new date 20th November, that means I will be spending thanksgiving at the hospital. Thanks for being sweet.

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2018

    Princess ... I work to avoid a hospital stay over a holiday. It isn't always the regular shift. Are you 100% positive your surgeon will be on call or will it be someone else? Not trying to sound an alarm ... just want you to be sure you can get to YOUR surgeon / doctor if needed.

    Vicky

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2018

    princess - thanks for the congrats! I have somehow lost track - which surgery are you having?

    Jstarling - there are a number of members who had difficulty with maintaining LVEF and had to discontinue H. I think blownaway, fluffqueen, moon, and deniseg all did - I can’t remember if fluff restarted, but all are currently NED I believe. I know it’s hard to stop the med that is so important, what is the plan - pause and recheck LVEF

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  • shelabela
    shelabela Member Posts: 584
    edited September 2018

    Good morning! So sorry I have not been around. Started a new program at work for the new freshman students that start. I work at a college.

    But an update on me. I've lost 32# in 7 months. My MO was worried, threw all the possible causes at me. She ordered a PET scan that came back normal!!! Thank you god! She is not sure why I am losing weight. I eat the same as I always did. Haven't changed how I exercise. So i guess I will just enjoy the weight loss. Sucks cuz I am constantly buying jeans. Lol.

    There are so many new faces I am not even going to try to hit them all. Welcome to all of you. You have found a wonderful site here. This thread is amazing.

    I have had my exchange surgery and so far am very happy the results. I think I will end having 1 more fat grafting to even the boobs out. My PS listened to what I wanted and did very good at fulfilling that. Now if I could just find a freaking comfortable bra. Lol

    The quote that got me through everything is.

    "No matter how you feel, get up, dress up, show up, and never give up!"

    : faith hope love! I have attached the Tattoo I actually got 3 days before I even knew I had cancer

    image

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  • deni1661
    deni1661 Member Posts: 463
    edited September 2018
    specialK - congrats on your 8 year milestone. You have, from day one, been such an inspiration to me and so many others on this thread. You give us all hope and encouragement for which I will always be grateful :-)
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  • deni1661
    deni1661 Member Posts: 463
    edited September 2018
    Trish - congrats to you also on your 8 year milestone! You are awesome, thanks for all your encouragement
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  • deni1661
    deni1661 Member Posts: 463
    edited September 2018
    Jaboo - I pray you have a great meeting at your 2nd opinion appointment this week and the information they provide helps with your reconstruction decision.
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  • deni1661
    deni1661 Member Posts: 463
    edited September 2018
    Princess - Coach Vicky brings up a great point, make sure you are getting your surgeon over a holiday. I wouldn't want anyone else but my surgeon and thankfully, he wouldn't allow anyone else - he even did my nipple tattoo which totally surprised me and made me appreciate him even more.

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  • deni1661
    deni1661 Member Posts: 463
    edited September 2018
    Coach Vicky - I LOVE your quote and how you are always able to inspire us!

    Shelabela - I LOVE your tattoo, isn't it interesting how you got that before your diagnosis? Another example of how God works in our life. I like your quote too, great advice for everyone really....no matter what a person may be going through. I am glad to hear your weight loss is not due to anything specific and that your doctor made sure to run tests to be sure (good doctor). Maybe your metabolism changed after treatment - that would be a great side effect! The only comfortable bra I can wear these days is a sports bra. It helps with the mild lymphedema I have under my arm.
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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2018

    deni - thank you, you are sweet

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  • Princess_Meg
    Princess_Meg Member Posts: 80
    edited October 2018

    Hi CoachVicky, thanks for your concern. My surgery is on Tuesday and yes he will be on call on Wednesday, he isn’t sure about Thursday (thanksgiving day) but said he will make himself available should anything arise as he will be in town regardless.

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  • Princess_Meg
    Princess_Meg Member Posts: 80
    edited October 2018

    Special K I am having my exchange surgery. Implants with a bit of latissimus dorsi muscle to create extra pocket. I told him I want the new boob to look as good as possible aesthetically so he suggested that. I am small framed with no fats on my stomach area needed forDIEP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    princess - are you remaining hospitalized beyond the surgery day? Is that because of the lat dorsi aspect? Or are we worried about on-call availability through the holiday weekend if you experience issues at home? I apparently have lots of questions, lol!

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  • Eily333
    Eily333 Member Posts: 21
    edited October 2018

    Thanks for your post.

    I have a referral in for a second opinion...my oncologist was very defensive when I asked her for another opinion. She indicated I wouldn’t be told anything different than she already told me. With that type of response I was definitely getting another opinion. Even if I hear the same opinion, I will feel better for pursuing one.


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  • Princess_Meg
    Princess_Meg Member Posts: 80
    edited October 2018

    SpecialK no worries with the questions at all😁

    The 3 days hospital stay is because of the lat dorsi. Recovery is similar to MX and TE placement surgery

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  • Princess_Meg
    Princess_Meg Member Posts: 80
    edited October 2018

    Eily333- good you are getting a second opinion. Even though I never did and that was because I felt very comfortable with my team. I had a long list of questions for each of them and they answered every one of them.

    I will be disturbed too if my MO is being defensive. Boy! The man gets a long list of questions each time I see him and he's never tired of providing me with answers with a smile.

    Do whatever you have to do for your peace of mind❤️

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  • Suburbs
    Suburbs Member Posts: 429
    edited October 2018

    SpecialK, congratulations on achieving a fantastic milestone and thank you for being here to share with us.

    Shelabela, thanks for checking in. It is good to hear from you. I keep hoping that cherry-sw and KimCee would check in and say hello too.

    Deni1661, I hear you. My sports bras are more like training bras from years ago. It’s been hard to find anything tolerable. Hanes makes a stretchy striped fabric cotton one. In the days before diep it would not have provided any support.

    As for me, I had a another surgery in August to debride my infected abscess from an old drain track. It ended up being more involved with mesh also removed. I’m still taking 2 antibiotics but things have improved. I’m hoping this chapter will end this year. I’m getting ready to pass my two year milestone. The last 2 years have felt like a lifetime. When I started here I could not wait to return to my old life. I realize now that that was not a realistic goal. I’m just grateful to be on the mend. The rest will take care of itself.

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  • tld2017
    tld2017 Member Posts: 102
    edited October 2018

    Hello, beautiful ladies! Once again, I want to say how grateful I am for this site. I have told new friends that I've met during my cancer treatment about this website and I know they have joined as well!

    I continue to have pain in my left breast area even though it's been almost 2 months since my radiation ended. The doctor did an ultrasound last week but thank goodness it came back normal. I just finished up an antibiotic because they wanted to try that thinking it might be a tumor bed infection, but I still have the same pain so I don't think that helped. I go in for my next Herceptin/Perjeta infusion today so I'll talk more about it and what the next steps should be then.

    Quick question! I am almost at the 4-month mark since chemo ended. I've noticed in the last week or so that my eyebrows and eyelashes are falling out again. :( Is this normal? I can't really find much about it online. For some silly reason, this is bothering me more this round than it did the 1st time. Anyway, just wondering if this happened to others as well. Thanks so much, everyone!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2018

    Trisha Anne and Special K! Congrats on reaching your milestones!

    tld2017 -- I'm almost four years out from my last chemo, and I still have sad eyebrows and eyelashes. I draw in my eyebrows, but have given up on my eyelashes. It saves me 10 minutes every morning, the 10 minutes I used to spend applying mascara. I do have false eyelashes, but I'm not particularly skilled at attaching them. It is what it is. I'm less vain now than I used to be. It's all a part of the new post-cancer me.

    Suburbs -- I really, truly hope that this last surgery puts you on the mend permanently. You have been through so much for so long. I've always said that triple positive cancer is a marathon not a sprint, but your situation deserves its own category. ((Hugs))

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited October 2018

    tld—what I’ve read on this site is that normally your lashes are always falling out and being replaced here and there (like head hair), but chemo puts them all on the same schedule so they all fall out at once and then grow back in together. I’ve read this can happen a few times post-chemo but should start to get back to normal (only losing a few at a time) soon. At least I hope so. .

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited October 2018

    Dang Suburbs ... I pray this infection goes away!

    TLD2017 ... My brows and lashes remain different. As for the brows, the actually look more feminine and not like my Daddy's. I found a product at ULTA called "Gimme Brow." It is a small brush that colors the invisible brow hair. It was $24 and I thought that was expensive compared to a pencil but the effect is far more natural.

    My lashes are just thinner and yes, they fell out several times. I use IT Mascara from ULTA. It gives great length.

    Here is the deal ... it will most likely be a year from treatment before your body adjusts. I remember the Nurse Practitioner telling me the year timeline and I did not believe her. Well, it is a year and one month from my last Herceptin and I have nails again. I guess she was right.

    Princess, one more question about your surgery date with some background first. We all have "anniversary dates" (i.e. date of diagnosis, date of surgery, date of treatment beginning and ending). Are you sure you want your surgery date associated with Thanksgiving? I guess I am focused on this because Thanksgiving is one of my favorite holidays.

    About bras ... for night time and other causal times, I wear the camisoles with the bra insert from Kohls' Junior department. I get them on sale and use a 30% off coupon. They wash well on delicate and I dry them on a dry rack. WhippetMom recommended them.

    Vicky

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