TRIPLE POSITIVE GROUP

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2017

    Apple cider vinegar - go figure! I have some here and will try it. It's not really a big pain, but it's something I've definitely noticed.

    Kae - how many doses have you had and how many more? If your lump is looking gone, sounds like you're likely there!

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  • kae_md99
    kae_md99 Member Posts: 621
    edited April 2017

    posey girl, had my 3rd last friday.after the first cycle, lump can hardly be felt anymore. last saturday, a day after 3rd cycle, i cannot feel it anymore nor my husband. will follow up with MO next week. i dont think i can tolerate full dose taxotere from now on.will see if i can do half a dose for the remaining cycles...

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

    posey - you need the raw organic apple cider vinegar that has the "mother" at the bottom - DH uses Bragg brand, shake it up first and then measure out the 2 T, and dilute with water and drink on an empty stomach. Be careful not to add anything with sodium, or much sodium, or the vinegar denatures and is rendered ineffective. I am going to start doing it too!

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  • Suburbs
    Suburbs Member Posts: 429
    edited April 2017

    Hi all. Congratulations on the tumour melt Kae md99. Hurrah. Hope all the other side effects get dealt with. PCR and NED forever!

    Getting ready for round 4 of 6 of TCHP tomorrow. This last round I never had that week where you start to feel better. I'm just spent and exhausted. The side effects are worse and I now admit freely that iam in a state of depression. I could deal with all of this easily if my tumour was gone or smaller. Right now there is no metric or test that is planned that would give me even a glimmer of hope. I'm expected to wait it out until early July when my final post-surgery pathology comes through. That's another three months on top of the initial three months of agony. This neoadjuvant therapy feels like a very cruel joke.

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

    suburbs - hold on to the thought that what you feel/see is a tumor shell, or ghost - I have seen people on BCO who had the same situation as you and then had a much brighter pathology post-op than they expected. Also, know that those who have neoadjuvent chemo at least get to know one way or the other whether the drugs had any effect, and possibly manage their treatment going forward based on that knowledge, such as continued Perjeta post-surgery or a different choice of anti-hormonal treatment. Those of us who had adjuvant chemo will never know if it was effective - we had to go on faith. Aside from shrinking tumors in the breast with neoadjuvent systemic treatment for a better surgical outcome such as better margin establishment for a large tumor with mastectomy or a smaller lumpectomy defect, the real reason for systemic treatment is to head off spread outside of the breast. I am aware that pCR is a better prognostic indicator but eradication of the tumor in the breast is not necessarily the primary goal of neoadjuvent chemo and targeted therapy for Her2+ patients, rather it is a quantitative marker of effectiveness. Not that long ago, prior to the late 2013 approval of Perjeta for early stagers, it was much more unusual for even Her2+ patients to receive neoadjuvent chemo. It was usually done as stated above for better surgical outcome. One of the reasons that Perjeta is only currently FDA approved to be given neoadjuvently, even though it is sometimes prescribed in other ways and with other drug regimens even for early stagers, is that it was a fast-tracked FDA approval drug and they are still gathering data. The approval process is a number of phased trials, but Perjeta was given somewhat of a shortcut, so it is still looked at from a confirmatory standpoint - being proven by the measurable and quantifiable method of post-op pathology.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2017

    OK, SpecialK - going to give it a whirl :). But I'm not really excited about eating vinegar LOL.

    Kae - things sound like they are going well with your tumour...excellent. As SpecialK said, sometimes you find that it's all gone when you expected some left. This happened with me. I was told from chemo session 4 - 8 that they didn't notice any change upon palpation. My path report came back with all gone in both breast and nodes. So from what you're saying - if you're feeling it going down - it's likely really going down :).


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  • kae_md99
    kae_md99 Member Posts: 621
    edited April 2017

    thanks for the encouragement Posey Girl... is pray that it is going down.

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  • deni1661
    deni1661 Member Posts: 463
    edited April 2017

    kae- I am delighted your tumor is mostly gone, great news! I pray the reduced dose helps ease your stomach issues next cycle. Hang in there.

    Suburbs - so sorry to hear you're having a tough time. I have to believe the treatment is shrinking the tumor even if you can't feel it just yet. Specialk has a lot of encouraging points, most important is that neoadjuvant can halt cancer spreading outside breast. My biggest concern has been pCR and waiting has caused anxiety. Faith is all we have sometimes and I pray you have relief from the terrible side effects you're having. Hang in there and take care.

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  • deni1661
    deni1661 Member Posts: 463
    edited April 2017

    posey and specialk - I had no idea the noise in my ears was tinnitus. I noticed it right after my first infusion, thought it had something to do with Herceptin. It is very annoying especially when trying to sleep. Thanks for the apple cider tip, I am going to try it. I haven't mentioned it to my MO but plan to on my next visit. Did either of you have tests to confirm it wasn't related to a vascular issue? It seems likely it's from the meds but it would be nice to know for sure that I don't have a blocked carotid artery or something else.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2017

    Hmmm, good question, Deni. I have my next ECG coming up and I will make a note to ask them when I'm there (i.e. if they can read anything on that). I've also heard it can be related to blood pressure or some tiny structures in your ear.

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

    My ringing literally started later in the day of my first infusion, I never really discussed it with my MO and have had no other testing relating specifically to it. I had quarterly echos during the year of Herceptin, no issues other than a minor drop in LVEF. My blood pressure has been within normal limits from prior to diagnosis to the present.

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  • shelabela
    shelabela Member Posts: 584
    edited April 2017

    that's interesting about the ringing in ears, I have that also, never gave it a thought that it started after chemo. I meet with my MO next week I will bring it up also.

    Specialk, my Blood pressure is high. They started me on a med for it which has brought it down some. My next ECG won't be for 4 weeks.

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  • Suburbs
    Suburbs Member Posts: 429
    edited April 2017
    SpecialK and deni1661, thank you for the information and perspective. I have been whining like a kid who wants a new bicycle about not having any metrics during neoadjuvant therapy when tumour is not palpable at the onset. Your notes help put things in perspective and my complaining was premature. I now have an order for a bilateral MRI which I will schedule in a few weeks. Crazy, I know, but I could have done a happy dance when that piece of paper came into my possession today.
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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2017

    suburbs - glad you will have an MRI - info is good! Don't worry about whining - we all do it, lol!

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  • kae_md99
    kae_md99 Member Posts: 621
    edited April 2017

    suburbs, that great about the MRI

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

    Well Ladies ... I am headed back to surgery. This will be number 9 in 10 months.

    I have a round lump on my left breast where my nipple once was. I have always felt something there since reconstruction but this lump came quickly in the last 72 hours.

    My PS will talk with my Surgeon. My PS is skipping any image / films as he wants it out now and there is nothing an image will show to change his mind. He thinks it is an internal suture that did not dissolve. He does not suspect cancer. My PS says this will be a quick surgery. He will go thru my original scar line and the incision will be small.

    I am OK with this. In some ways the "let's get it out now" is easier than the let's test and investigate when all this first happened.

    I am ready for this to be in my rear view mirror.

    Coach Vicky



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  • shelabela
    shelabela Member Posts: 584
    edited April 2017

    coachvicky,

    I am sure it is just a suture. Keep us posted!


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  • sfar
    sfar Member Posts: 32
    edited April 2017

    Hi all!

    I could use some input/advice.

    I started Chemo TCH in April of 2016 with a LVEF of 53. I finished the TC part in August and continued the Herceptin every 3 weeks until January when my LVEF dropped to 50%. My oncologist wants it above 50. I waited 6 weeks and had another ECHO. LVEF dropped to 40-45%. I had to postpone treatment again, so, I went to a cardiologist and started blood pressure meds for high normal blood pressure. Last week my LVEF was just50. I'm bummed and scared because I know how important Herceptin is and I still have around 5 more infusions. I am considering going to Cleveland Clinic where they have a cardiac-oncology department. Any thoughts on all of this? PS. I'm 61.

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

    Star

    I am 63 and I had the same treatment plan that you have described. My first MUGA score was 65, the second 68 and the third was 67 if I remember correctly.

    I don't know if this made a difference or not but I walk every day. I do a minimum of 30 minutes usually 40 minutes and a minimum of 2 miles.

    Best wishes.

    Coach Vicky



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

    coachvicky - last May I had a suture granuloma removed that had formed at the same location as my original tumor. It was seen on a PET scan, lit up like cancer - so a bit scary and had grown to 3cm. It wasn't causing discomfort as it was displacing my reconstruction on that side - pain was gone with removal. Wishing you the best with this - hope things go smoothly!

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

    Thanks for encouragement and information. I am feeling much better!

    Coach Vicky

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited April 2017

    Hi CoachVicky, good luck with your surgery...sounds like your onc. knows what's going on. 9 surgeries in 10 months - enough already, you poor thing!

    I have a hard ridge under my incision and am getting an ultrasound of it. Both my MO and RO think it's soft tissue, but I told them I want some imaging...


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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2017

    just got the all clear on my 6 month mammo! Birad 2. Whoop Whoop! I move now to getting a mammo only once a year...next month I hit my two year anniversary of being cancer free!!!

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

    You go girl!

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  • shelabela
    shelabela Member Posts: 584
    edited April 2017

    Tresjoli2, That's Awesome!

    @ Coach Vicky, How are you feeling today?

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

    shelabela

    Thanks for checking in. I had Herceptin treatment yesterday. I was really fatigued. My Oncologist ran some more labs and I will have an iron infusion on next Monday.

    I didn't even know what an iron infusion was until yesterday! The things a girl can learn on this journey.

    I am still set for surgery on Thursday. And feeling better today.

    It really is one foot in front on the other each day.

    For some great news, Friday was my husband's birthday. He got the go-ahead for lens replacement. That is his birthday present! He had put this off to care for me after my diagnosis in June.

    Have wonderful Tuesday everyone!

    Coach Vicky

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  • Jrodtx716
    Jrodtx716 Member Posts: 4
    edited April 2017

    well, I just got my diagnosis on March 31. And after being a professional pin cushion this week, and undergoing more tests in a short period of time than I ever did in college, I find myself missing my frat party days. Am I the only one who ever felt like a good kegger couldn't hurt after you get a cancer diagnosis?I start chemo on the 18th, and while I am finally looking forward to being skinny for the first time in a decade, I think I would prefer more time in the gym. But size 10, here I come. I also guess I get to pick a new hairstyle, and thinking of trying to be a redhead. Maybe I shouldn't have watched "Who Framed Roger Rabbit", because I now want to be a cartoon. It will make the whole reconstruction part of this interesting if I hand them a pic of Jessica Rabbit. I am freaked l am overwhelmed, and reading these boards, just might keep me sane. Thank you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2017

    Jrod-

    Welcome to BCO! We're glad you've found us, and hope these boards are a source of support for you as you begin treatment. The first days and weeks can be very overwhelming, but there's lot of info here that can hopefully put some of your concerns at ease, and lots of members who've been right where you are. Looking forward to seeing you on the boards, and best of luck with the start of your chemo!

    The Mods

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  • shelabela
    shelabela Member Posts: 584
    edited April 2017

    @coachvicky,

    Glad to hear you feel good. Keep me posted on how herceptin alone is, as I will be getting that after all this.

    Had chemo #10 today. Chemo was as usual tiring, meet with my MO and she was not happy with how my left breast felt. So I had a Mammogram with a ultrasound. Guess my main lump has shrunk, but there are 3 others. One by my nipple has grown, and attached to my nipple, the skin around my nipple is very thick now and they set up appointment to see dermatology, Have a biopsy to see if cancer moved out of my nipple some way. How the hell can it do that? Frustrating!

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  • Suburbs
    Suburbs Member Posts: 429
    edited April 2017

    Jrodtx716, welcome to the party. This board has been my salvation with information and support. I hope you have the same experience.

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