TRIPLE POSITIVE GROUP

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  • Wheatscapes
    Wheatscapes Member Posts: 52
    edited November 2019

    rlmessy - Well that’s a bummer. I transferred all of my care from a community cancer center to an NCI facility to make sure I was getting top-notch care. Too many mess-ups with my old care team. So glad I did: my first breast surgeon left behind copious amounts of breast tissue. Having surgery again Friday. At least they will give me my permanent implants at that time. Have you called your oncologist and asked why they didn’t plan for a port

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  • hapa
    hapa Member Posts: 920
    edited November 2019

    They typically don't do any further scans if there was no node involvement. That is normal. The rest of it is not. I wouldn't worry too much about the pre-auth at this point. I have never heard of anyone getting denied. This stuff is all standard of care and has been for years.

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  • Wheatscapes
    Wheatscapes Member Posts: 52
    edited November 2019

    Hey everyone -

    I’m still here. Still waiting on the results of the PET scan. They said they’d have the results in one working day. It’s been two and nothing. My mind is running away with me. I had a bad viral infection three weeks ago. Had a bit of a residuals cough. Went for my 2nd Herceptin-only infusion yesterday. No cough since then. Now I’m so paranoid I can’t answer my phone. Afraid it will be my oncologist saying she wants a lung biopsy. My husband had to call them and tell them to call him with results.

    Everyone has said how well I’ve handled a cancer diagnosis, bilateral mastectomy and chemo. How brave I’ve been. I think this all has taken a toll on me and I’m now worn-down to nothing. This is just....too much.

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  • Kimmh012
    Kimmh012 Member Posts: 87
    edited November 2019

    Can someone help me understand conflicting results, I do not see MO until Dec 3.

    10/15/19 Antigen tests were done, CA 15 shows slightly high of 34, normal below 30; CA 27.29 shows extremely high of 56, normal below 38.

    BUT I had lumpectomy #3 on 11/6/19 to remove DCIS found at lumpectomy #2 and BS called and said "no residual cancer found".

    I am so confused, makes me think cancer has spread, but that conflicts with small micromets found in sentinal node back on 4/3/19...

    Dazzed and Confused

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2019

    rlmessy--just wanted to point out that not everyone gets a port. I did the Taxol/Herceptin regimen without one and was fine. My MO wanted me to try it without (which was my preference anyway). Some chemo drugs are tougher on veins and make a port more important, but lots of +++ do T/H treatment without one.

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited November 2019

    I am sorry you had so much trouble. Nurse navigators are awesome people. Have her email address handy, in case you ever need her again. Hugs xx

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  • rlmessy
    rlmessy Member Posts: 137
    edited November 2019

    Ingerp...thanks for the reminder, I thought about that but when I went for the consult the MO had said a port would be part of the plan. I think it was more her attitude that prompted my reaction to everything she said.

    Wheatscapes...I feel for you! I cared for my mom 13 years ago so I know the drill with BC. During the day I can hold it all together and everyone says they cant believe how well I am doing. They dont see me at night, shaking under the blankets and planning my funeral so my young adult sons and hubby dont have to. It comes in waves. But when in gets really bad my mom holds me and it's hard not to believe I will not make it through when she is a living testimony to the fact that BC can be beaten or at least brought to heel. Lots of loving thoughts sent your way!

    SpecialK...I think you are becoming my virtual rational big sister! Thank you for all the info you are sending my way, it truly is helpful and reassuring!!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2019

    wheatscapes - oy...hang in there! You’ve been through a lot, I get it - at one point I wondered when the series of surgical issues I had would stop. It finally did, but it also wore me down to an extent. Keeping my fingers crossed for you.

    kimm - my markers were high after chemo, and all of those tests can be affected by inflammation. My CA27/29 was higher than yours, but did eventually come down back into the normal range - it took at least 3 months though. I have had several subsequent increases, but my markers have always returned to the high end of the normal range eventually. For point of reference, a CA27/29 in the 50s is not particularly high - our metastatic sisters have seen markers in the high hundreds to the thousands. Most oncologists look for trending info from markers, if yours continue to rise, or take a really big jump, that might be more concerning. I know that is easy for me to say, but hard for you in the situation right now. Please keep us posted.

    rlmessy - lol! Happy to help

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  • Wheatscapes
    Wheatscapes Member Posts: 52
    edited November 2019

    Good news, everyone! My PET results finally came back: I am clear! No Mets to lungs, sternum or liver! God is good! So is science

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  • Jstarling
    Jstarling Member Posts: 139
    edited November 2019

    Hi MissouriCat! We just got back from a lovely Italian vacation and see that your heart function dropped because of that darned Herceptin. That happened to me three times (down to the low 40s) but it always came back with about five weeks between doses. I never needed to go on heart medications. I did finish all 18 but it took several extra months. It did mean frequent extr testing but I am happy to have completed them all and my heart function now remains normal.

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  • Taco1946
    Taco1946 Member Posts: 645
    edited November 2019

    To port or not to port is certainly an individual decision. I did (with T/H) and was glad as I have always considered myself a hard stick. Had planned to just leave it in ( in fact was feeling a little superstitious like if I left it in I wouldn't need it and if I took it out, I would be sorry. ) My center is very close but MO said she was certain I wouldn't need it again so had it removed after my next mammogram. No scar at port site. If you get one, try to allow 7-10 days before the first chemo. It can get irritated if it hasn't had a chance to heal.

    I had no cardiac complications with the Herceptin but got an echo every 3 months.

    I also learned that I don't have to always be the "strong one" or put on a "happy face." Really taught me who my friends were. Glad you have your Mom for support and encouragement. I was very open about my diagnosis and was overwhelmed by the women who shared their own stories and others who just called to check on me. On the other hand, I had to go to Facebook friends only with a college roommate because she wanted it to be about her and I didn't have the energy for that.

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  • BigPeaches
    BigPeaches Member Posts: 266
    edited November 2019

    It is a personal choice, but I do love my port. I don't even know it's there unless I accidentally bump it. They give me this lovely cream to put on it, so when they stick me I don't even feel it.

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  • LilyCh
    LilyCh Member Posts: 193
    edited November 2019

    Wheatscapes, great news!!! I told you

    SpecialK, For CA27/29, is that a special test? In what situation a blood test as such would be ordered? My wife's MO usually ordered "comprehensive" blood test, I do not believe CA27/29 is part of that, am I correct? Thanks a lot

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited November 2019

    Wheatscapes - awesome news, celebrate!! Hugs.

    Jstarling - you have made my day, thank you. I've been reading a book on getting well, and staying positive is the main focus, but those words you shared boosted me 100%, thank you very much! I hope you thoroughly enjoyed Italy and had some delicious Italian food!! Hugs to you. Lisa (will be smiling all day because of you, thank you)

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2019

    Wheatscapes--the best news!!

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  • Bob7637
    Bob7637 Member Posts: 4
    edited November 2019

    I don't do much posting have been a member unfortunately since 2015. I did do a post early this week and received a lot of positive so though it may reach a few more:

    My name is Bob I go by 1 Bravo Whiskey (1 Breasted Warrior) I am a 4 yr survivor of stage 3 triple Pos Male Breast Cancer. Had the surgery with a lot of nodes taken, 30 weeks chemo,AC+ T Projeta for the Her2 made me violently sick so they stopped that., 12 weeks of radiation, was rock bottom sick.

    I set my goals high for recovery, this yr did 2 5k runs, 3rd yr of the 26 mile Closer to free bike ride, and started skydiving, did 6 jumps from 14k feet this summer (yes I wore a sleeve) working to get my skydiving license by my 5th yr May 25th 2020 anniversary. My expiration date stamped on my butt readable only by god came and went. I am doing everything on my and my wife wish list.Cancer and treatment I wouldn't wish on anybody, but was the best worst thing that ever happened to me as I now enjoy every breath I take. Skydiving has just enhanced my enjoyment of life.

    To all out there never give up, positive attitude helps with your altitude! I hope to finish my AFF and skydive in every state and talk to as many as I can about my cancer that will listen so that they may be more aware that it can happen to them and get treatment early. I new something was wrong and waited 6 months longer than I should have. I wait no longer I JUMP into things full bore now!!

    Blue Sky's to all!

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited November 2019

    Bob, thank you for sharing that, so much. There are always these bumps in the road that you don't expect, and it is easy to get down and depressed. I get so much positive vibes when others share exactly what you did, thank you. Sharing your story and letting others know they are not alone is absolutely the best thing! Hugs and Blue Sky's to you!! Lisa

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  • rlmessy
    rlmessy Member Posts: 137
    edited November 2019

    Bob...thank you so much for your positive words!! As the mom of two boys I always love to hear great stories from "grown up" sons!!

    I am sorry your story included a chapter with cancer as a plot twist but it sounds like you have taken the best from it.

    I am newly diagnosed but my mom is a 13 year triple positive survivor who has much the same attitude. She is my role model in this and so much more.

    In one of my good moments I decided that I will "have" cancer up until my surgery on 12.18 at which time for all intents and purposes I will be cancer free. From there I am a survivor dealing with it.

    As that mom again...dont stop telling your story because men need to be educated on their risks too!!

    Wishing you blue skies and fluffy clouds!!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2019

    wheatscapes - so happy!!!

    lilych - CA27/29 is a serumtumor marker test, independent of a comprehensive metabolic panel (CMP) and complete blood count (CBC), which are pretty standard tests ordered by oncologists. My oncologist does order CA27/29 and CEA, along with CMP, CBC, and Vit D every time I have a visit, which is currently about every six months. Many oncologists don’t routinely order tumor markers because they either feel they are unnecessary for early stage patients, or are unreliable. Some docs will order them in the presence of symptoms or dubious imaging, others add them routinely.

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  • Bob7637
    Bob7637 Member Posts: 4
    edited November 2019

    I try to only have good and great days! keep your chin up over those bumpy days we all have them. Makes the great days even better!

    My wife had it framed for me:

    "My scars tell a story. They are a reminder of times when life tried to break me but failed. They are the markings of where the structure of my character was welded"

    By. Steve Maraboli
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  • Jkeet
    Jkeet Member Posts: 16
    edited November 2019

    hello everyone, my last chemo was today. My doc is not doing any scans. I’ll have an ultrasound and mammogram to decide on surgery, but that’s it. Should I be asking for anything? He said there is no need for extra radiation. Thanks!!

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  • rlmessy
    rlmessy Member Posts: 137
    edited November 2019

    Could someone help me with tumor size?

    US said 1.9 cm.

    Breast MRi says 2.0cm AP x 2.1cm TR x 2.0 cm CC with a 8mm bridge mass anterior. Together the AP dimension is 3.0cm.

    Does that mean in staging I should be using 3.0 cm?

    Thanks!

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  • Faith123
    Faith123 Member Posts: 41
    edited November 2019

    Hi Guys,

    Has anyone had 6 or more months delay in receiving Herceptin?

    Did they have progression because of the delay?

    I’ve had one H injection and I’m now sorting out drama with my medical insurance and it looks like I’m not winning and will only be able to carry on with the H injection in April next year.

    ...

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  • LilyCh
    LilyCh Member Posts: 193
    edited November 2019

    SpecialK, thank you so much for the info.

    Jkeet, the BS asked my wife to have a breast MRI (no US or Mammogram) three weeks after the final chemo and the surgery was done one week later.

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited November 2019

    Jkeet - If you're having mastectomy, then usually no radiation is needed unless there was node involvement. With lumpectomy they usually will do radiation even if no node involvement to catch any stray cancer cells they don't know about. That's the way it was explained to me, anyway back in 2011.

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  • FNPMom
    FNPMom Member Posts: 46
    edited November 2019

    Hello All, I have been reading posts - stalking lol =) - since my diagnosis last May 01 - I found changes/distortion to my right breast 7 months after a negative mammogram - I am at the adjuvant end of it - on Kadcyla as I didn't have complete pathologic response after neoadjuvant chemo - my tumor was huge at 4.3 cm; down to 1.1 cm after - was convinced it was everywhere but PET prior to neoadjuvant chemo was negative - I just want to thank you guys - this site kept me sane - Thank you

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited November 2019

    I don't really know what this list is: https://www.accessdata.fda.gov/cms_ia/importalert_...

    But I read it on this news article about Dollar Tree getting a warning about selling drugs.https://www.fox5atlanta.com/news/dollar-tree-warne...

    And it lists some manufacturers I've heard of, TEVA, although it is in Hungary, but I'm just going down the list looking. Perhaps someone that is smarter than me might know more about this. Maybe TEVA drugs we use in the USA aren't from Hungary - just a FYI.

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  • Magari
    Magari Member Posts: 354
    edited November 2019

    MCL - Thanks for sharing the FDA alert. But I tend not to pay much attention to those these days, since the FDA is virtually useless.

    I'd like to buy ally drugs from this company, if it were possible. https://www.washingtonpost.com/science/a-tiny-pharmacy-is-identifying-big-problems-with-common-drugs-including-zantac/2019/11/08/6dd009ca-eb76-11e9-9c6d-436a0df4f31d_story.html

    https://www.valisure.com/

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  • Flnana2
    Flnana2 Member Posts: 118
    edited November 2019

    FNPMom, how are the side effects on Kadcyla? I find out December 16th if I go that route or H & P.

    Thank you!


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  • FNPMom
    FNPMom Member Posts: 46
    edited November 2019

    Hello Finana2- I had my 1st dose 11/08 - on one hand it’s not bad - very mild nausea, a little tired, nothing like the neoadjuvant chemo; but I just received a call from my onc- that my liver enzymes are up - in the 500’s - didn’t quite catch if it was my ALT or AST - I somehow get a little deaf after bad news lol 😂 - we’re rechecking it this Friday and if still up, we’ll delay the next dose. I really want this drug - risk of recurrence is at the same level as if I had complete path response and was on herceptin/perjeta 😊 I hope that helps

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