TRIPLE POSITIVE GROUP

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  • BabyRuth
    BabyRuth Posts: 107

    Dancetrancer- it is a really strange scenario from 4 years ago as my EF did drop during the treatment but by the time I ended my treatment and had my last echo in early 2010 my rate had come back up to EF 60. I did have different technicians who did all of the echos and my cardiologist says they are very subjective. My cardiologist says this is definitely from the herceptin and my MO says it is not. So I have two professionals with differing opinions and I am not sure who is right. In the end I don't guess it really matters.

    I will just do the taxol and pray that it works. Taxol does not seem to be very cardio toxic so I should be able to tolerate it okay. I am not staring until mid Sept because they are allowing some time to heal after the radiation. I am grateful to have a few weeks of down time!

  • dancetrancer
    dancetrancer Posts: 2,461

    Thanks for the details BabyRuth.  Enjoy that time off from treatment and wishing you all the best with Taxol!

  • arlenea
    arlenea Posts: 1,150

    BabyRuth:  I know about the Coreg.  I was on it too and couldn't figure out why I couldn't exercise like before...it was because my pulse wouldn't go above 58.  I'm off it now and EF staying at 65 (before treatments it was 73ish.  It just takes time.  Good luck with your treatments.  They are moving so fast with treatments.

  • arlenea
    arlenea Posts: 1,150

    Forgot to mention that I really think the Coreg helped to return my EF to normal...as much as I disliked being on it.

  • PatinMN
    PatinMN Posts: 784

    Baby Ruth, I did weekly taxol + Herceptin and had very few side effects. I hope that will be the case for you too! Mostly I had constipation, but there's plenty of good stuff that works for that little annoyance. Neuropathy is also a common problem with taxol; there are supplements that can help with that. I have two more Herceptin infusions and then I'm done with my year. I'm grateful my EF hasn't dropped, but your situation is worrisome - showing up years later. And you had no symptoms, right?



    I'm one of several women here who used cold caps to save hair. The caps worked perfectly for me with weekly taxol - I lost almost no hair at all. If you want more information there's a cold cap thread in the "help me get through treatment" section, or just ask.

  • vballmom
    vballmom Posts: 153

    Babyruth - have you seen the Herceptin Heart Attack thread? Lots of good info in there.  I am on Lisinopril and take CoQ10.  My EF has stabilized and I was able to go back on Herceptin.  I also have pretty low blood pressure.

  • moonflwr912
    moonflwr912 Posts: 5,945

    Baberuth, conngrats on finishing Rads. My EF dropped to 42 . I was pulled off herceptin at the halfway mark. It went back up to 63 about three months later.

  • BabyRuth
    BabyRuth Posts: 107

    Thanks for all the additional info ladies.  I will have to read the thread you referred to over the weekend when I have some free time.  I am spending way too much time working these days and not enough time playing!  I really have not had any side effects from rads this time, wish I could have done cyber knife the first go round. It was so much easier than the standard rads I did last time.

  • camillegal
    camillegal Posts: 15,710

    Babyruth that is so good to hear and I hear good things about this procedure too. I'm glad u can keep busy, but don't forget to take some time for u;rself too.

  • Pbrain
    Pbrain Posts: 773

    Baby, heart failure runs in my family on both sides, so I turned down my MO's suggestion of adriamycin.  He agreed and after the taxotere/carboplatin (1 dose) fiasco, he put me on taxol.  I did a lot of research to make sure that it wasn't cardiotoxic and it isn't.  I had a herceptin vacation (6 weeks) because my LVEF went from >70% to 55% all of a sudden.  I'm still at 55% but getting herceptin and another echo.  We shall see.  If they take me off it after this treatment, that will be ok because I've done ~ 3/4 of a year.  But I also know I was highly Her2 neu +....decisions, decisions.

    The beta blocker will help with your EF (Arlene is right), but so does cardiovascular exercise.  In fact that is probably the best way to build the EF (in line behind maintaining a normal BP).  Keep yourself very hydrated to avoid a low BP and get on that treadmill (I know, easy for me to say).

    I am the Midwestern Queen of Sleep.  I'm like Ashla, could sleep standing up.  The only time I ever got insomniac was with the oral steroids before and after chemo and at the end of radiation.  I understand why with the steroids (those things are EVIL!) but I think with radiation I had reached the point of utter exhaustion.  Do you know what I mean, you are so tired you are wired?

    Anybody get tested for c. diff after all of their treatments?  I'm still having issues with the big D and I think I'm too far out from chemo to have these problems.  Maybe I need probiotics?

  • Pbrain
    Pbrain Posts: 773

    Oh, and I just wanted to tell all of those currently getting chemo or who are recently finished--keep the faith!  I finished on Feb. 22nd of this year and 2 months ago I couldn't even participate in my company's Global Walk for Children with Aids, which was ~ 2 miles.  Fer cryin out loud, I was still weak and dragging.

    Today my dog and I walked for miles and nothing hurt, I wasn't gasping for air, I didn't feel like I was 107 years old.  Besides still having really short hair, a super sore boob from radiation, a few warm flashes from the arimidex and many new extra pounds, I think I'm myself again!  Foot in Mouth  So seriously, know you will feel good again too!

  • NickyJ
    NickyJ Posts: 372

    Pbrain,

    I know exactly what you mean😊

    I finished chemo in early march so we're roughly the same time frame; now I remember what it feels like to have energy!! I tried my best to keep things as normal as I could for my family while I was having chemo and I did a fairly good job - I got my three kids up every morning for school and gave them breakfast; I cooked dinner every night even if there was no way I was eating it! But it was tough going. Now I feel almost back to normal (whatever that is!). I have the energy to do what needs to be done, and even a bit extra! Long may it last !!

    Nicky

  • bren58
    bren58 Posts: 688

    Pbrain, I am so glad you are feeling like your old self, and I love the new picture!

    Nicky, glad you have your energy back too!

    Always good to hear positive reports!

  • moonflwr912
    moonflwr912 Posts: 5,945

    Pbrain, I am1 year PFC and I am still dealing with the big D . of course the latest is caused by surgery last week. But I have had ongoing D problems. The dx is most likely IBS. I wouldn't worry about Cdiff if you have formed stools at all. But if you have formed, semi formed and unformed, its probably something else. A probiotic can't hurt, though.

  • Pbrain
    Pbrain Posts: 773

    Thanks guys!  I so wish I felt like this this spring when it was the big garden clean up.  I never had a "garden reveal" this year because it looks like crap!  I did nothing during that important time except plant some pretty annuals (and sleep and play online bingo--lazy a$$).

    Moon, hmmmm, yeap I have formed stools.  Not every day, but recently most days.  I guess I will just keep taking immodium and try probiotics, go get some Activia.  I wanted to get off of the immodium because it finally is causing me constipation (during chemo it was like a sugar pill; I took 8 one day and knew it just wasn't working...)

    I hope you are doing a-ok after your reconstruction surgery :-)  This leads me to a question for everyone--if you were 54 (like me) no boyfriend in sight and done with the dorks still left out there, tired of all of this bc crap and you needed a mastectomy, would you consider not going through reconstruction?  What are the pros and the cons?  I kind of think of this because my external beam radiation makes me no longer a candidate for a lumpectomy if this comes back...

  • camillegal
    camillegal Posts: 15,710

    PBrain, that's a good question--I;m much older so I wouldn't even consider going thru it.

    And I've had D for almost 6 yrs now with no reason from them, but recently it has slowed down alot but think it's from my colon going rogue and one part climbing up my side, moveing my liver into my ribs---but D is much less had it all the time I've actually been daring enough not to wear Depends everyday so I've come a long way in 6 years Oh except for my circus of my flying organdas inside.

  • websister
    websister Posts: 405

    PBrain - I am 55, married and had to have UMX due to extent of breast involvement and previous lumpectomy. I haven't had reconstruction and am considering not having it. At the moment I just feel like I have had enough, maybe I'll reconsider later. I am just looking forward to finally being through Herceptin in October and hopefully getting 'de-ported' after that.



  • moonflwr912
    moonflwr912 Posts: 5,945

    Pbrain, I am 58, gonna be 59 next month..I thought reconstruction would be easier. D*mned "scenic detours"! Guess you make the best decision you can at the time you make it. Much love.

  • lago
    lago Posts: 11,653

    BTW just to let everyone know who is currently going through treatment… you will feel like yourself again and look good. It's hard to believe but you will. Sure you will have a few changes but we all change… it's called living. The other day I met a gal from this site. She lives on the east coast but originally from here. The first thing she said to me was how healthy I looked. It's almost 3 years (August 31st) since I started treatment (surgery first). I feel great, granted 7lbs heavier but who's counting.

  • cypher
    cypher Posts: 447

    Pbrain, love the new picture and glad to hear you're doing well.  But what is Cdiff?

  • specialk
    specialk Posts: 9,299

    pbrain - you have to eat a lot of Activia to get the probiotic benefit - 2 servings a day, that is a lot of dairy.  I have tried to stay away from dairy if possible because it is basically the product of a lactating animal and full of hormones, antibiotics, etc.  IMHO you would be better off with a supplemental probiotic without the dairy and added calories of the yogurt.  I just checked the strawberry flavor - it has 17 grams of sugar per serving.  I had Big D as a SE throughout chemo, 10 days each tx.  It was my most frequent, and longest lasting, SE.  During Herceptin only the onc nurse recommended I start a supplemental probiotic since I was still having issues - fixed me up very quickly, still take it.  As far as recon, Moonflower and I took the "scenic route" but I have no regrets.  I have a husband, but I did it for myself, he would have loved me without it.  The pros for me are that I feel more like myself with it, the cons are in my signature line, lol!

  • lago
    lago Posts: 11,653

    Last night I was at the Chicago Sky breast health awareness game. They made a big donation to ACS. They also had some of us survivors participate. We also got a T Shirt and a basket ball.

    http://i1088.photobucket.com/albums/i323/lauren3g/DSC02153_zpscb29509a.jpg

    Video that my Dh took: linky

  • Honeybair, a HUGE congrats on getting through your surgery. Hope the pain levels continue to be manageable;

    BabyRuth, so glad that the cyber knife radiation has gone well. Keep the faith!!

    Here is an article about a particular biomarker for which we can be tested. After finishing five years of Tamoxifen, if this biomarker's measurement is high, it indicates that the likelihood of recurrence is greater in women who were lymph-node negative, ER-positive.  SOLUTION: Take letrozole. Read and enjoy:

    Prediction of Late Disease Recurrence and Extended Adjuvant Letrozole Benefit by the HOXB13/IL17BR Biomarker

    Dennis C. Sgroi, Erin Carney, Elizabeth Zarrella, Lauren Steffel, Shemeica N. Binns, Dianne M. Finkelstein, Jackie Szymonifka, Atul K. Bhan, Lois E. Shepherd, Yi Zhang, Catherine A. Schnabel, Mark G. Erlander, James N. Ingle, Peggy Porter, Hyman B. Muss, Katherine I. Pritchard, Dongsheng Tu, David L. Rimm, Paul E. Goss

    Abstract

    Background Biomarkers to optimize extended adjuvant endocrine therapy for women with estrogen receptor (ER)–positive breast cancer are limited. The HOXB13/IL17BR (H/I) biomarker predicts recurrence risk in ER-positive, lymph node–negative breast cancer patients. H/I was evaluated in MA.17 trial for prognostic performance for late recurrence and treatment benefit from extended adjuvant letrozole.

    Methods A prospective–retrospective, nested case-control design of 83 recurrences matched to 166 non-recurrences from letrozole-and placebo-treated patients within MA.17 was conducted. Expression of H/I within primary tumors was determined by reverse-transcription polymerase chain reaction with a pre-specified cut point. The predictive ability of H/I for ascertaining benefit from letrozole was determined using multivariable conditional logistic regression including standard clinicopathological factors as covariates. All statistical tests were two-sided.

    Results High H/I was statistically significantly associated with a decrease in late recurrence in patients receiving extended letrozole therapy (odds ratio [OR] = 0.35; 95% confidence interval [CI] = 0.16 to 0.75; P = .007). In an adjusted model with standard clinicopathological factors, high H/I remained statistically significantly associated with patient benefit from letrozole (OR = 0.33; 95% CI = 0.15 to 0.73; P = .006). Reduction in the absolute risk of recurrence at 5 years was 16.5% for patients with high H/I (P = .007). The interaction between H/I and letrozole treatment was statistically significant (P = .03).

    The clinical applications of our findings apply to many women with ER+ early breast cancer. First, 5 years of adjuvant tamoxifen remains the standard adjuvant therapy for premenopausal women most of whom are menopausal after chemotherapy and 5 years of tamoxifen and are therefore potential candidates for extended AI therapy. Second, although upfront AI adjuvant therapy has become more common, 5 years of tamoxifen remains a common adjuvant therapy among postmenopausal women globally. Identifying which patients are vulnerable to a late recurrence and who among them will benefit from extended therapy is of substantial clinical value. Our biomarker should allow many women to avoid unnecessary treatment and for the focus to center on those in most need of therapy. This, in turn, could improve compliance with medication and further improve outcomes.[21–24]

    DISCUSSION: . . . . In conclusion, we have demonstrated in a prospective–retrospective analysis of the MA.17 trial that patients with primary tumors with a high H/I index who are disease-free after 4.5 to 6 years of adjuvant tamoxifen therapy receive benefit from extended adjuvant letrozole therapy. Performance of H/I in predicting treatment benefit from extended AI therapy for women who have used tamoxifen for less than 5 years and those who have taken upfront AI without any tamoxifen for 5 years awaits prospective–retrospective analyses of currently ongoing trials such as MA.17R, NSABP42, and others.[25,26]

    Conclusions In the absence of extended letrozole therapy, high H/I identifies a subgroup of ER-positive patients disease-free after 5 years of tamoxifen who are at risk for late recurrence. When extended endocrine therapy with letrozole is prescribed, high H/I predicts benefit from therapy and a decreased probability of late disease recurrence.

    QUESTIONS I HAD: No HER-2+ gals were in the study, so how much does it relate to us? No mention of if patients received radiation treatments or not; again, for those of us who have been radiated, how much do the results relate to us?  Yes, questions abound, but at least when you meet your oncologists, you can ask to have the biomarker measured.  A big issue for all of us taking endocrine therapy is are we being overtreated?  If we can reduce this issue, so much the better.  Have a great day, everyoneLaughing.

  • bren58
    bren58 Posts: 688

    Great pictures lago!

  • camillegal
    camillegal Posts: 15,710

    Lago i don't know how I missed these pics--Great and how nice of u'r DH for taking care this job--U 2 sound so together in life. Wonderful

    Cypher PBrain will totally explain Cdiff---but again it has to do with a big D problem that causes chronic D-it's easily taken care of but sounds disgusting unless they came up with a new way. I think it's bacteria formed. I've been thr so many tests I really don't remember if that was just a stool test.????? Cypher u know I can't explain well.

  • Pbrain
    Pbrain Posts: 773

    Cypher, c. diff is clostridium difficile, and difficile is from the Greek for difficult (to get rid of).  It is a bacteria that kind of tends to take over all the other flora in the colon if you are on long-term or IV antibiotics.  So it is a biggie in hospitalized patients.  The entire time I was in the hospital (5 days) they had an IV full of antibiotics hooked to my port.  Plus using the prilosec type drugs (proton pump inhibitors) and having chemo makes you more susceptible.  So during treatment, a lot of us are very good candidates for infection.  However, doctors don't think of it right away because they just tell you the big D is due to chemo.  It is something we should all be aware of because we are/were perfect candidates.

    Here's the wiki link.  You can easily get rid of it with the right antibiotics, but it isn't always diagnosed.  

    http://en.wikipedia.org/wiki/Clostridium_difficile

    So WOW!!  Special K, I've been thinking so much about foods that could have supplemental estrogens, and I never thought about dairy.  I'm a ding dong, pretty much more urban than rural, so I didn't think about giving dairy cows hormones.  Plus I know enough to realize that the milk products are probably full of endogenous hormones.  DUH!  I'm not much of a meat eater, may have 1-2 servings a week, so I've been very careful with meat after my diagnosis, only buying organic.  I've avoided soy and other phytoestrogens.  Dairy just hasn't crossed my mind...thank you!  I

    'll get some probiotic pills--any suggestions from anyone about which are good ones?

    Oh, and Lago, you look super cute in your video!!!

  • goutlaw
    goutlaw Posts: 268

    Ok I need to ask this...so since Im 32...I know they prefer not to take out your ovaries bc of heart etc...but lower chance of recurrence correct? So who in here had ovaries removed? Or all u ppl thru menopause? Really hoping to not get my menstrual back...bc this could cause chance of recurreonce and Im trying to prevent all ways possible

  • moonflwr912
    moonflwr912 Posts: 5,945

    Lago, you look good, hope it was as fun as it looks..

    Honeybair, Babyruth, I am glad your procedures went well.

    Gratitude, thanks for that info, very interested.

    Pbrain, my PCP gave me Impramin(sp?). It is used for depression AND IBS. One tablet didn't seem to do anything, so he told me to use two, and I think it is helping! I also take a probiotic with 10 strains, 20 million cultures including acidolphilus.

    And, Cami, you DON'T want to know how they re-colonize the bacteria in the gut if they can't get rid if the Cdiff any other way.....

  • Rhonda2
    Rhonda2 Posts: 99

    Goutlaw I'm with you. No way do I want my monthly cycle back. I had two of them through chemo (TCH x6) and that was enough. I am 50yrs old and have always been on schedule so I'm hoping it will stay away. My Onc said time will tell and for me not to worry about it which is easier said than done. I'm sorry for all your going through at such of a young age. I know it's terrifying and I think all of the woman here put up a very strong front, and after awhile that's all we can do. I didn't realize, or even think much about how I was dealing with it, until I finally sat down and cried. Last chemo was May 9th, but I still get Herceptin every three weeks and the last one is scheduled for January 16th. I was in the Onc office last Thursday for regular check up and could not stop tears from forming in my eyes. I don't remember being that sad or worried, but a friend said "there you go let it out. All of us have been waiting for you to get it out?". That only made it worse. Everyone means well, but if they aren't going thought it they really don't know how it feels. Unfortunately, where I work there have been 10 of us that have cancer and diagnosed within the last 3 years. Seems like its running ramped now or that I'm just now paying more attention to it. Anyway, I'm with you and if we have to endure all of this treatment we should not have to put up with a monthly cycle. Keeping you in my prayers.



    Rhonda

  • lago
    lago Posts: 11,653

    Thanks. The game was fun. We won and are in the play-offs!

    Rhonda I was peri meno at chemo (age 40). Had my last period 2 weeks before chemo. My sister was done at 53 and my mother started menopause at 51. My onc knew it wouldn't come back but tested me for 5 months to be sure because I went straight to Anastrozole not Tamoxifen.

    The closer you are in age to menopause the more likely it won't come back.