TRIPLE POSITIVE GROUP

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  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    Yeah for decision made! Hope you find, like many of us do, that making the tough decisions is half the battle. It starts to get better once you have a treatment plan in place and feel like you are moving foward. Good luck with chemo.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2015

    runningcello - she is on Tamoxifen, which for some causes weight loss, others have weight gain.

  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    running cell,

    I am on arimidex, and I have heard that drug associated with weight loss in some people. I started it a week ago and lost 4 lbs, I'm small so was not trying, but it's not helping my appetite any

  • Mommato3
    Mommato3 Member Posts: 633
    edited June 2015

    Suladog, I had issues with my appetite when I first started Arimidex too. Just didn't feel like eating. It has improved. I've lost weight but it has been intentional. I still have four pounds until I'm back to my prechemo weight.

  • runningcello
    runningcello Member Posts: 110
    edited June 2015

    I hope it'll have that effect on me. I haven't gained weight from tamoxifen but I certainly wouldn't mind losing 10 lb

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Cheesequake -- I TOTALLY understand your reluctance to do chemo! No one is going to tell you it's a picnic. But, you keep mentioning permanent side effects. Other than your sex life, I'm not sure what you're referring to. My last chemo date was 12/3/14, and I have no permanent SEs. I guess some people develop neuropathy that doesn't go away, but I had minor neuropathy and it did go away. Anywhoo, it really is a very personal decision, and I wish you the best in making it.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited June 2015

    when do they usually start prolia shots? I am finished chemo, but still have herceptin infusions and 5 year pill for my cancer, I already have osteopenia and have fallen and fractured my elbow, ribs, shoulder and orbital bone. The last fall was August of 2014. But had mastectomy January 2015, and started chemo February. 2015 so now that chemo is done, forgot to ask about time frame for prolia!

  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    I don't think I have any permanent SE's from chemo either. Occassionally I get the tingly toes, but other than that I just got my port out and I'm putting chemo behind me.

  • Mommato3
    Mommato3 Member Posts: 633
    edited June 2015

    I'm another one that doesn't have any lasting SE's. In fact, I'm in better shape than I was before this all started. Well, I guess there is the problem right now with low EF from the Herceptin. But I do believe it will go back to normal when I'm done with the Herceptin.

  • lago
    lago Member Posts: 17,186
    edited June 2015

    Jerseygirl927 I started Prolia when I was diagnosed with osteoporosis. I was osteopenic before chemo which got worse after chemo/chemopause. It did go down a bit on the Arimidex and after 2 years I had the osteoporosis. I feel I should have started a year sooner. In your case, where you have fallen and broken bones I would definately meet with an endocrinologist or rheumatologist.

  • ashla
    ashla Member Posts: 1,581
    edited June 2015

    Think all of us here owe a debt of gratitude to Perelman, Lily Tartikoff and Dr Dennis Slamon...

    ( and likely hundreds of nameless researchers before him)


    Revlon...1 million donation to cancer research in honor of Dr Dennis Slamon.

    http://www.marketwatch.com/story/revlon-charts-new...

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Agreed, Ashla. The segment of "Cancer: Emperor of All Maladies" which traced Dr. Slamon's development of Herceptin was one of my favorite parts of the documentary series.

  • TTfan
    TTfan Member Posts: 176
    edited June 2015

    Suladog - congrats on running again! I'm back to exercising too and feel really good.

    And to those wondering about T/H side effects - I'm 3 months from Taxol and in the midst of Herceptin only and have essentially no side effects now. I had mild neuropathy in fingers and feet. The fingers are all better now, the toes, balls of feet tingle funny when I first get up or if my feet get too cold or hot, but no pain and certainly nothing that would have changed my mind about Taxol had I known in advance. I have some lingering nausea but I'm 99% sure now it is from Effexor I take for hot flashes, not related to the chemo or Herceptin. I never had bone pain with Taxol though some do. Nausea was mild and easily controllable with meds. My worst BC "SE" was/is my own anxiety - far more uncomfortable than any chemo SE. I'm learning to let that fade away. Exercise helps and I'm trying to reinvigorate my meditation practice. I've never before been an anxious person - this Dx really punched a hole in my delusional invulnerability thinking. I'm having to integrate that newfound lack of trust that all will be well into my life. I'll bet I'm far from alone!

    I'm also osteopoenic and my MO suggested Zometa, an IV bisphosphonate given every 6 months. I'll see her next week and ask about Prolia - seems easier to do the shot than go back to the chemo room for infusions. Also seems to have a slightly lower risk of SE from what I am reading, though nothing is zero chance. Did anyone discuss those two options with their MO?

    I've been on Arimidex for a little over a month - can't say I feel any different so far. My weight is down slightly - a pound or two - but I attribute that to increased exercise. I eat fine now.

    Wishing everyone good health and freedom from distress of any kind!

  • lago
    lago Member Posts: 17,186
    edited June 2015

    TTfan it also depends if you can get your insurance to approve it. I had to fight for it. Pills gave me heart burn. I have LE in left arm and the other is at risk so I didn't want to do the infusion. I still go to the infusion room. They have to check my blood and calcium first. Then I get the shot.

  • TTfan
    TTfan Member Posts: 176
    edited June 2015

    Thanks lago. I have Kaiser so we'll see! I think they discussed some positivenew research on Prolia at the current ASCO meeting, so maybe my MO will come back more enthused about it.

  • Pbrain
    Pbrain Member Posts: 863
    edited June 2015

    Ashla, have you watched the PBS special "Cancer, the Emperor of all Maladies"? There are three segments and they feature Dr. Slamon in one. It is a fascinating collection of programs!

  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2015

    I read the book, twice! once before DX, and once again after! Excellent book, and I am sure I have forgotten so much of it, I will have to read it again! But I am going to check if my library has a copy to watch. Pbrain! Nice to see you, I always wonder how you are doing!

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited June 2015

    PBrain! You are back! I have been worried about you.


  • ashla
    ashla Member Posts: 1,581
    edited June 2015

    Well she's not nameless and faceless to us but we have our very own hero medical researcher...Pbrain! Hi Pbrain!

    Not in the forum regularly so I thought I had just missed your posts but from the reaction seems you've been MIA.

    Hope all is well and yes, I saw the segment with Dr Slamon on PBS. I cried. We are so fortunate.

    You researchers are at the very top of my very short list of people to consider as heroes...

    Be well...everyone.

  • Pbrain
    Pbrain Member Posts: 863
    edited June 2015

    Ah shucks, thanks. I miss you guys. I think I just needed a big, long break from thinking about breast cancer. It was hard for me to really recover emotionally after the fight was over. Doing much better now and glad to drop in and yack at you!

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited June 2015

    PBrain. Glad you feel better emotionally. I so understand. Somedays just the sight of something pink can throw me for a loop. Had a long talk with a friend yesterday about anger and the reality of the "dread" disease diagnosis. i finally have taken a couple action steps to take better care of myself emotionally. I resigned as Dean of Health and requested a transfer to Nursing Program Director. I takes me from 12-month FT administration to 10-month FT director. Will find a way to deal with the financial hit (teaching a couple classes adjunct) but my stress was greatly releived on day 1. I finish the transition in 20-days. Not that I am counting. Then I agreed to write an education plan for an acute care psychiatric facility and provide mentoring to nurses. And I LOVE it. Part-time--whenever I want to be there.

    I am reading books. Ok. Novels. Ok. Maybe not high reading levels or needing much thought. But am enjoying reading again. I cut out a new quilt. First time in a year. And I went for a walk. Very short as still SOB from the heart failure crap. But it was a walk. And I still see a therapist. Down from weekly to monthly. And may always.

    Take care of you. Your profession is demanding and you are doing so much good for the future of medicine. But you are most important.

    Much love


  • Pbrain
    Pbrain Member Posts: 863
    edited June 2015

    Thanks Susan! I'm glad to hear you have taken some heat off of yourself. Being a dean is not pretty, or so I hear from others who have done it. My Uncle just stepped down at U of AZ Medical School and he's really enjoying clinical rotations and research again. I think when you are so good at what you do, you end up going to the top even if you don't want to!

    I think for me...I don't know...I kind of struggled with how the diagnosis changed me and really even if it did at all. I still make a beeline for junk food before I'll look at chia or a kiwi. I have lost the post chemo weight, but am not thinner in any real sense. I still stay up too late, think I have forever ahead of me, still live like a youth. Burning candles and not seeing my limitations.

    But I do know I've changed. I definitely make more time for family and adventures. I do feel a need to move some of the work issues to a back burner; I can't do it all. I am so very grateful in so many new ways. I have my garden going like mad this year after two years of just scraping by and putting Miracle Grow on more weeds than plants. I feel like my old self except for a bit of loss of sensation in the balls of my feet. I'm way more compassionate towards others in poor health, where before I would have been like "get up and get moving! No laying around like a slug!" (I would have made a terrible nurse). I want to help others more and I want to be involved in things, see new places, get out and live. Yet I'm still lazy and a commitment-phobe, I don't know. I feel like I was shaken up in a paint mixer in some ways.

    And yet, late at night when I can't sleep, I think about things...like the enormous amount of trust I gave to my caregivers without so much as a question of "what are you doing?" Like how I don't know if I would have cared much if I died when I was hospitalized after my first chemo...it was weird how little I cared about life at that point. Like why did I get this and what did I do to cause it. Like why my sweet dog has to get so old and how much I miss my father who passed away with cancer in 2011.

    Yeap, definitely a psychological journey on a paint shaker ;-)

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2015

    pbrain - missed you and love the pain shaker analogy - so true.

  • ang7894
    ang7894 Member Posts: 540
    edited June 2015

    Pbrain- well said .   I can so relate to a lot of what you said.


     

  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2015
  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    pbrain,

    Beautifully put

  • ashla
    ashla Member Posts: 1,581
    edited June 2015

    Hear, hear Pbrain......


  • Pbrain
    Pbrain Member Posts: 863
    edited June 2015

    Thanks guys! I'm still up...at 2 a.m. EDT. Arghhh! I honestly think it is arimidex. This insomnia is the pits!

    So I read something recently and I want to see what others think. Currently in the US, the option, for even small tumors (like mine), is definitely a bilateral mastectomy. Even without a real increase in disease free survival, women are opting to have both breasts removed. The article I was reading said that this was a result of awareness, which has been what we are all supposed to be sending our money in for. One researcher said (and I loosely quote) "the more awareness there is, the more women realize their breasts can kill them." So they opt to just have them taken off.

    So do you guys think awareness isn't exactly what we need anymore? I'm thinking put the bucks into better imaging (since I was the dude that had a normal mammo right before my sonogram that showed a tumor)...I find it interesting that we gals can all look at our breasts and think they can kill us. But yet, I still do that every day.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2015

    pbrain - I think the focus needs to shift from awareness - anyone who is not aware of breast cancer has been living under a rock - and into research, bringing newer treatment options to more providers, foundations that help with patient financial issues, and certainly better diagnostic tools.  I am another that had a clean mammogram, and five minutes later a bad US.  I had a BMX because I correctly suspected there was unseen stuff in the other breast that would be trouble, and because I didn't trust imaging going forward - mammography failed to see a palpable 2cm mass and MRI failed to see a .5cm positive node.

  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    Pbrain, you are so right that this experience has taught us to fear our bodies. When I saw the cover photo of Kaitlyn Jenner, the FIRST thought to pop into my head was "OMG, now she has breasts and female hormones, she'll have to worry about getting BC." Sad we now have these dark thoughts looming over our heads all the time. You are right. Enough money has gone into awareness! We are all very aware. Better imaging that could catch even the sneakiest of cancers and is safe and economical enough for women to begin screening at a younger age would be incredible. 

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