TRIPLE POSITIVE GROUP

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  • mom2threeboys
    mom2threeboys Member Posts: 100
    edited June 2015

    Great news, cello...big congrats!

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  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    Running,

    congrats on hitting the finish line!!!

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  • ang7894
    ang7894 Member Posts: 540
    edited June 2015

    Yay running!!   ThumbsUp

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  • Mommato3
    Mommato3 Member Posts: 633
    edited June 2015

    Congrats runningcello!

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  • TTfan
    TTfan Member Posts: 176
    edited June 2015

    Hooray running cello!!!!!! How will/did you celebrate?

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  • runningcello
    runningcello Member Posts: 110
    edited June 2015

    thank you all so much!! :) my husband took me out for a lovely dinner & surprised me with some edible arrangements & flowers. It was truly wonderful! I can't wait for you all to cross the finish line

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

    Congrats, runningcello! I hope to join you in September.

    Because I'm taking an AI, I had a baseline dexascan, which revealed that I'm already osteopenic. I asked MO whether I needed any meds to deal with that. She said no; she expected that my calcium supplements would keep me stable. I've been taking the generic version of Caltrate (Calcium 600 + D). Today, MO mentioned that as long as I took it twice a day (?), my bones shouldn't get worse. This is the first I've heard about taking it twice a day (I've been taking it once a day). For other osteopenic ladies, do you take 1200 mg of calcium a day?

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

    My MO had me taking it 2X a day. I too was osteopenic before chemo. After 2 years my spine was just over the border to osteoporosis. My rheumatologist reduced my calcium by 1/2 and told me to get the other half from diet.

    I powerwalked and strength trained too but chemo pause/ chemo/ AIs/ small frame and family history doomed me to eventually get osteoperosis. Biggest drop was right after chemo.

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited July 2015

    done chemo, should I ask for dexiscan ? Last one in Aug of 2014. Or is it a given? I also have osteopenia.

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

    Thanks, lago, for your insights. I like my MO, but she talks really fast and I sometimes don't digest what she is saying.

    Jerseygirl, I got a dexascan because I'd never had one before. You already have a baseline dexascan on file. My MO says I'll get one every two years to see whether the osteopenia has gotten worse. Maybe, you're good until 2016???

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

    My MO did a dexta scan on me every year because of being on the AI (and I was osteopenic before chemo). Now that I have osteoporosis and it's being treated she does it 2 years. Some insurances will not pay for the yearly. It depends on how your MO writes it up.

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  • runningcello
    runningcello Member Posts: 110
    edited July 2015

    I have a very real problem. I can't actually believe I could ever be cured of cancer so I am constantly diagnosing myself with things. I thought I had a recurrence because I was having back pain and I read a woman with back pain have metastases. Did a bone scan and it came back clear. Now I think I have ovarian cancer because of the back pain, constipation, & some bloating. I can't just think hey maybe it's because of adjusting to a new mattress. No. Everything is cancer to me and I get terrified because sometimes you don't know until it's late

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

    Runningcello. It IS a problem, and I think it is one that many of us share, if we are honest. My friend here on the boards, SlowDeepbreaths calls it going to crazy town, and she tells some hilarious stories about it. Right now, I have myself convinced that I must be in the middle of giving myself tongue cancer, because part of my efforts to stop smoking, I took up lollipop licking. I found these great ones on line, Linda's gourmet follies, they have raspberry lemonade, cafe mocha, cinnamonbun, bubblegum, and my favorite, mango chile. Oh my god. So good. But my tongue is getting quite the workout, I think it's tired and a little rigged around the edges. But. Having the kind of brain I do, and an addictive personality, I can't have just one! There are days when my tongue doesn't get a break. And then smoking on top of it, I imagine all the little tobacco fumes getting into the little scratches, and making changes for the worse to my mouth. I even already worried about how they would give radiation to my tongue if I did, and if I did, how all the enjoyment I get out of food would be gone. Sometimes I think and or worry about what my absence would look like: my life and people without me in it. Yeah, crzytown for sure.

    Don't even get me started on wondering what this bump is on my skull. Onc said "quit wearing earrings". What I didn't tell him, is that i hardly ever do, only when i go to see him and the others, because the have made notes about my appearance: Kathe wasn't wearing her wig" "she wore a hat today', etc. My primary care doc, whom i respect tremendously (he treats the whole person, and listens carefully , and I nevr feel rushed altho he has a very busy practice) put his finger right on the spot, and told me it was my occipital nerve, sometimes they just get that way.. So- hopefully, no skull mets for me anytime soon...

    my friend Beppy has a hilarious blog about stuff like this, pm me if you would like to read it, but I think I am just now going to start a new thread about it. Will any one from here come and see it? Absolutely normal...

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

    I don't know WHY my computer always changes it to 'Follies', when I want to say 'Lollies' , contributing to the fact that I think that it is a subliminal message from my 'puter, telling me that they COULD cause tongue cancer. My Folly. See how bad I can get? Hug

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

    I went to crazytown long before my bc dx. The funny part was the illness I was convinced I had was heart problems (due to bizarre palpitations during menopause). Besides my regular doctors and trips to the ER, I also spent too much time visiting Dr. GOOGLE. So just as menopause came to an end and the awful palpitations stopped, I get bc, which I wasn't even concerned about. I think this has helped me to spend less time in crazytown now cause I figure I can't waste time worrying about every ache and pain. Its the stuff I can't feel that will sneak up and get me.


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  • runningcello
    runningcello Member Posts: 110
    edited July 2015

    I loved the life of ignorance pre diagnosis. It's really a shame that I don't think life will ever go back to normal in terms f fearing cancer all the time. But luckily I have a life to fear :)

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  • Suladog
    Suladog Member Posts: 952
    edited July 2015

    I bought a couple of lots in crazy town and built a mac mansion there back in 1990. I was convinced actual parts of my body didn't really belong there and were growths. Because I'm small I could feel all sorts of things under the skin which were actually body parts. I only visit my crazy town properties occasionally, but I did stay there for a while, earlier this year when I was diagnosed again. I think I left a suitcase there

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  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2015

    Elaine, I take Calcium twice a day too. In the morning it's in my multi vitamin and then 600 mgs (+D3) in the evening. My Dexa showed normal but she recommended the extra Calcium plus exercise to keep my bones strong. I'm pretty sure I don't get another Dexa for two years.

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

    Thanks, Mommato3! I've started taking it twice a day as well. I've also been taking my son to the pool every day. Hopefully, I won't progress.

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

    Runningcello this is not uncommon. I recommend you get some counseling. BTW are you on an AI or Tamoxifen. I know Exemestane has a SE of anxiety. Both Exemestane and Anastrozole have SE of depression. Not as common but this could be part of the issue.

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited July 2015

    saw the PA of my MO and we had a nice chat about all the stuff left hanging with nurse. She told me I could have the opposite if hot flashes which I do, very normal she said. Also the swelling and rashes from the arimadex and hercepton, really got some good explanations which I think was very good for me and if they were only forthcoming I think we would all be better off. Have a great fourth

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  • runningcello
    runningcello Member Posts: 110
    edited July 2015

    I'm taking tamoxifen but I don't experience anxiety ... I think I just have a fear that it'll come back & I want to be proactive. Also, thank you all for your funny stories of visiting crazy town :)

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  • Kthielen
    Kthielen Member Posts: 194
    edited July 2015

    stephmoen, I am on Tamoxifen, although I am having a total hysterectomy in Sept then will switch to an AI. These meds are just for the hormone positive part of our cancer....Her2+ is just treated with the a herceptin and Perjeta!

    Kathy

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited July 2015

    I am leaning towards oopherectomy I just want to do everything possible and I am lucky enough to have 2 beautiful kids..I am now on Exeffor and Xanax it helps I have stopped the chronic googling obsessing and crying when I look at my children trying to live in the moment it's so hard but I know everything happens for a reason this has made me realize how precious everyday life truly is

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

    Runningcello I would still seek counseling. So many women are on anxiety meds from the start of diagnosis so they don't experience the "what ifs." Speaking of "what ifs" here are a few of my infamous speeches:

    seat belt speech:
    You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.

    shit happens speech:
    Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.

    What If
    Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your MO's job to worry about those cancer "What Ifs"

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

    lago - you added a third speech, I had the seatbelt and shit happens ones memorized, but now a new what if speech - excellent!  I like it!

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

    I also approve!

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  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2015

    Steph, I finally decided to do an ooph. It's scheduled for Sept 25th. Initially I didn't want to do anything drastic but there's no way I want to do Zoladex shots every 28 days for the next 5-10 years until I hit menopause. What would be the likelihood that they'll change their minds about OS + Tamox/AI?? My GYN had suggested removing everything. I decided that wasn't for me since all this is preventative. My luck, I'd hav all kinds of problems if I removed my uterus.

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

    I've had the "what if" out there for a while. Guess I never posted it here. Glad you guys like it.

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  • JeniferE
    JeniferE Member Posts: 130
    edited July 2015

    Thanks for sharing the speeches, lago

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