TRIPLE POSITIVE GROUP

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2012

    Crosspost:  This is TONLEE!

    So I went to get the hard copy of my latest MUGA.

    Seems the person I talked to on the phone must have read it wrong (which was easy to do because they listed all my ejection fraction #s for the last 5 MUGAs.)

    So I'm up to 54%..."minimally increased" but I'LL TAKE IT!  (It only took an ENTIRE YEAR to come up 5-6 points...heh)

    I'm just glad to be up above 50....I hope this is a trend....even though I was told last week my heart will "likely" not improve (much).

    Don't lose hope ladies.  I don't care what the doc says....my heart is getting better!  I insist on it!!

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2012

    On a side note.  I went today for my mammo.

    I didn't think it bothered me.  Last year I was in and out, no big deal.

    But on a subconscious level it musta bothered me because I SHOWED UP A WEEK EARLY!  lol  They went ahead and did it, but I wasn't actually scheduled until the 18th!  You know, now that I think about it, I'm pretty sure I did the same thing last year...except they couldn't get me in.....

    They must think I'm an airhead.

    Whatevs.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2012

    TonLee, so glad to hear Your EF bumped up again! Yay! and showing up early for your mammo is so fruedian! LOL

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  • ashla
    ashla Member Posts: 1,581
    edited October 2012

    Great news Ton Lee! Can't wait for you to tell them ' I told you so' one day. You go girl!

    Anyone other than Lago doing the ACS Strides walk?

    Just got a call from my radiation oncology team and they've invited all their BC patients to join them if only or a short part of the walk. Think I might actually enjoy doing it with them.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2012

    Well, I've been cut loose. I don't see my onc again til January. 3 months! Yay. I do go in for labs in 6 weeks though. But even that is an improvement from every week. Now I just have to decide if I want to keep my port in or not. My choice. Leaning on just keeping it for now, doesn't bother me at all, can't see the port, just the incision scar. Oh, well, that's one decision I can wait and think about. Much love to all.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited October 2012

    Fantastic news about your EF Tonlee. So pleased for you.

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited October 2012

    kayb,  Re: your post to Pearlady== Once we are done with herceptin do they test us to see our her2 status?  How do they know if the herceptin cured the her2? 

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  • ashla
    ashla Member Posts: 1,581
    edited October 2012

    Moon and Kayb...happy? Sad?

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  • ashla
    ashla Member Posts: 1,581
    edited October 2012

    Eileenohio...

    This one I can answer. They don't know.

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited October 2012

    Thanks Ashla,  I was hoping !!!

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2012

    Thanks everyone!  I'm pretty glad for those few points..lol.

    My husband's birthday was yesterday.  To celebrate I made a sinful chocolate cake with REAL buttercream frosting.  I only do it a couple times a year (Christmas and his birthday) because, well duh....but for two days all I've eaten is CAKE and FROSTING.  For me, sugar is so addicting.  It will take me two weeks to break the craving.  But he's worth it!

    I feel like crapola tho.  It's kind of like staying up all night or consuming alcohol.  My body just can't do it anymore.  There was a time, back in the day, lol, I'd eat cake like this and go run 10 miles.....now, it just makes me too sick to move.  Ugh.

    Yeah, I know you care.  But just thought I'd share :)

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  • lago
    lago Member Posts: 17,186
    edited October 2012

    TonLee if anyone is going to improve their heart it would have to be you. Congrats… and keep it going!

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2012

    Thanks Lago :)

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  • rozem
    rozem Member Posts: 1,375
    edited October 2012

    hi ladies

    just looking for some advice for a friend (who also went through BC last yr) she has been taking 4000iud's of Vit D for at least 6 months now and her D levels have not improved at all...is there something else she can be doing to help absorption? she is taking the drops

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited October 2012

    rozem,  When my vitamin D level was low my MO gave me a prescription for a high dose of VitD. I had to take one pill a week for 8 weeks,now I take 2000  IU of Vit D3. Sorry I do not remember  what the script bottle said,when I was done I tossed the empty bottle.

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  • camillegal
    camillegal Member Posts: 16,882
    edited October 2012

    OK I just caught up that does not mean I remember snything that I read---Wait some asked about Chemo-brain weel I still totally have it and I did read it can go up to 20 yrs. so I figure 1st chemo-brain right into dementia AND no one even notices it but me cuz that's the kind of gal I've always been. I notice dyslexia comes back and believe it or not I was able to read something once and I understood it--Now I can read it over and over and forget that I'm reading it over and over til sometells me. It's not that I forget everything just fog is heavy. and some days are worse tha others.

    And welcom Pbrain (like that name) These ladies are wonderfulky knowledgeable (again not me) but all of them are and very caring---I did live alone during all my stuff and did all right my girls would stay with me at least 2 nights after my operations but I liked being alone and still do actuallly so it might no be so bad, and u can keep very busy on here too day and nite so that might help u too. And everyone takes the DX differently, I bet every single one of us have a totally different story and they are al normal--Personally I just said that ruins my chances of being a pole dancer and it did--LOL So like I said everyone is different. And once everything gets going it's like robotic u just do it.

    Now moon u said u were done---YYYAAAYYY (I think it was moon) and someone else Good fo the both of u. OK I'm done.

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  • ashla
    ashla Member Posts: 1,581
    edited October 2012

    Camille...you're conning us about everything. Bet you're getting ready for the midnight show at the Naughtie Nightly right now!

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  • lago
    lago Member Posts: 17,186
    edited October 2012
    Rozem there area people that have a rare condition where they don't absorb vitamin D or something like that. She might consider seeing an endocrinologist. I will see my friend that has this condition on Sunday. Remind me to ask her about it. I believe it was an endocrinologist who diagnosed her.
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  • rozem
    rozem Member Posts: 1,375
    edited October 2012
    lago and eileen thanks so much for that info, i already forwarded it to her.  She has a MO appt in a week so i told her to ask him since her GP just said try the pills instead of the drops (so not a good enough answer and i agree)
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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2012

    Rozem, I believe vitamin D is a fat soluble one. Meaning absorbtion is better if taken with something that has fat in it, so taking it with a meal is usually what they recommend, or within a half hour of eating something like a piece of cheese, etc.

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  • shore1
    shore1 Member Posts: 739
    edited October 2012

    About the D3, would you add up all the vitamin D that's in calcium and multi vitamin supplements too? Or is it not all absorbed the same as a separate D3 vitamin would be?

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2012

    Ashla, kind of happy I am done, kind of scared, and a bit at a loss as to what now. Especially since I was expecting to be on Herceptin til Feb! LOL. Kind of a shock to be done. I know I am glad I can start chemo rehab again, will need another MUGA or echo in two months, see my card then too. Don't know if I can work a full time job, don't know if I can even FIND one. oh well, it will be what it is! LOL

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  • camillegal
    camillegal Member Posts: 16,882
    edited October 2012

    Ashla--Hahaha Yes I am a conwoman LOL I'm just a woman that doesn't get that concerned--but I'll tell u really I'm more concerned about my heart issues now then I ever was about cancer--and I'm getting myself upset over this and I shouldn't they're on top of things and just on some more meds to help???

    And Sol I was only Kidding (silly me) it will only last maybe a week or two (Is that better) :)

    Moon I know u'r glad to be done but there is a little loss there--after going every week (for me) for 3 yrs I felt like I was being abandoned. And I told my dr. that all she said was Oh u'r not getting rid of me u'r going to be seeing a lot of me. Then I got unhappy all over again. LOL So Drs. are still around and now more but Sol again chemo-brain tops a week or 2. Now sleep well all Like I'm tying to but I can't hahaha I've got a solution

     How's that???

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  • lago
    lago Member Posts: 17,186
    edited October 2012

    Yes shore you do add all the D/Calcium in your vitamins too.

    --------------------------------------------------------------------
    FYI: If you have questions this might be a good place to ask

    There is a Q &A today with *Dr. Cobleigh MD (onc) and Andrea Madrigrano MD (BS) from Rush University Medical Center

    Read about the event and bios here: linky

    Live Blog: Breast Cancer Online Chat

    Date: Friday October 12, 2012
    Start Time: 12:00PM CDT

    When you are ready to watch the event you can click here.
    Alternatively, you can copy and paste the following link into your browser:

    http://www.coveritlive.com/index2.php/option=com_altcaster/task=viewaltcast/altcast_code=d233a84402

    *Known for  her work on HER2+

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2012

    Camil,

    That's my favorite way to swallow bad news;)

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  • pearlady
    pearlady Member Posts: 882
    edited October 2012

    Thanks Kayb.  I did read that it is possible for her2nu status to change after herceptin, but very uncommon in bone mets, which is my situation.  I've read it's more likely to change with soft tissue involvement.  My onc thinks I still have the her2nu, but wants me to get it checked.  My question is if there is no her2nu showing in the blood test, I would think that I should still be taking the herceptin.  My concern is that if those cells are not showing now, while under treatment, perhaps without the treatment they will become more aggressive.  So it's like you said, it seems that perhaps that part of the disease may have been cured, but without any treatment, who knows.  My onc did say that if the cells had become resistant to herceptin, the her2nu would still show and be more aggressive.  At this point, I'm a bit confused, but hopefully the blood test will bring a bit more clarity.  Thank you for your post.

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  • camillegal
    camillegal Member Posts: 16,882
    edited October 2012

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2012

    My CAT scan came back - benign hemangioma in the liver - OMG - so happy and relieved!!!!

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  • ang7894
    ang7894 Member Posts: 540
    edited October 2012

    Yay Dance!!!

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  • lago
    lago Member Posts: 17,186
    edited October 2012

    Like I said dance… don't worry until they say you have something to worry about. Now go DANCE!

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