TRIPLE POSITIVE GROUP

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  • lago
    lago Member Posts: 17,186
    edited October 2011
    Actually 3 weeks ago. I got my stitches out yesterday. Tongue outGeewhiz there is a lot of old info out there on her2+. Herceptin hasn't be standard care for early breast cancer that long. I think it's only been standard care for metastatic for 10 years, maybe less. They really don't have stats yet but I hear since herceptin  your stats are similar to someone that doesn't have her2+ status. Doesn't mean it will work but it seems to be doing a great job.
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2011

    Oh joy:  Radiation SE's that I guess I didn't realize is issues with the eyes.  I had my annual eye exam today and was told that I have macro (the dry kind) and it wasn't there last year.  I was told it is a side effect of radiation.  If that is the case, why don't they protect our eyes during treatments?  Hoping the vitamins they are suggesting will keep it at bay!  Geez!!!!

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  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    Arlene - Seriously?
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2011

    Omaz:  That is what the eye doctor told me.  The macro is typically from smoking, exposure to sun, etc.  I've never smoked in my life and have a healthy lifestyle and eat all the stuff they now tell me to eat.  Wondering if I should get a second opinion?

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  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    Arlene - Did he say it was macular degeneration?  I don't know much about it but it doesn't hurt to get another opinion.  Really sucks if it is from radiation.  I always wondered about the scatter from the machine.  The one I had was fairly new but well used so probably had more scatter than the newer ones.
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2011

    Omaz:  The doctor did say macular degeneration.  My machine was new too but they had a lot of problems with it and it was constantly going done.  I always kept my eyes closed and who knows this could be not at all related to radiation but odd that I didn't have it last year and poof here it is months after radiation.  Thanks for listening.  I'm really down about this!!!

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2011

    What vitamins are they recommending Arlene?

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2011

    Lutein seems to be the most highly used but there is a special vision vitamin that I'll pick up today.  Lots of kale is recommended.  Hoping it helps.  One of those things that there is no cure for yet.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2011

    ArleneA - spinach too!  Sorry for the news though.

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  • NancyJill
    NancyJill Member Posts: 218
    edited October 2011
    Don't put too much stock in one limited study, geewhiz! Overall stage IIIa is 51 to 56% survival, and having more pluses means more ways to treat!
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  • ccjj
    ccjj Member Posts: 128
    edited October 2011
    Fluffqueen01.. my exchange isn't for a couple of months yet, but I also am interested in having some fat removed from armpit area on right side when he does it. Its lope sided looking. Haven't discussed it yet with him. I think if he can do it and its not too expensive I will go for it also. That would be considered considered cosmetic at this point, right? I'm guessing my insurance co. wont be interested in my fat removal issues. We have gone this far, though so maybe worth it.
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  • meglove
    meglove Member Posts: 267
    edited November 2011

    I saw my onc last Thurs. He said Tamoxifen wont stop period by itself. I did not have my period yet because of the chemo. He said most women will get their period back within 5 years. Can chemopause be that long? I am thinking about to have a complete hys, like some sisters discussed earlier. But will consult with another onc that I will see at a cancer center this month. It seems I could not find a Gyn that I can trust. It seems hard to have something taken out from inside than from outside. Maybe that is just me. I have heard people recovery well from complete hyst.

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  • nmoss1000
    nmoss1000 Member Posts: 357
    edited November 2011

    Hi ladies glad someone brought then period thing up. Just curious if I should be alarmed. I am PFC 5 months, I had my FSH levels tested 2months ago and it was 135, which meant I was post meno from chemo. I am 42 and was still menstruating until TX #2. I have been experiencing extreme dryness in the nether region and had been using replens. I have not started my AI of aromisin yet. Supposed to start Monday. All of a sudden last week, I got a horrible yeast infection out of the blue and really bad symptoms. I bought an OTC monistat and that helped a it but I am now spotting. I have had maybe 4 minor cramps in the past few weeks but nothing massive.. I also have had uterine fribroids for years. Should I be concerned. I have an OB appt this Friday. Does this sound like the return of my cycle or something else? Anyone else get their periods back after being declared post menopause? Thanks all

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    nmoss - my onc said he had a women that was around 50 when she did chemo, her periods stopped for 4 years and then came back at 55!  So yeah, I think they can go away for a while and come back.
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  • nmoss1000
    nmoss1000 Member Posts: 357
    edited November 2011

    Thank Omaz, frustrating but scary.

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  • lago
    lago Member Posts: 17,186
    edited November 2011
    Omaz that is not going to happen to me. Granted I finished chemo 2 weeks before my 50th. I'm enjoying no periods and no monthy mood swings. Seriously it is rare the closer one is to menopausal age that it would come back. My onc test my levels for 4/5  months. The one time I got my report it stated "Estradiol value <10.0. Normal male: Tongue outPrepubertal < 10 pg/mL. I had been on Anastrozole for almost 3 months at that point. I guess I'm a normal male.
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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    lago - lol!  I don't think my periods will be coming back either and when I go at the end of the month I am going to ask about switching to an AI.  They will probably want me to wait a little longer but heck, after all we have been through I'll take the 20% advantage from the AI over the tam if I tolerate the AI OK. 
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  • lago
    lago Member Posts: 17,186
    edited November 2011

    My onc said mine wouldn't come back but she had info. I was already peri (shorter periods) my mom started menopause at 51 and my sister finished at 53. I am also a former smoker (quit over 6 years ago). Smokers can get menopause a few years earlier. So that's why she went straight for the AIs for me.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Arlene: I'm starting radiation in November. Any tips on preventing the eye problems? I'm already going half blind from Taxotere, which has trashed my near vision and leaves me squinting all the time for distance.

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  • lago
    lago Member Posts: 17,186
    edited November 2011
    Windlass my eyes did improve 4-6 weeks PFC. I went to see my ophthalmologist after chemo because I kept getting these blood vessel bursting in my left eye on chemo. They checked my eyes at the time and the tech said I needed glasses for distance vision. I told my ophthalmologist I felt this was from chemo and wanted to wait. Sure enough came back about a month or so later and my eyesight was fine.
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  • NancyJill
    NancyJill Member Posts: 218
    edited November 2011

    Menstrual irregularity is regular for us. Glad to hear that so many things, even eyesight, clear up. I'm tempted to shave my head smooth, but maybe I should let what fuzz--1/4 inch-- I have left stay and that may make my hair thicker sooner? I'm off drugs now that usually stop hair growth....it's just uncomfortable to have it so short, but I guess it will be itchy whenever it starts to grow back, anyway, right? 

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2011

    Ladies:  I'm wondering if some of my problems aren't from the taxotere.  We'll see what the test shows.  What I'm noticing is exactly what you mentioned Lago and it was really bad during chemo and much better now but definitely not 100%.  However, the pictures of my eyes weren't very encouraging.  I'm going to look for some trials.

    Windlass - if I had to do this again, I'd make sure they put something over my eyes to protect from any scattering.  Don't get too worried because I think this is very rare.  Leave it to me to deal with the rare.

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011
    ArleneA I certainly wonder about Tax being the culprit as well. I had laser surgery to correct my vision to 20/20 years ago and during chemo I noticed a gradual but dramatic change in my vision. I kept complaining to my husband that the tv was blurry for example and reading was more difficult. I also work in the evening and found that driving was noticeably more difficult because my vision had worsened. After chemo my vision returned to normal. As I recall it was back to normal  by the time I started Rads so I don't think Rads affected my vision. I hope it improves for you and that you get some answers...
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Ok...enought waiting...I GOT THE TWINS TODAY....WAHOO! He put in 425s because try as he might he couldnt wedge in the 450s. Lol. Gonna tak a pain pill in 30 minutes and take a nap but thought i would catch up first!

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  • lago
    lago Member Posts: 17,186
    edited November 2011

    Yay the fluff queen is finally fluffy!

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  • Awnooo
    Awnooo Member Posts: 85
    edited November 2011

    Hi, im 27 and just got diagnosed and started my 1st chemo round, dont know anybody with breast cancer and hoping to get information through you ladies, thanks!

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  • slousha
    slousha Member Posts: 312
    edited November 2011

    Hi Awnooo,

    Only to say you hello! I'm 3+. from 2009 and I'm doing well. You will find a lot of information about  at BCO and from 3+sisters!

    Best wishes

    Usha

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    Awnoo - So sorry that you were diagnosed.  You are so young!  This is a great place to come and talk.  What chemo are you having?
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2011

    Hooray Fluff.  Hope you are doing well and pain minimal!

    Awwnoo.  so sorry to welcome you here but come here often and ask away as there are a lot of great women here with tons of information.  Too bad you didn't make it to the cold cap blog before you started.

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  • Awnooo
    Awnooo Member Posts: 85
    edited November 2011

    Thank you Slousha!

    Omaz, I am having TCH, I already had the first round and it was pretty tough :(

    I had a vibrating migraine for 4 days with blurred vision, throbbing pain in my liver and kidney areas, rash on my hands, and the other usual... (tremors, tongue fungal infection, urinary infection, etc). I wonder if any other TCH ladies felt those effects?

    Thanks for asking! and stay strong :)

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