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HER2 Positive-anyone 10 years out?

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  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Hi KorynH,

    Your dx is almost the same as mine.  I had bilateral mastectomies (breast ca only on the right breast) in Sept. 2008.  

    I'm not sure what ILC is in your dx? 

    My bc was IDC 50% and DCIS 50%.  I also had TCH beginning November 08 and continuing until March 09 - I did 5.5 rounds of chemo.  

    That's very interesting what you're saying here about menopause and no need to block estrogen. I wonder that my onc did not mention this.  My gyn did a test and said I had very little estrogen.  I had my ovaries removed (benign cyst in Feb. 08) and talk about instant menopause!  It is hard to tell what was menopause, in retrospect, and chemo/breast ca surgery & stress. All in the same year.  I will run this by my doc. Maybe I have a fighting chance...I sure need some hope at a time when I feel like everything has been pulled out from under me.  

    Thank you for posting, Koryn.  It is very reassuring to know that perhaps I made the right decision to not continue with the estrogen blockers.

    BTW, is that a model in your avatar or is that you? 

    Dianne - tuckertwo 

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    CMT,

    I don't read the posts here very often, but I wanted to say thank you!! for such a sweet message! I pray, too, and will pray for all of us that we stay healthy. I'm so glad you're doing well.  The power of prayer, eh? :)  

    Question for ya:  Is Taxol the same as Taxotere?  Anyone know? 

    Thanks!

    Dianne - tuckertwo

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Diane -- well thing #1 for changing to cautious optimism, for YOU, is change that Mantra you've got!  Make it: "cancer cancer cancer you are gone, gone, gone!"  If nothing else you can stop worrying so much and sleep.  Sleep is good for you.  Worry bad.

    To those who noted that first 2 - 3 year issue - thank you!  I am happy to know that I really only have to worry for the first few years (I'll be one year since they saw the calcifications in March, 1 year since biopsy showed cancer at end of April, one year since IDC diagnosis in June -- so WHICH date is my real anniversary I ask you?)  Although I do try not to dwell and have been more successful since my MX (when pathology showed all cancer gone), I will certainly heave an extra big sigh of relief when I make it past that 2 - 3 year mark.  I just need someone to tell me whether it's March, April or June? :)

    Koryn -- I too was pre-meno prior to chemo and went into chemo pause during chemo.  Onc says that since I'm 49 I am done (ovaries will NOT recover); younger women sometimes do see the return of menses.  Glad to know there is something good about menopause :)  (Although I was neither ER or PR pos).

    Dianne - Taxol and Taxotere are similar but not the same.  I had A/C dose dense x 4 every two weeks then started Taxol DD x 4 (with Herceptin once every three weeks starting then).  My onc had said she would switch me to taxotere if I had really bad SEs from taxol (which did not happen), so I guess that means there is something about Taxol she likes better. 

    Lilah

  • Gayleebug
    Gayleebug Member Posts: 12
    edited February 2010
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    And for some reason, my onc liked Taxotore better ... I am glad that they are tailoring our treatments and putting us on what they think is best for us as individuals, Lilah.

  • yellowfarmhouse
    yellowfarmhouse Member Posts: 9
    edited February 2010
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    HI,

    One of the first girls that got Hercepetin when it went off trial may of '05.  Five years NED.  Did U of washington phase 1 vaccine trial-- DNA peptide type I think,

    Wendy

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Hi Lilah,

    Thanks for responding.

    Yours is a much better mantra!! I'm trying to visualize it gone, kicked to the curb.

    I have not had any PET scans or anything other than physicals and bloodwork. The docs here do not believe in doing any tests that involve radiation unless I need them. They say the risks outweigh the benefits. I don't know what to believe. I had two CT scans and two MRI's in 2006 about the aneurym I had fixed and then two years later ended up with bc, so who knows.

    I know sleep is good. I've had a stuffy nose for the past several weeks which has not helped sleep. Plus, my doc put me on Effexor (yuck, yuck and yuck) not a good experience. I am trying to deal with anxiety and panic with no meds.  Stressing about being stressed is kinda where I'm at. Silly. 

    I made the decision today to get signed up with a personal trainer at the gym.  One thing my onc said was that exercise was proving to be as potent as chemo!  Sure a lot more fun, sore muscles and all. This is a very difficult thing to go through, especially with no support groups to go to, no family nearby, etc etc. I am thankful for the help of my sisters here, bless you all.

    Re: chemo induced menopause.  I read the article and having it induced chemically seems to help stop any lingering cancer?

    I was wondering about those of us who have had their ovaries removed for reasons other than ovarian cancer. Mine were removed in 2008 due to a benign cyst that was golf ball sized.  Having them removed either by chemo or surgery puts one in immediate menopause.  Do we get the same benefits by having less estrogen?

    Dianne -tuckertwo

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Oh yeah, Taxotere and Taxol are sister drugs so are similar. They are both taxanes, from what I read last night.

    I could only tolerate my 5.5 infusions of Taxotere by being given large amounts of cortisone, benadryl and infusing it with saline at the same time. I got chest pain and breathing problems and they would have to stop it and come up with another 'cocktail' so my body would accept it. The very last infusion, we thought we had the cocktail figured out from before....no...my body had come up with a new trick. They wanted to stop it but I said NO, use the saline and KEEP GOING!  So we pushed in the 5.5 treatments. I had to be admitted to hospital for infusions every time because of my reactions to this crap - they wanted to be ready.

    My onc said I could stop at 4.5 treatment with the Taxotere/Carboplatin but I just had to get that last one in there. 

    One thing: watch the kidney function.  Mine has dropped from these drugs.  They are hard on kidneys but the docs said nothing at the time about it.

    Blessings,

    Dianne = tuckertwo

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Dianne -- good for you for doing the exercise and hiring the trainer!  I know I should do this as well... but am still working my way up to that. 

    Lilah

  • traceyz
    traceyz Member Posts: 98
    edited February 2010
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    HEY LADIES!! IM NEW TO YOUR THREAD. BUT I SHARE MANY OF THE SAME QUESTIONS AS YOU! MY DX INFO BELOW KINDA TELLS MY STORY.

    DIANNE MY DOCS DONT REALL LIKE DOING A BUNCH OF SCANS EITHER AND I ALWAYS WONDER IF I SHOULD PUSH FOR THEM. I HAVE HAD BONE AND BRAIN SCANS. MRI AND CHEST XRAYS. BUT NOT ON A REGULAR SCHEDULE. THEY DO TAKE BLOOD AND CHECK LEVELS EVERY 3 MOS.

    LILAH, I HAVE HEARD PEOPLE COUNT FROM THE DX DATE THEN I HEAR SOME SAY THE SURGERY DATE! IDK WHAT TO BELIEVE!

    TAKE CARE SISTERS!!

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    traceyz,

    Hi trace!  Glad you found this thread.  Sorry you are a member of this 'club' :)  no one wants to be a member of this particular club, eh?  I dream of the day when there won't be a breast cancer website because there won't be any bc.

    Thanks for joining us.

    Re: the scans -- my doc has no problem with doing them if medically necessary and/or I have symptoms that need checking but does not think they should be done as routine.  There are just too many bad side effects and permanent problems from the radiation.  He says it does not improve 'our quality of life' to do these unless necessary.  I dunno. 

    Take good care,

    tuckertwo - Dianne

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    I agree with your doc Dianne, for what it's worth; why subject yourself to unnecessary radiation?  Do you think you have a good doctor?  I'm not saying you shouldn't second guess him/her... that's natural... but until now you've been content with your treatment, so why stop trusting him/her now?

    I don't know about you but since I've been diagnosed (not even a year ago) and began treatment I've had three chest x-rays (two for pre-admission testing, one when I got a fever and was admitted to ER/hospital during chemo), four MUGA scans (at least two more to come as she runs them every 3 months), an MRI and a PET Scan.  That is a LOT of radiation and/or radioactive isotopes.  After my MX the doctor said no need for further PET Scans (because the one they took before I started chemo showed no other areas of concern and the pathology on my removed breast tissue showed no cancer).  I need bone scans in the next few months (due to chemopause my doctor said I need to check bones now - not sure if those involve radiation) but am happy to leave it at blood tests and other less invasive forms of monitoring whenever possible.  I'll probably have to have one more chest x-ray (prior to exchange as no doubt I'll need, yet again, to undergo pre-admission testing) and that is just a LOT of exposure in one year.  For those who have radiation, it's even MORE. 

    Assume that the chemo worked.  Assume that the Herceptin is working/worked.  Take hope and faith (as I do) from the women who have posted their years of NED here.  I think there is no need to worry after chemo, after MX, after radiation (if you had it), etc... unless you have symptoms (be it pain or diarrhea or whatever) that last for two weeks with no break. Has anyone else heard that as a rule of thumb?  

    Of course follow up with annual mammograms (if you still, as I do, have a remaining healthy breast) or MRIs every three years (which is recommended if you have silicone implants)... and stay in touch with your doctor for routine check-ups.  Follow a healthy diet, exercise, don't smoke, don't drink too much... these are the things we can do.  Other than that, don't let cancer ruin your day :)

    Lilah

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Since we've been talking about the worry re: return of BC... I thought I'd share this in case you guys haven't seen it.

    http://www.usatoday.com/news/health/2010-02-17-aspirin17_st_N.htm

    This link will take you to an article about a recent study of aspirin and breast cancer.  They think a low dose of aspirin (which I stopped taking when I started with the surgeries but will resume taking when I'm done in May) may help prevent BC recurrence.  Click and read the link or google "breast cancer and aspirin"... for more info.  Check with your doctor of course before taking anything.

    Cheers,

    Lilah

    Edit: On further reading I found two additional pieces of info: (a) that the benefit is for hormonal BC's (those who are ER and PR positive) and that Ibuprofen and other anti-inflammatories are also beneficial (so, lord knows, I've taken PLENTY of ibuprofen :)

    Here are two more links:

    http://www.physorg.com/news185616128.html

    http://www.cancer.org/docroot/NWS/content/NWS_1_1x_More_Evidence_Aspirin_Protects_Against_Breast_Cancer.asp

  • Bold
    Bold Member Posts: 306
    edited February 2010
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    Hello again. Sorry it took me so long to respond. My in-laws have been staying with us. Thank you for your sweet comments on my hair. Its a trip for me as I had very long hair and now this very European chic do. I do not like that I can not hide behind my bangs. I always felt they covered wrinkles.LOL. Now I am exposed. Chemo was hard on my skin. As it impact connective tissue. But what the hell.

    I believe that I would consider from surgery the date of record. It is when it was removed and stopped. I would consider DX as pre treatment. sooooooooo. Go figure.

    I so concure about eating right and exercising. I am building my body back. I feel bad when I eat bad now. How about you guys. Before my body was more forgiving. I am still suffering from fatigue. UGG. Sleep would help.zzzzzzzzzzzzzzzzzzzzzz.Undecided.

    In reference to the colon and throat scope it is more routine for my age. I have battled acid reflux for years and am scared that I have something going on. Thats all just fear. I never in a million years expected B.C. so I am just hoping that will be my only battle for at least ten years or so. A girl can dream..

    I will put all of you in my prayers and close to my still beating heart.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Good luck with the scope and colon tests Bold!  Let us know how it goes.

    Colonoscopy is recommended at 50 (and then every 10 years after) for anyone -- not just cancer survivors.  Alternative to complete colonoscopy is a yearly test (which atm I can't recall the details of... but less invasive; so you can have less invasive tests once a year or invasive one once every 10 years).

    I also have acid reflux but have not had a throat scope and doubt I will; at this point, thanks to prevacid, I rarely have heartburn.

    I think with that DO you look like a very blonde Julie Andrews, Bold -- nothing wrong with that!

    Lilah

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    LILAH:  Interesting info on aspirin.  I have heard pros and cons about taking a regular small dose daily.  My thing right now is to take as little meds as possible.  Also, I would be interested in knowing who is funding the research on the aspirin?  Usually, it's a pharmaceutical company.  No bias there :) 

    The less invasive test for the colon might be the occult blood test?  That doesn't require anything except collecting a poop sample for 3 days.  If no blood detected by a lab then no colonscopy test done.  I maybe should have a colonscopy - I am 56, but I had so much else going on that I didn't want to subject my body to more tests, etc. Still don't want to :) I figure if something is going on, whatever...I can't take anymore!!!!! 

    LILAH - I know you said you can't exercise much (I think it was u, my chemo brain can't remember:)) have you thought about Che Gong (like T'ai Chi) which stretches muscles and is a good gentle workout? Maybe your doc would ok it? I have a CD that I got from the BC Cancer Agency - you can buy it online at amazon. I can give you more info if you're interested. I do the Che Gong as much as I can, esp. when I can't go outside cause it's crummy weather. There is one move you do that strengthens the immune system. Interesting stuff, involving mind/body/spirit. You basically stand in one spot and do gentle, slow moves. No running or aerobics!

    BOLD:  You do look like Julie Andrews!  I know, getting used to your face being exposed, and no hair to hide behind is strange. I'm freezing this winter with my thin hair!  It's been almost a year in March that I had chemo and since Sept. 09 when I had the last Herceptin.  Still, my hair is taking it's time growing back. It's not growing as fast and is not as thick. I hope that's temporary? Anyone know? Did your hair come back as it kinda was before?  My eyebrows are taking their time as well and are still growing back...in patches.  I look ratty :)  Eyelashes went too and are coming back except for the ones that had to be pulled out because they were growing in backwards and poking my eye. Shit. Why don't we all get together and take a cruise somewhere?  Get outta town and get as far away from doc/hospitals are possible!  Just dreamin..

    Re the thing about eating...I know what you mean.  I'm almost obsessed about what to eat and not eat.  I try to get all the veggies and fruits and green tea every day but I know women who eat crap and they are fine - never had bc.  I guess...one thing that is important to me is getting and keeping my immune system up and working and STRONG to keep out any creepo bc invaders. Had it been working right in the first place, I wouldn't have gotten the bc.  Chemo knocks the heck out of the immune system and that's the one thing we need to have in good working order. There are some good immune boosting supplements out there...plus exercise. You don't have to be a regular at the gym (I'm not) but walking a bit every day helps my mind and body.  Well, that's it for my great advice.

    I don't know if this counts as a happy 10 year + her2+ story or not - my sister in laws sister (still with me on that one? :)) had an aggressive bc about 18 years ago. They didn't know about her2+ then. She was 37 then, and is doing fine, no recurrence. She had chemo and a mastectomy, no rads. No herceptin of course. She had an implant about 8 years after her dx.  Women have had her2+ forever and many are doing very well. Everyone we know, knows someone who has beat this thing.

    Dianne - tuckertwo

  • lkc
    lkc Member Posts: 182
    edited February 2010
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    Hi ladies, Just wanted to chime in ; Dxed May 05, er pr neg,  her 2 pos, 12 POS nodes and a small area of surgical margins affected.

    Did partial R  mast, then full  R mast ( still had some unclean margins!) AC dose dense x 4 T with herceptin, 4 fields x35 Rads, doing Zometa q 6mos, Prohylactive left Mast. and bilateral reconstruction.

    6mos after rads completed.

    Last  onc visit Feb 2010 NED !!!

    ( The early days are hard, but it does get easier with time)

  • Jaimieh
    Jaimieh Member Posts: 925
    edited February 2010
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    IKC~ Thank you for coming back and giving us Hope :)  Congratulations!!!  Wishing you many, many more years :)

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    WTG IKC!  You are an inspiration :)

    Dianne -- I have to LOL -- I am LAZY that is why no exercise for me.  I do walk so at least there is that.  I'm still just 3 months PFC (and getting expanded after Right Uni MX about 2 months ago)... so I'm indulging myself a tad longer. 

    Lilah

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Hi IKC,

    Thanks for the words of hope!  So glad you are doing well.  That's awesome! 

    Lilah - you have every right to take it easy at this point. I had bilat mast as well. Saw my surgeon today (I am fine) and he said it can take 2 yrs, more or less, to heal inside from the surgery.  I still have days when I feel sore somewhere on my chest. I have not had implants. Yet.

    So you go right ahead an take it slow. But - you do have to do some type of stretching (Check with doc) so you will have full range of motion. Are you doing any gentle arm exercises?  Do you have a PT (physical therapist)? 

    I'm not familiar with what a PFC is? Do you have the implant yet, or are you getting expanders?  I'd like to hear about this because I might do implants some day. Anything you can tell me about your experience would be great.  Is it painful? I'm a wimp and HATE the thought of more pain.  I have heard about the tatoos but not sure what's up with that. You can PM me if you want.

    Dianne - tuckertwo

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Dianne - oh yes indeed doing a whole range of exercises for motion (they are easy -- perfect for the lazy me :)  My range of motion is quite good at this point, too.  The immediate implant was nice as welll.  I had had two lumpectomies prior to chemo, then chemo, then MX (my onc said: time for chemo and enough waiting around for post-surgical healing).  I decided to do the unilateral MX in the interim.  So I had my SNB prior to MX (the SNB was AWFUL and the worst pain ever; the MX was nothing, pain wise, in comparison).  Plus I woke up with a small bump so it was nice to have something there right away.  I'll have exchange and reduction/lift of the healthy remaining breast in May.  I don't have a PT, but haven't felt the need of one.  Oh and PFC means Post Final Chemo (an abbreviation I learned HERE lol so figured everyone knew it). 

    So yes at the moment I have an expander and it is bearable.  When I have fills (I'm almost done now actually, with only two more to go, we think)... it is uncomfortable for the first day or two; my boyfriend massages my shoulder blade and that helps a LOT... and so does the ibuprofen.  But, for example, I had my last fill on Monday of this week and I haven't had to take anything for pain for a few days.  The trick with the fills is small amounts at a time (which minimizes the pain). 

    I haven't had the nipples or the tattoos (which follow creation of nipples).  I have seen plenty of pictures tho and have to say they look amazing.  It's up to you of course, but I have to say the discomfort of the TEs is (so far) worth it.  If you have any other questions please feel free to PM me and I also recommend the Exchange City thread (it is huge but worth it for the info there) if you want to know more.

    Cheers,

    Lilah

  • blondie45
    blondie45 Member Posts: 82
    edited February 2010
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    CMT - I private messaged you, sorry I didn't see your question to me earlier.

  • blondie45
    blondie45 Member Posts: 82
    edited February 2010
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    Nordy - good to hear even though you and your sister were triple neg and triple positive that you are both doing well.

  • blondie45
    blondie45 Member Posts: 82
    edited February 2010
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    CMT - you made my day (even though I think I a behind on reading posts here) by saying that your nurse told you that people getting the Taxol/herceptin combination rarely recur. I am using that to get me through today, anything helps right now.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Hi ladies,

    Now I'm concerned.  I didn't have Taxol.  I had Taxotere, which is a taxane and a sister drug to Taxol.  Does anyone know the stats for no recurrence for Taxotere?  I see that CMT's nurse told her that people rarely recur with Taxol.  That's good, but are there studies saying this, or just the nurse's opinion?  I do know that generally with Taxotere they give you about 4-6 sessions but with Taxol, you get 12, more or less.  Is Taxotere more toxic, thus less treatments?  Those of us who had Taxotere are looking for something upbeat, or at least I am. Thanks!

    tuckertwo - Dianne

  • mmm5
    mmm5 Member Posts: 797
    edited February 2010
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    You are getting virtually the same results from Taxotere as Taxol.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Hi mm5,

    Thank you for answering, I feel somewhat better!  Are there studies done about lower recurrence rate with Taxol/Taxotere?  Anyone know if studies exist?

    (It would be great if we could have what chemo and how many sessions we had along with our diagnosis info that already appears, and would automatically appear after posting.  I can't figure out a way to do that, but I think for purposes of research it would be a good idea.  What do y'all think?) 

    tuckertwo -- Dianne

  • mmm5
    mmm5 Member Posts: 797
    edited February 2010
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    Tuckertwo-

    There is a studay that I have read that Orange1 sent me awhile back that looked at the effects of the Taxanes on Her2 cancer. It was without the benefit of Herceptin.

    I am hoping she will post the link or just hit the highpoints, as its been awhile and I can not remember the specifics.

    Just so you know I had TCH x 6.

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    Blah..

    I had those studies. Orange sent them to me over a year ago. I just was cleaning out my email last week and delted them!

    Hopefully she can post them again!

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    I copied this article from breastcancer.org, and now I really am concerned.  I thought the taxanes were helpful?  This is a recent ('09) article -

    http://www.breastcancer.org/treatment/chemotherapy/new_research/20090515b.jsp

     Someone, tell me it's wrong!

    Dianne - tuckertwo

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    The Taxanes a very effective for Her2+ BC.

    There is question that Taxanes might be over kill for ER+ alone BC's. Thats what the article is refering too. Your good!!!!