TRIPLE POSITIVE GROUP
Comments
-
Goutlaw--I'm sorry I'm the first one to see u'r post--be patient someone will come along and really give u good advice. All I know right now everything sounds like blah blah blah blah with no real answers, but then for me it still is blah blah--but everyone on here is so tuned into what is new and what to do, u'll see.
0 -
When they do surgery and check lymph nodes, do all the nodes light up if cancer is found or just in level one etc....BC IM scared that chemo killed level one nodes and not level two...I want to make sure they got it all out the nodes. Also do they do any tests after surgery to make sure they got it all out...like all out breast and nodes?...man IM too young to die and nervous
0 -
Goutlaw from my experience only I got all infected nodes out at surgery on both sides and had chemo first to get things strted. Then chemo after, then rads which should do the trick IF there is anything hanging around--and they pretty much know how it's going thru the whole process--Don't think about dieing, think about healing, u'r team of Drs. will take care of u in all ways from pain to anxiety and tell them u'r anxious and scared--they should help u with all of that.Almost everyone freaks out so it's so normal, just don't go to the dark places stay thinking they'll take care of everything--u'll feel better in the long run, I know it's difficult, but it's so true. Really.(((HUGS)))
0 -
Goutlaw I had surgery first. The MRI said my tumor was 6.5cm. The Mammo indicated about 7cm. The tumor was about 6.5cm but only 5.5cm was invasive. That is what my staging is based on. Radiation will kill any left over strays in the nodes. Even if they find your sentinal node(s) are invaded they don't take out all the nodes anymore. They found that treating with radiation works just as well and lowers your risk of LE. When I had my nodes removed they didn't do it that way. Also it was standard care to take out level I nodes with tumors over 5cm. Sucks because my nodes were clear but I have slight LE in the 10 nodes side.
As far as staging you. You will get a clinical staging. I believe this means they will base the tumor size on the MRI results. There are many women that have had chemo first. Really it doesn't matter what stage you are… what matters is the treatment works! Don't get too hung up on size or missed nodes. They bring out big guns for us HER2+ gals. Also being hormone positive we have all this hormone therapy that we do for several years as extra insurance.
♥
0 -
See Goutlaw I told u.
0 -
Looks like we have a new neo adjuvant regimen in the very near pipeline...Yippee!
Sorry about link..I'll try later..
FDA-grhttp://www.marketwatch.com/story/fda-grants-genentechs-perjeta-regimen-priority-review-for-use-before-surgery-in-her2-positive-early-stage-breast-cancer-2013-07-02http://www.marketwatch.com/story/fda-grants-genentechs-perjeta-regimen-priority-review-for-use-before-surgery-in-her2-positive-early-stage-breast-cancer-2013-07-02ants-genentechs-perjeta-regimen-priority-FDA Grants Genentech's Perjeta Regimen Priority Review for Use Before Surgery in HER2-Positive Early Stage Breast Cancer
Application follows proposed new FDA pathway designed to help bring promising medicines to people with earlier stages of breast cancer fasterYreview-for-use-before-surgery-in-her2-positive-early-stage-breast-cancer-2013-07-020 -
Ashla u are another amazing researcher.
0 -
Ashla the link won't work. You need to shorten the link with www.shorturl.com I know they think they fixed that but sometimes the link is still too long
0 -
Camille my friend I'm not an amazing researcher at all. I just have google alerts, time and like to read all kinds of stuff.
0 -
Ashla u don't give u'r self enough credit. Believe me.
0 -
No really Camille...the news comes to me! But thank you for your vote of confidence. It means alot especially coming from YOU!
0 -
Thanks for that link, Ashla (aka incredible researcher
- the second one worked
Incredible increase in PCR with Perjeta regimen!0 -
I love Google alerts. I even have them set for my daughters' names so when they are mentioned in volleyball articles online I get to see them. How embarassing is that? At least it's not in the police reports, right?
0 -
Reducing risk of recurrence..
http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/survivor_care/reducing_recurrence.html0 -
Vballmom--I can barely maneuver the computer, let alone figuring out google--and when I do find something u'd think I found gold I have to tell everyone like a kid and it's been 3 yrs. since I've started using a comouter and not to it's full extent tht's for sure.
0 -
Goutlaw, Lago is so right and so wise. Do your best not to jump to any big conclusions based on stage because the doctors do bring out the big guns with us HER2 patients. I was stage Ia, the best you can be with invasive breast cancer, and they beat the sh!t out of me. So in reality, we are all equal under the flag of being Her2 positive...
Ashla, the FDA's priority review is rough because when they ask for supplemental data, you have to provide it fast. But I know some of the team members working on the new claim and I bet they can do it. I wish we all could go back in and get a little perjeta just for an additional boost :-)
0 -
Vballmom...my son is dating a girl who was ranked 15th in the nation in volleyball a few years ago. Started on scholarship at Purdue and finished at Ohio University. He is 6'5 and has always dated these teeny, tiny girls. Told him was ruining the gene pool. A year ago, he met Mandy, who went to his same high school, but is younger, and it has been all romance and roses. AND, she is 6'2". We love her.
Also, my friend that had gall bladder surgery thought she was just going to have her laproscopic surgery to remove it and just bounce right back to work. She said she didn't move off the couch for four days,lol, and the woman is a nurse practitioner who knows these things.
Pbrain, are you a candidate for Perjeta? Seriously, if you work for Roche here in Indianapolis, I would think you could be a poster girl for them. And it should be all free!!!
I also wanted to tell you that when you mentioned Community and MD Anderson the other day, i started laughing. I just had the conversation with my Onc as to why the community South Hospital is not on the commercials, just north and east. He said it is all politics. They are building a big cancer center down here now, and Md anderson won't count it until the radiation center is on site, which won't be until next year.
However...and this is the best....he looked at me in his very proper Indian accent and said "Why do I need MD Anderson? i was trained at nci, far better than anything MD Anderson has." He is usually such a humble guy that it really threw me and gave me the giggles. He just grinned.
There have been a few of the "MD Anderson" docs in and out of his office now, and they apparently are at several of the hospitals. They seem very, very young.
0 -
Haven’t checked this in awhile.
Pbrain, hilarious about the liver failure or whatever. I don’t even know what the fulminate part means. However I have had a LOT of nosebleeds since starting treatment – I can’t say that’s one I’ve spent much time worrying about, though they’re annoying. I guess I’ve had them a lot before. Sheesh, should I be worried? I figured it was from allergies, or from too much nasal spray from allergies.
DX at 32, it blows to get that diagnosis at any age but it is extra awful to get it when you’re 32.
Cami, so 72% get chemo? That sounds high to me.
Gratitude, thanks for posting. That was WAY over my head. Can someone translate please???
Pbrain, that sucks about your ejection fraction. I’m sorry to hear that.
Goutlaw, so you want a BMX and they want to give you a uni-lump? Survival rates are pretty much the same, in fact slightly higher with lumps, oddly. However I personally think that the slight edge of lumps over mx is b/c of a self-selecting factor, like maybe women who opts for an mx rather than a lump at the same stage might have some features that make them slightly more likely to have a recurrence. Typically when I have read of women having multiple tumors it seems like women have MXes. I do know someone who has multiple lumps and was small breasted but insisted on a lump + rads. That was years ago and no recurrence. Doubt she was her2+ though b/c she didn’t do chemo.
No tests really to see if they got it all, but they might do a CT scan or a PET scan. When the nodes light up, that just indicates the path of travel, doesn’t mean there is any cancer there. 4 of my nodes lit up and I had 0 cancer in the 4 that lit up and were therefore removed. There is a small chance that the nodes that didn’t light up had cancer but hopefully a) they didn’t and b) the chemo killed anything if so.
Cami you are so cute.
Great news about the perjeta!! I hope I’m getting it! (I’m on the aphinity trial but think I’m probably getting the placebo….)
Ashla thanks for all the interesting and relevant research posts! Encouraging stuff.
0 -
Breast cancer rIsk reduction diet??
http://www.medpagetoday.com/TheGuptaGuide/Oncology/402470 -
cypher I had nose bleeds when I was doing both chemo/herceptin. Seemed to get better when I was only doing Herceptin.
Goutlaw BMX/MX its your choice. I too wanted to do the BMX from the start. My though was if they couldn't find my tumor in my dense breast tissue till it was 6.5cm, even after a scare 4 years prior in the same spot I didn't trust the technology. My tumor was in the posterior region. BUT my BS also felt there was no need to take out healthy tissue. He said lets wait till we do an MRI. Ended up there was 4 suspicious areas, one he was really concerned about. Said I would have to have all spots biopsied every year. Then he recommended the BMX. That one suspicious spot ended up being LCIS (precancer). LCIS increases your risk of breast cancer. While getting a BMX doesn't give my a 100% guarantee that I won't develop breast cancer in my breast area it puts the percentage in the single digits… a huge reduction in risk
But I would way all the positives and negative of doing a BMX. If you do it you won't have sensation in either breast. Please note I have no regrets but this was the right choice for me.
0 -
Goutlaw, you could also do a unimx.
Ok ladies I'm now kind of freaked out and don't think I'll get a response from my BS until monday. MO is always lousy about responding to emails. I have two lymph nodes in my pelvic area that have been palpable for several months now. I don't seem to have any other kind of infection. I've had my obgyn and MO feel them, and both think it's probably nothing, but "probably" isn't working for me given that they are still there. I am told that is an unlikely route for anything to spread, BUT it just dawned on me (and confirmed with dr. google) that it is NOT an unlikely route for (God forbid) ovarian cancer to spread. Part of me thinks it's super unlikely that I would have had two cancers at the same time, except that I think BC and OC are related..... MO said I didn't want to have them ripped out b/c then I would be at risk for LE in my LEGS, which woudl REALLY be a hassle, but I don't understand why they can't do a needle biopsy or US or something. I had a CT scan of that general area back in late Jan/early Feb -- if there were GF OC in there, would that have showed up? I wasn't really pushing them on it until I had the OC thought, and now I'm feeling anxious about it.... trying not to focus on it.... thoughts? Thank you!
0 -
New breast implant may deter cancer....
http://www.medpagetoday.com/TheGuptaGuide/Oncology/402470 -
Oh Cypher of all people to answer first ME---I'm of the thought that they feel everthing on our bodies and we feel every worse than they do and mire so But usually they know what they're feeling and if they feel something suspicious theu start tests of whatever it is. I'm certainly thinking u want to make sure and I don't blame u and if u don't hear from them ti Monday that'a really not going to make anydifference except for u being nerveous. And I'm sorry u have to go thru that. I wish for u'r sake u'd here from them right away, but if u don't try and think of it as it might be absolutly nothing to worry about really--it's another thing happening that doesn;t amount to anything except what it feels like. So please try to relax. One thing I have learned over the yrs. is /drs. do use the word probably (meaning to them, it's nothin) but never saying it to us--they also use it doesn't seem like. So those are good words to us.
0 -
Ctphrr, if you had a ct scan of that area earlier this year, I probably wouldn't be too worried. The fact that you have two enlarged lymph nodes means your body is fighting something, but if it were CA of the uterus, don't you think that part would bother you more than the lymph nodes? I think that. Of course it is easy for me to be calm cause its not happening to me! I do know the ovarian CA and BC connection is for BRCA 1 & 2. And if you have to wait til Monday, remember that your MO has seen them AND WAS NOT WORRIED and he KNOWS ABOUT CA!!!!!! So put down the mouse, and walk carefully AWAY from Dr. Google......
I don't blame you, but take a deep breath, and remember how long you had to wait after dc, and they weren't worried about it, so a long weekend, even if it is something, and that us not likely, is just a bit of time. So enjoy the weekend. Much love.0 -
Thanks ladies. I don't have the BRCA gene. My gut tells me I'm fine. My gut told me it wasn't fine when I was having them look at the lump that turned out to be cancer, so hopefully my gut is accurate. I don't know that i would have other pain per se but I have had various abdominal pain and other symptoms, all of which can easily be explained by non scary things. If it is something that would have shown up on teh CT scan, then I'm probably fine, but I'm not sure ....?
Hmm, ashla deleted a post ....
0 -
Hmm, ok dr. google says that it might not show up on a CT scan. does say it would show up on a pelvic ultrasound and I'm pretty sure I have had one of those relatively recently, though not super recently. Like in the last couple of years?
0 -
Cypher, put down that mouse! NOW!!!!!!! LOL
0 -
Cypher...,
Sorry but I know nothing about the subject you are stressing about. I hope it is another of the many false fear incidents we've all gone through together.
This is the post I deleted because I screwed up the link as usual . And it's relevant to the moment too!
http://well.blogs.nytimes.com/2013/07/03/how-exercise-can-calm-anxiety/?smid=tw-nytimeswell&seid=auto0 -
Cypher I totally agree with monn--GET OF THE GOOGLE--first it's not always accurate and 2nd it not right all the time and third just stop it. So with what is going on this thread not google--really google isn't for deciding how sick we are it's for looking into peoples life and finding diert on them--that's all So stop it now. Please
0
