TRIPLE POSITIVE GROUP
Comments
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rozem - so glad you have a buddy who understands - just like the Mastercard commercial - priceless! I was dx'ed 3 days before Pinktober - I felt bombarded - newly diagnosed and I couldn't watch TV without pink commercials, pink football games and the grocery store was a nightmare of pink! Hated it! I was still working in the hospital and they were having BC fundraisers in the main hallway. Arrghhh!
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Chemo started October 5, 2010. I was not liking the pinktober either. I'm over it though. There are some good things that happen during pinktober like the ACS walks that raise money FOR US!
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SpecialK...
I agree completely...I was diagnosed last October and everywhere I went and everytime I turned on the tv and radio I saw pink ribbons....egg cartons, milk cartons , grocery bags. It actually made a difficult time even worse for me. I hope this year will feel different. Just wish we could just narrow own the orgs to a few like ACS to send ALL the money so these people who use pink stuff for marketing their products would try another tack.0 -
Yea Shore no drains--had to correct that I wrote brains--but it's a good feeling to get rid of them.
I love how u got u'r name Ceral peeps--good thing u'r so nice and not killers.
OK my opinion (not worth much) but I think since most of my life I have had bruises and now more than ever--the color should be purple standing for hurt somehow rather than pink standing for cute. Besides didn't u ever go shopping and try to match the color of a top or somethin with u'r bruise color--Oh come on--my friends have actually taken me with them, one was kind enough to take a picture---see the kind of friends I have all like me a little off
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Yea Shore no drains--had to correct that I wrote brains--but it's a good feeling to get rid of them.
I love how u got u'r name Ceral peeps--good thing u'r so nice and not killers.
OK my opinion (not worth much) but I think since most of my life I have had bruises and now more than ever--the color should be purple standing for hurt somehow rather than pink standing for cute. Besides didn't u ever go shopping and try to match the color of a top or somethin with u'r bruise color--Oh come on--my friends have actually taken me with them, one was kind enough to take a picture---see the kind of friends I have all like me a little off
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camille - "cereal" killer - so funny!
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Yea Shore no drains--had to correct that I wrote brains--but it's a good feeling to get rid of them.
I love how u got u'r name Ceral peeps--good thing u'r so nice and not killers.
OK my opinion (not worth much) but I think since most of my life I have had bruises and now more than ever--the color should be purple standing for hurt somehow rather than pink standing for cute. Besides didn't u ever go shopping and try to match the color of a top or somethin with u'r bruise color--Oh come on--my friends have actually taken me with them, one was kind enough to take a picture---see the kind of friends I have all like me a little off
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As a graphic design I agree that pink is the wrong color. Most of the "pink" color I see seems to be light pink signifying little or baby girl.
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Rozem- yep, probably going to take those drains home with ya.
I had 4 drains on my first surgery- my bmx with tram. 2 shooting out under each armpit 2 out of each hip. My PS wanted them under 20 ml for 2- 24 hr periods. This past lymphectomy surgery- my 1 breast drain- my BS wanted under 30 ml for 2- 24 hr periods. Also, I've heard that the less active you are, the less drainage. 0 -
I'm with you guys on the pink. I almost refuse to wear anything pink...never really liked the color anyhow.
Since I'm a runner and part of a half marathon training program for our upcoming one here end of November, the local store wants to do a story on me as a breast cancer survivor and exercise. I really dislike the term survivor. Any suggestions from you girls on a better term? I heard someone say cancer free (like NED) but not sure that sounds?
I was hesistant to do the article because I typically don't talk about my bc experience but if he helps motivate others, I told her I would. Hoping I can get in word about the cold caps too!
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I'm with you guys on the pink. I almost refuse to wear anything pink...never really liked the color anyhow.
Since I'm a runner and part of a half marathon training program for our upcoming one here end of November, the local store wants to do a story on me as a breast cancer survivor and exercise. I really dislike the term survivor. Any suggestions from you girls on a better term? I heard someone say cancer free (like NED) but not sure that sounds?
I was hesistant to do the article because I typically don't talk about my bc experience but if he helps motivate others, I told her I would. Hoping I can get in word about the cold caps too!
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of course i think its important that we raise money for research, better screening etc. However, unlike those of us here who are commited to raising funds and KNOWING where they are going (kay and lago- great work!) the general pop thinks they are supporting the cause when they buy pink and don't really understand or know where their money is going. I worked for several companies that marketed pink consumer products - while it seems commendable i can tell you that for a good majority of these products the amount of money from the sale going to the cause is tiny, they are still making a profit and in some cases a big one. Donating $1 of the sale of a $20 item is laughable especially when the profit is way more than the donated funds.
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For those of you on Twitter the conference can be followed on #ESMO next week and you will likely find many people live tweeting the Herceptin studies on there.
I am heading in for my bilateral MX and recon in 2 days - am hoping I am back on board enough by next week to be able to follow the news. Am heading into the chemo suite this morning to get my 3 week dose of Herceptin before surgery. The Herceptin makes me so tired after each infusion that I likely won't need surgery premeds :-/
Been reading all the details about the Her2+ subtypes with interest... Thanks to all posting.
Jenn0 -
Jen- praying for a safe, uneventful surgery, and a speedy recovery. I'm 8 wks out from my Bilat tram. If you have any questions or need anything, just pm me.
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Thanks guys :-)
MsTori - definitely got the butterflies happening now. Think I have read too much and know too much maybe...
Jenn0 -
jennt - good luck - hope it all goes smoothly for you!
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Sol - They sometimes describe a HER2+luminal type which has high estrogen receptor expression and a HER2+enriched type which has lower estrogen receptor expression.
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Jen you'll be heavily medicated for a while and probably will feel great.
Thing about surgery is it's the opposite of chemo and you don't go up and down. Each day you feel better with surgery. Surgery was so much easier than chemo. I know you'll do great.$1 out of every $20 adds up. This is what I'm starting to understand. Those dollars are really better than no dollars. Yes you see companies make profits but they also have to pay their workers and other overhead. They also take a risk that they will be able to sell all this pink shit. After pinktober it's harder to get rid of the pink stuff. Just like the $5 donations I solicited for the ACS walk. It counts!
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So sorry for my duplicate posts - not sure what's going on with my phone today!
SpecialK -- - thanks, I will check it out. Is G/C glicosimine condontrine (sp?)? What does ginger & tumeric in it do? What us the benefit if a claritin every day?
Lago --- thanks for info in stages. Im still confused about luminal her2 and enriched her2 and have no idea which one I am. The possibility that herceptin might not work for me scares the crap out if me.
Ashla --- you said it perfectly. For me, the post treatment emotional recovery part and trying not to think about recurrence all the time is the hardest part.
Rozem -- good they scanned your back, at least for your peace of mind.
Soltantio -- wish I was a good swimmer, great way to stay in shape. Yoga helps my back a lot. Im going back to work soon and plan to keep an extra mat in my office for some down dogs to de- stress and stretch my back during the day. Luckily I have an office door & not a cube!
Jennt28 - hope it goes well for you. Good luck!
On the october/pink stuff - I used to love pink & look good in it, but hate it now. My 11 year old son watches WWE wrestling and even the wrestlers are wearing pink the last few weeks. Im all for awareness, research, fundraising etc - just wont wear pink anymore like I used to.0 -
jenn good luck on your surgery! i will be looking for your updates since i am right behind you....
shore/ashla the mental part is absolutely the worst part, at least with treatment there is a beginning and end, the mental stuff never goes away (or doesn't for a long time)
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My 17 th and last herceptin infusion is in 3 weeks. Yesterday I asked my mo should I be happy or sad...should I celebrate or cry.....he said... It's up to you.
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Soltantio....
It may very well be that your cancer was ER fueled and that estrogen therapy alone after surgery would have been sufficient.
My thinking is that for us triple positives we have so many layers of treatments . We may not actually need all of them . We're closer to that point now.
I had a mammaprint assay which said I was in the ERbb2 category and that I was high risk. It said that if I did nothing other than surgery I had a 22% chance of that my cancer would recur within 5 years without any additional adjuvant treatment either hormonal or chemoterapy.0 -
sol - I do have Dr. Servan-Schreiber's Anti-Cancer book and have discussed it on some threads but don't know if you saw my post specifically.
shore - I was looking for a Glucosamine/Condroitin supplement that was a gummy because I have some pill dysphagia issues (swallowing difficulty) and this particular brand, which is Nature's Dynamics Organics, happens to have those other good ingredients. I started taking a Claritin, partly because I happened to have some around the house, because I have hay fever and also because some of the ladies on the aromatase inhibitor threads with joint pain have tried them and found them to relieve some pain. I figured it couldn't hurt and I tend to have some fall allergy issues.
For all - if you are seeking some increased fitness check your local YMCA for the Livestrong Program. It is a grant to the Y for providing fitness to cancer survivors - all kinds of cancer not just BC - and it pays for a personal trainer and complete access to all the Y offers for 12 weeks. Not all YMCA locations have it but if there is one near you just give them a call.
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sol - I do have Dr. Servan-Schreiber's Anti-Cancer book and have discussed it on some threads but don't know if you saw my post specifically.
shore - I was looking for a Glucosamine/Condroitin supplement that was a gummy because I have some pill dysphagia issues (swallowing difficulty) and this particular brand, which is Nature's Dynamics Organics, happens to have those other good ingredients. I started taking a Claritin, partly because I happened to have some around the house, because I have hay fever and also because some of the ladies on the aromatase inhibitor threads with joint pain have tried them and found them to relieve some pain. I figured it couldn't hurt and I tend to have some fall allergy issues.
For all - if you are seeking some increased fitness check your local YMCA for the Livestrong Program. It is a grant to the Y for providing fitness to cancer survivors - all kinds of cancer not just BC - and it pays for a personal trainer and complete access to all the Y offers for 12 weeks. Not all YMCA locations have it but if there is one near you just give them a call.
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Soltantio, yes, im highly er/pr+ (95% both). Is it hormone receptor positives that might not work respond to herceptin?
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Soltantio, yes, im highly er/pr+ (95% both). Is it hormone receptor positives that might not work respond to herceptin?
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Ashla I was happy that Herceptin ended but sad that I wouldn't see my chemo nurse. Granted I do pop in now on my birthday with cookies and had her flush my port a few times. No more port flushing for me though so I see her in February. So do the Happy Dance!
I too believe I was over treated but I have no way knowing nor does my onc. She told me with my stats that if I only did surgery I would have only have a 40% chance of being alive AND NED in 10 years. Didn't like the odds, did the treatment.
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shore1/sol not sure if this is relevant but i had neoadjuvant chemo and had a complete response. Im the same as you 95% er and pr positive, so highly positive. I have read that a complete response being so highly positive is not very common and they see more complete responses with ppl who are er- (either triple negative or her2 positive) so this tells me that the even in my case, the her2 seemed to be what was driving my tumor? not sure if this makes sense but if the goal in neoadjuvant chemo is to see if your tumor responded then in theory mine did. Was it to the herceptin or the chemo or a combination of both? im telling you this to hopefully ease your mind that the chemo/herceptin worked for us even tho our cancers are highly estrogen driven0
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sol - I think the high ER+ is the luminal type and I read somewhere that the anti-estrogen meds work better with herceptin or visa versa.0
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Shore, Soltantio....
My cancer was 65% Er pos even though I'd gone through menopause years before. I also had a complete response to neo adjuvant TCH...
Don't know if it was chemo or Herceptin or both. Also.....my cancer was grade 2....not grade 3. In a few years the trial I'm in and , many others may help us know.0
