TRIPLE POSITIVE GROUP
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Thanks Lago - IsThisForReal - I hope you recover from surgery quickly!!0
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Thanks Lago for the information.The onc already gave me an order to have the blood test again in Oct so I will see.
I have a friend who had BC 17 years ago. She just had a blood test last month in China to check the cancer cells in her blood and the result was negative. I have asked my onc about this test but he seems have no information about this kind of test. Has anyone else know what kind of test it is and where it can be done? I only know it is not a normal blood test. Thanks!
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Hi everyone:
Sitting in the chair getting my herceptin only, well getting fluids and waiting for the H from the Pharmacy. Onc isn't concerned wth the 60.6 EF from the MUGA. She says I am still above the norm and doesn't anticipate any further drops.
So relaxing sitting here.
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Good luck Arlene. I think that's a pretty good ef. I am thin and athletic and my ef was in the 50's and they kept the herceptin flowing.
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Good deal Arlene!!0
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GeeWhiz: I started at 77.6 so that is why I was concerned and it keeps going down. I was a 1/2 marathon runner before all this and perhaps the lack of exercise is why it is going down. Hope it is now stablizing.
Life sure changes, doesn't it!
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Arlene - the biggest shock for me has been the loss of estrogen. I see so many changes, none of them good except not having a period.0
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Thanks Omaz. I"m doing pretty good post op, so far. Getting lots of rest, etc. And a big congrats to you on your port removal also!
Lago - I hope you get over your cold quickly. I took the flu shot last year as well as the H1N1 shot, and I'll be doing it again this year just to help myself be on the safe side.
ArleneA - my EF dropped as well during H. Not significantly, but a slow decline. I took CoQ10 while I was on H, and am still taking it. My onc. was very agreeable with that.
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Bone density test for me tomorrow. I'm still a tad stuffy but pretty much over this cold. It only took 8+ days. Longest cold I've ever had although only 2 miserable dasy.
Just got back from my 1st day of a 1 week freelance gig. Feels good to be working again. Hope to land a full-time gig soon.
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CONGRATS to all getting their port removed! what a milestone.
Lago congrats on working I go back to work in three weeks and although I am a little apprehensive it is a step to getting back to "normal"
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carberry - Getting the port out is an easier recovery for me compared to getting the port put in! Plus the doc used some kind of long acting numbing injection that kept it from being sore for at least a day. He put adhesive plastic wrap over it and taking that off was a bit painful and then the skin underneath was all red. I used some cortisone cream on it and that really helped. Now just a couple spots where the adhesive pulled off the skin are pink bu healing.
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Hi ladies, I saw a few posts about removal of ovaries and reoccurance. Ive been heavily thinking about removing my ovaries. Whats your thoughts on this ladies? Because we are triple positive, do you ladies have info on this? Thanks
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Cotrinh76 What's your age? I'm 42 and my Gyn and MO are telling me that it's better not to remove the ovaries unless there's a really compelling reason to do so because they still protect your bones and heart during the years leading up to natural menopause. I'm being told that the TCH and Tamoxifen are enough to protect against recurrence...0
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Hi all - got my first fill today! But get this, he filled my newly replaced TE, the poor one that still has the surgical fill from last Nov. got nothing. He is trying to even me out because he only put a little saline in the TE when he replaced it. But hey, progress!
cotrinh - I had a complete hysterectomy 10 years ago and even though I may have some bone issues, they can be watched and medicated. I was 45 when I had that surgery (which was for numerous fibroids, but also revealed a B9 ovarian mass) and I am glad that stuff is out. I think my ovaries were sputtering anyway because I had a lot of very low estrogen symptoms. After a month on Femara I am not having any increase in flashes.
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SpecialK - you look about 25 in your picture!!0
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Hi ladies- I had a bilateral mastectomy last year, and I have expanders. I will have my silicone next month. I would like to know what was your experience on silicone implants?
Thanks,
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omaz - I wish! Thank you for that compliment! My son will be 24 shortly, and I was 31 when he was born! The double nickel is coming in October for me. Wouldn't it be great to look 25, but know what we know now? I was joking with the PS receptionist today about getting some work done on my face along with my frankenboobs because they were having a sale on Restylane fillers!
meglove - the test you mentioned that your friend had may be a blood test for tumor markers - called a CA27/29. Also, my white count dropped after the end of chemo (and Neulasta) but came back about 6 weeks later to a low normal point. Hemoglobin and RBC's were also slow to return to low normal - I am still tiring quickly. At least few times a day I have an overwhelming few moments of fatigue.
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@dragonfly1 - I just turned 35 July. Not married,didnt freeze eggs because that was the last of my worries when I got DX. I'm ok if I dont have children, theres lots of kids to adopt out there plus I got 5 nephews and 7 nieces. My primary and onc think that it'd be a good idea to remove my ovaries. Before they had chemo drugs, they use to remove ovaries if there was breast cancer. Even with the chemo I hear of recurrence.
@SpecialK- I was DX with endemetrosis about 10 yrs ago by my gyno and he had me on the pill continously since, so add the 8 yrs prior to dx, I was on the pill a total of 18 yrs. I never had it scoped or anything so I possibly have lots of fiberous tissue inside of me. My friend had a cyst on her ovaries so when they did surgery they found she had endemetrosis and removed 3 water bottles worth of tissues. Thanks for sharing info it makes me feel better that you've gone thru it and did fine!
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Hi Cotrinh... I'm 42 also, and my gyn and mo said the same as dragonflys... creating other issues if we remove them. They said almost verbatim what her docs said... that they needed a "compelling" reason to warrant removing them... maybe with your endometriosis and not being able to take the pill is driving their suggestion that you have them removed?
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Cotrinh - I am 45 and had a complete laparoscopic hysterectomy in January this year. My onc suggested having ovaries removed to keep me from having my period return after chemo. She said that women who don't get their period back have "better outcomes." I was done having kids at that point, and had had a bunch of gyn issues over the past 8 years, so I opted to have my uterus removed too. I am not sorry about it. It was a very easy surgery and recovery, and I have no issues now. Watching bone density of course, but so far it's fine. And I feel good about taking extra steps to protect myself when I can.
If I were 35 I would probably have thought longer and harder about it though. You are much younger, and the physical risks might outweigh the benefits.
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I know we had a discussion going a while ago about 17 vs 18 Herceptin infusions. I had a followup with my MO yesterday and asked her what my plan is and she said that she bases it on a total of 52 weeks. When she counted it out from the beginning that means that I'll get a total of 18-interesting how things can vary for all of us.
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Hi everyone! Hope this finds you all well, or as well as can be expected (for those of you in chemo right now).
Lago! Wow. I just got over a really bad cold too. How weird is that? And like you it took me a week...and I never really got sick with colds or even the flu before....glad you're feeling better.
As I sit here and I write this, it is with a numb heart and mind. My 1st cousin has just been diagnosed with BC (almost a year from mine!) with the exact same cancer (triple positive), the exact same size (on ultrasound), in the EXACT SAME SPOT as mine. How weird is that? Even our percentages match on the ER/PR and we're both highly Her2+++.
She is ten years older than me, but like me, really into fitness (she owns a spinning studio and teaches several classes a day).
She meets her BS tomorrow, and will talk over options...though we've talked at length and I think we covered them pretty well.
I'm still just at a loss. Same cancer, same place and both of us under 52....I wonder what the odds are....
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Checking in after a while away from this board. I fell behind 25 screens of postings and kept trying to catch up. I finally abandoned that and came right here to the end. Glad to hear all my +++ sisters are doing well. TonLee: I am so sorry about your cousin. I have warned all my cousins and pray none of them ever get that bad news. It's got to be hard on you both. Also - I have to say you are looking like one hot mama in your new avatar photo. Bridgette Neilsen comes to mind.
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TonLee - Wow, that is weird! You will be such a great help to her. Hi windlass!
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HI ladies,
My onc said the same as many on here regarding removing of ovaries-unless there is some compelling reason to due so, we should leave them in.
TonLee-that is really weird. At least she has you and your knowledge. I would have loved to have some who had done all the research so I would have felt a little more informed on my decisions in the beginning of the cancer journey.
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Hi all. I'm triple positive plus BRCA2+. My surgeon/onc say the compelling reason to remove ovaries has to do with BRCA; that without ovaries, you reduce your recurrence chances of BC by 30% (and being BRCA positive without removing ovaries has a 70-80% recurrence rate). I'm 45 and still have a few years before menopause, but still plan to have ovaries out in the next year (when I'm done with chemo).
Diana
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Hi dianamaps! What chemo are you doing?0
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dianamaps the reason why BRCA+ usually removes ovaries is because you are also at a higher risk for ovarian cancer. I know if I tested positived I would have mine taken out too.
BTW today is my 1 year NED (1 year ago I had my BMX). Also it's been a year since I wore a "real" bra other than the sports bra when exercising. Sorry I didn't post earlier. I'm working a freelance gig this week.
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Congrats on 1 year NED lago!!!0
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I had round #2 of AC last Thursday (8/25), two more to go. Then 12 weeks of taxol/taxotere, that begins to overlap with one year of herceptin. Don't know yet if they'll have taxol available, given the national shortages. As of today there's not enough taxol here...
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