TRIPLE POSITIVE GROUP
Comments
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nmoss- My onc recommended black cohosh for my hot flashes. He said he has seen great results with it. I have just not gotten around to getting some.
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Hi all, I'm a bit confused about the ER+ PR+ Her 2+, My report said
estrogen receptor,positive(99%,moderate to strong nuclear intensity)
progesterone receptor,positive(99%,moderate to strong nuclear intensity)
Her2/neu positive(3+)
Ki-67 20%(unfavorable to prognosis)
I get that the Her 2 is positive and +++means for it but I'm confused after reading some threads what the ER/PR mean, and whats Ki-67?
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cotrinh - if your path report showed positive for ER/PR it means that those receptors were present on the tissue sample. The percentage is how many were present - so in your case out of 100 cells looked at 99 of them were positive for those receptors. This means you can benefit from hormonal therapy, if you were negative those meds would not work on you. KI-67 is a protein found in actively dividing cells, I believe can be a measure of how effective chemo may be - in other words, if your cells are not dividing (low KI score) chemo may not work, if they are (higher KI) they can be attacked.
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Tonlee, glad to see your back here, love your new avatar pic, hair is coming in nicely, you look so strong!
Specialk, that is so scary, i know with these surgeries we are always waiting for the complications, since these surgeries are so delicate. Hope all heals well, rest and then rest some more.
I had scans this week for bones and chest and abd. will get results on thurs when I go for Herceptin. had some tiny spots on liver last time that they dont what they are and are keeping an eye on them.
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Thank you SpecialK, I thought I understood it but than I get confused when I read other threads about stuff. Thanks for explaining!
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cotrinh - no problem. Sometimes if I have a question I go to the home page of BCO and click on "Your Diagnosis" and find the topic in the drop-down on the left, or if they have a specific informational category, I will click on that. Their information is very straightforward and easily understandable. You can get some well explained stuff with google too, just crosscheck the source.
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ArleneA: My nose had stopped dripping a few wks ago but then I had a Herceptin & it's started up again. I'm going to watch & see if it stops again & when & if it starts again after next treatment. I just hate it, it's so embarrassing to constantly have a kleenex.
TonLee: Congrats on finishing rads - mine ends next Tues. I'll be taking a plane a few wks later & I'm so confused abt wearing or not wearing the sleeve. Did you take a long trip w/o the sleeve? My trip will be about 5-1/2 hrs. I'm afraid not to wear it but I haven't had any problems but I'm really careful of lifting or using that arm. Are you especially careful?
SpecialK: Hopefully this will all work out good for you. It's scary but it sounds like you just had some swelling & it's gone.
Being on rads & Herceptin I'm not even calling to find out how my recent Echo is as I'll find out my next Onc appt when they give me Arimidex. It's just too much to deal with right now. I don't need any bad results. Two things at a time. lol
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SpecialK You are certainly having a rough time of it lately:( Hope things settle down and you can focus on recovery with no more bumps in the road...Hey, where is our other triplet? I hope the fact that she's absent means that she is doing great!
Tonlee You look absolutely fabulous-love the new avatar! I know what you mean about Rads. It's a real drag. I'm on #25 of 33 today and feel like all my energy (what little was left after chemo) is being drained right out of me...Can't wait to be free of this and to call my days my own:) By the way, how have you done on Tamoxifen and how long have you been on it now-any major SEs? That's next for me...
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dragonfly - I know - where is that triplet? She has PMed me a few times, but I think she has returned to work and is busy, and still recovering from her exchange and associated fatigue.
I feel like the proof of Murphy's Law with TE's - in the 10 minutes I was in the surgery center a nurse wandered by and said "hey, don't I know you?..." I was like yes you do - I think it is bad when they recognize you!!! So far though, I am hanging in.
In your new avatar is that your wig? If so it is great! I think I finally have baby hair on my head. I am definitely growing it back everywhere else. I actually shaved my legs two days in a row!!!
I hope the rest of your rads go by quickly - almost done. I seem to be picking up more appts rather than less. PT twice a week starting next week, fills will start in a few weeks and I volunteered to participate in a research study on mindful relaxation (for $250) because I thought it would be interesting, and that involves some meetings. At the next H only I think my MO will start me on Femara. He wanted to wait until after the surgery. I am curious about how I will do on it. We also had a chat about osteoporosis so I may have to do something fairly aggressive about that because I am already osteopenic and I don't want to crumble!
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Hi there... I am new to this board and came across this triple positive page - YAY! I was dx 10/1/10, 2 months after miscarrying and 9 days before my first year wedding anniversary. I did a lumpectomy with clear margins, sentinal node biopsy all nodes clear. 6 rounds of CTH, 33 rounds of rads, and just finished 6 of my 11 herceptin infusions. I also started Tamoxifen on the 1st of July. So far so good. Ive been doing tumor marker tests every 6 weeks (I cant remember what they're called) the one that should be below 5 has consistantly been 2.4, the other that needs to be below 40 has gone from 26.5, 19, 15, 20.5. The last reading of 20.5 has me freaked out a little bit. I asked my Onc when we start worrying and she said "we dont. even something as simple as a mosquito bite could elevate numbers. okeedokee. I am slowly getting back to me - finished chemo in March and I FINALLY started running again this week (in hopes to get my body back
)I am so excited to have this board!
K.
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Kellennea Glad you found us:) Wow, so sorry to hear how your diagnosis came about-very stressful but glad it's all going relatively smoothly now.
SpecialK Yes, my new avatar is me with the wig-I got tired of looking at my buzzed head and was ready for a new pic. Although the wig is getting hot now with the hair growing in, it has really served me well. It's so nice to just blend in and not get stared at sometimes. I still wear hats on my days off but even then I find that people gawk at me-I'm used to it but occasionally I get annoyed by it. Glad to hear your hair is growing:) Wow, you have a lot of appts! I don't think I could stand it at this point-I'm working hard to clear my calendar...
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Hi Kellenea Sorry you had to join us, there is a wealth of supprt and information to found here. I could not have gotten through without these wonderful women.
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Fitz,
I am not especially careful with my arm, but they only removed 4 lymph nodes, I wouldn't allow them to take any more.
I just live and if LE comes, it comes. I lift weights, pull ups, push ups, all of it. My longest leg on the Dallas trip (actual up in air time) was almost 3 hours (bad weather so cruising in holding pattern).
I'm flying to San Diego in a couple weeks. I don't plan on using a sleeve then either.
Actually when the LE specialist told me that about the sleeve, I quickly googled it and found this on this site...
http://www.breastcancer.org/tips/lymphedema/ask_expert/2008_04/question_22.jsp
Dragon,
Love the new wig! It looks real.
Rads is such an energy suck if you take a lot of it. I've always had boundless energy..not so much on rads...lol. Hang in there...you are almost done!! WOO HOO!
Tamoxifen...4 months out. Side effects include: hot flashes, occasional insomnia, and joint pain. I have "runners knee" from decades of long distance running. I had to give running up about 10 years ago it was so bad. Once I stopped, my knee stopped hurting. Tamoxifen brought the pain back big time. I'm taking mono-sodium glutamate (MSM) for it and that helps. The joints that didn't give me problems at some point in life are fine. Hoping this resolves...if not, I can live with it.
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SpecialK,
My heart stopped a little when I read your account. Whew. So glad it wasn't a major complication!
About the hair. People are so RUDE to me now and the only thing that's changed is I stopped wearing my wig everywhere. The men pretty much ignore me (hard when you're trying to order Starbucks and the barista is male!) but women are the WORST.
I can't tell you how many dirty looks, and outright "hurumphing" were directed at me in every airport and even on the plane. Some women in small groups pointed and laughed. Guess they figured any woman who would choose hair this short is "not right."
I didn't realize women with super short hair were discriminated against...lol. Even my husband noticed it and responded with "What the?" hahahaha And he NEVER notices stuff like that.
I don't care. You know why? I must look pretty dang healthy if people are comfortable making fun of my hair now! So bring it!
And to really make a statement, I bought monster ear rings in Dallas....buwhahahha. The land of big hair doesn't appreciate short flat cuts! If I had a dollar for every second look I received, my trip woulda paid for itself....
Oh and if I hear "you have the face for short hair" one more time.....lol....like I have a choice?
Oh well.
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Welcome Kellennea! How often do you get Herceptin and why only 11?
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Thanks for the welcomes!
Achpurple - I go every 3rd week. I did 6 (the first one for 60 mins, the next 5 for 30 mins each) with my Chemo and now I am doing 11 (30 min drips) without it. How many are you doing?
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kellennea So that's 17 total Herceptins. That's what I'm doing too. Just had #15 yesterday. Have you checked over at the Illinois Ladies thread? Great group of women over there. I've met so many.
Tonlee I seem to be getting compliments on my short hair. It was when I wore the scarves that the people in my building wouldn't look at me.
(I'm sure they didn't know what to say.) 0 -
Lago,
I get compliments. Mostly from black men, black women, and white liberal leaning men (I won't get into how I know this..lol)...but the rest of the world? Not so much.
You're in Chicago. I wonder how people might respond at the airport? That is one of the places I received the biggest and rudest reactions...the Chicago airport....If you do any flying soon, let me know!
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Tonlee Very interesting observation:) I'll hopefully be ready to go topless in the next 4-6 weeks-just in time for my big celebration vacation to Paris/England but my hair will still be super short. I wonder what the reactions will be in Europe? We'll compare notes after I travel through JFK & Charles De Gaulle and wander around Paris and England...somehow I'm expecting more tolerance there but we'll see. Interesting social experiment...0
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TonLee: They probably were just jealous! Maybe they thought you were a movie star!
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Dragon, let me know...I'm very curious now.
Ach...that's what my husband said..lol. Except he referenced my 'flat' belly and boobies....buwahaha
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Kellenea: When you said 11 it just threw me off - everybody either gets 17 or 18 (I'm 17 as of right now).
I can't even remember how many I've had now, actually had one today but the nurse asked me how many that was and I said I couldn't remember but I was going to ask the front desk lady before I left to find out (sort of so I could start counting down I guess). Then I got up there and asked and she said the nurse could look on her computer and see but I wasn't about to go back there and wait for her to access my info on the computer so I just said I'd call in one day. Had been there 4 hours today because some of the people in front of me for "hookup" were unable to get premeds or chemo quickly because of a nationwide shortage of Pepcid - then they said there was also a shortage of Taxol too so they were having to get their insurance companies to approve the subsitutes for those meds. Crazy day!, Glad the shortage wasn't on Herceptin.
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Interesting about the shortages. The only one that has effected me is a shortage of IV decadron (steroid, do I have the right med?). I had been getting it by IV as a premed for Taxotere, but the last 3 treatments were all pills because of the shortage. Any one else have that? I had my last Taxotere Monday, so I won't have to worry about that any more. Just Herceptin from here on out. I got my first 3 Herceptin treatments weekly, so do those count as three treatments or just one since I now get it only once every three weeks, but I assume at triple the dose?
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TonLee that explains it. Chicago (city) is loaded with black women, black men and liberal democrats (including me). The state is typically less liberal, more Republican. They must fly out of the airport. Which one OHare or Midway? I usually fly out of Midway. I might be flying next month. Will let you know.
Kay I always took Decadron in pill form.
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Popping in to say hello. Went for my 3rd triple Herceptin today (I will have a total of 13 triple doses per my MD).
I am back to work full time. That's going well- though tiring. I am walking a little bit- riding the bike some- many nights.
I am 3 weeks today post exchange surgery. That's been going well.
My only meltdown recently was today....my LDH was up from my 7/5 visit (just before surgery). I just noticed it when looking at labs. (My hemoglobin is now 11! YEAH- first ever 'normal' value since the TCH journey. I know the LDH can be from any tissue damage including bruising, etc. I just had a near panic attack. They check it every 3 weeks at least. It's not much above the normal range.
Why in the world does something like that bother me? We all go through so many tough invasive procedures, treatments, surgeries, chemo, etc. I can take the tough stuff- then I seem to let something small upset me. I get mad at myself, but then I realize I am human and still fragile from this breast cancer stuff. It's rough.
Hope you all are doing well. I am feeling much better each day. I am now on Arimidex. It's no picnic, but easier than chemo.
Hope yall are all doing great.
Lisa
p.s. I went 'topless' to work- still am- hair is way way too short- but I was sick and tired of wigs and scarves. Now I am glad I did it. (That first day was like the first day I went in w/ a scarf). Folks have been very kind. Except the jokes one person had...luckily I know him well....if I was sensitive I'd be way upset...
Sorry for being long winded- just needed to connect.
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Hello Everyone!
It has been a while since I posted....I've just been so busy feeling good! The last 2 weeks have been good to me. I've been able to work, and went to a family reunion in the mtns. last weekend. I saw alot of family I haven't seen since my diagnosis. If felt so good to hug all of them
and the weather and the mountains were so beautiful. I am still anxiously awaiting the results of my BRCA1 and BRCA2 testing. I should have the results any day now....still have this gut feeling I will be positve for one of them...but I won't deal with that issue until I have too. The only bummer thing I've had to deal with is another period...right on time. UGGGH! So- I saw the GYN today and he did a pap smear and uterine biopsy. Will have an ovarian US on Fri. So much fun!! But, my GYN say that I am having periods because my ovaries are still producing estrogen/progesterone, which is unusual for TCH...especially this far into treatment. Which makes me wonder if all of this estrogen/progesterone is making my cancer grow since I am so ER+/PR+. ??? GYN is recommending either Lupron or Lysteda or uterine ablation to slow bleeding until chemo is all done...then maybe hysterectomy and oopherectomy?? Has anybody been down this road before?I am all geared up for TCH #3 in the morning. It will be so good to be 1/2 way done with chemo life. I will see the PA before my chemo tomorrow because my ONC is out of town. Maybe he will be able to answer some of my hormonal questions.
I want everyone to know that I gain so much knowlege, comfort and sisterhood from BCO. I owe everyone a big hug and thank-you. I hope everyone is well and happy:)
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Christean and everyone.....just to comment on your last statement.....I have a a close friend who has been diagnosed with lung and lymph node in neck cancer and he and his wife are having their first onc appt today to find out what type of chemo he will have, So we had a little "humpnight" party last eve and their question to me was "where do I get my information about my diagnosis and who is my support?" My answer to them is "how lucky I have been to have the BCO site, and all the knowledgeable women that are going through the same thing." There should be a site that is for all cancers,....maybe there is that i dont know about....also support for the spouses.
Have a great day everyone..I am off to get some herceptin and find out the results of my scans. WOOHOO
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carberry - I agree with you - I can't imagine going through all this without this site and all the wonderful (and smart!) women!!0
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Yes, this site is just WONDERFULL. I had my 3rd TC today. My family doctor and my genecologist also want to remove my ovaries, so I guest my question is the same as Christean, has anyone else had to have their ovaries taken out?
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Jeanne - Is it because you are young?0
