TRIPLE POSITIVE GROUP
Comments
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Christean - I had heartburn during treatments too. I basically took prilosec daily for the duration. It helped a lot. And like Omaz's onc, mine siad the same - when I was having a lot of nausea, she told me the Prilosec would help with that too - as well as a weird jabbing pain right under my sternum. It helped all of it.
(I realize I sound like I was taking a lot of pills during treatment "just in case" or to "fend things off" and I guess I was - Claritin for bone pain, Prilosec for heartburn, sennacot for C. But it all worked well for me and I was pretty SE-free. And now I just take my 2 little pills daily - Tamox and Vit D. Easy peasy.)
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carberry - Congrats on finishing rads!!!0
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Chris,
My Onc started me on Nexium for heartburn/intestinal burning issues. I took it once a day, but the day before tch, I took it twice, and continued taking it twice for 7 days....after the first bout .. I never had it again...
Hope that helps and you're feeling better. DRINK DRINK DRINK!!
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Thanks everyone for the heartburn advice! It is much better today-it's still there but tolerable! I didn't know heartburn could be that bad!! I am going to keep taking protonix daily and see if that helps with future treatments.
I am now about 8-9 days since my first TCH. I have had most of the typical SE's (nausea, achiness, fatigue, big D, etc.) but everyone's suggestions have made them much easier to tolerate. There was one SE I had that I did not expect....a monster period from hell!! I spotted for a few days after treatment, and then had terrible menstrual cramps followed by heavy bleeding. It was miserable. But it is gone now. I was really concerned that my RBC would really drop (which it did), but not enough to be overly concerned. My onc. said this was unusual but can happen. If it happens with my next round of TCH, she will recommend uterine ablation. Anybody out there done this?
I am feeling really good now, just a little fatigue but not bad. I am heading off this afternoon for a 6 day camping trip...and I'm feeling like it will be doable. I wondered for a few days if I would be able to tackle this trip, but now I am feeling better and am excited to go. I am expecting my hair to start falling out while I am gone.
Thanks so much for everyone's help!!
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Christean - I have read that others had this monster period. You may not have another one.
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Christean I had a terrible period during the third week of TCH #1 (end of Feb). What an insult on top of the SEs, right? I haven't had a period since...0
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Same experience here. Really heavy prior after first herceptin back in October and no period since. Have had some spotting in the past three weeks and will be seeing a gynie to see if it is my period coming back or uterine changes with tamoxifen. Good luck with your tch. I did that. Lots of bone pain for me but it is a distant memory now. 12 of 18 perceptions done as of this past thurs! Hopefully it will fly by for you too.
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Christean On infusion #2 I had the period from hell also and diarrhea, thought i was gonna die from all the stuff coming from every orifice! But the upside was.... it was my last!!! Start tamoxifen on Mon. but have been in chempause since treatment. hang in there , chemo should make them all go away.
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Chris,
I had a period from hell after the first TCH, lasted 10 days and I became pretty anemic. Haven't had one since though. I think that was my body's last hurrah.
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i'm very happy that i found this site. i had a lumpectomy on june 2 and will see my oncologist this monday. it was only today that i realized that i was HER2 positive and that was just because i called my surgeon and asked if he'd received that portion of the path report. i wonder if someone can help me understand my numbers: estrogen positive - 96%; progesterone positive - 2; and HER2 is 6.6. i guess this means i will definitely have chemo, right? is herceptin considered chemo? since i haven't seen the oncologist yet, i want to go with as much information as i can. also, i'm 65 and post-menopausal. thank you for any help you can give me!!
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Hi yaya - welcome!
The 96% means that 96% of the tumor cells that they looked at had estrogen receptors on their surface. 2% had progesterone receptors. HER2 6.6 means that the tumor cells were positive for HER2 protein on the surface of the cells and most likely you will get chemo because of the HER2. Grade 2 means the cells are little less aggressive than grade 3 but more aggressive than grade 1. The grade really tells you 'how far gone' the cells are from being what they are supposed to be, which are milk duct cells. Herceptin is given for the HER2 part and it is targeted therapy usually done for a year. It is a monoclonal antibody that binds to the surface of any tumor cells that may have escaped the breast or may be lurking somewhere and facilitates tumor cell death. It isn't chemo and though it can have side effects they are usually much milder. some women have almost no side effects from herceptin. It is a great drug for us. So sorry you have to be here but this is a great group of women! Most likely you will also be offered an aromatase inhibitor pill which is an anti-estrogen pill. The thought is that any lurking tumor cells that you might have need estrogen to grow and the pill reduces the estrogen to very low levels which keeps the cells from growing.
Did or will you have radiation?
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I won't be getting any radiation because the triple positive cancer came after a lumpectomy plus rads in 2003. The '03 tumor was 1.5 cenimeters and only estrogen positive. (I took Arimidex for five years). The new one was 1.8 and triple positive. I had a simple mastectomy on June 8th and chemo has yet to be discussed but, I've got the distinct sense that the HER-2+ will make chemo mandatory.
When I had rads, 8 years ago, it was not too bad at all--it was not painful and I had no bad burns. The problem with radiation is more mental/emotional. It's something you have to have done, every day, for weeks and weeks. It's a daily reminder of a fearful illness.
As for skin, my oncologist recommended Aquaphor skin ointment and I used it faithfully, morning and night. It worked best for me (I seemed to have an allergic reaction to Vitamin E oil). It took several years but my breast skin was finally feeling "normal" again and then...a second new tumor...Ack!
Omaz--Thanks--you answered some of my questions, too!
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thank you so much, omaz! my surgeon said that i will definitely do radiation. my choice was mastectomy and no radiation or lumpectomy and radiation, so i chose the lumpectomy. the question is whether the onc will want to do chemo as well as herceptin, plus radiation. i also had DCIS, and i don't know if that makes a difference or not. i've already gained so much information reading this site. i so appreciate your answer. thank you!0
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Yaya and Aerial - You are so welcome - there is a lot of stuff at the beginning. So many terms and decisions and appointments! I didn't know anything and didn't find this site until I started chemo. Glad you are both here.0
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Yaya,
It is my understanding that since Herceptin was tested with chemo, that is the only way Oncs will give it..in conjunction.
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one more question ... is there a a typical way to do radiation and chemo? if so, is radiation done before or after chemo? thanks once again for al the help!
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YaYa Typically radiation is done after chemo. You can do radiation while you are doing Herceptin only.
TonLee I'm pretty sure they did try Herceptin without chemo early on before the trials. (I read the book on the making of Herceptin). Don't know if it was just with mice/rats or a small group of patients. Herceptin did seem to work significantly better with chemo.
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YAYA I had my rads after chemo. I believe that this is the typical protocol.
When your surgeon told you that you would need radiation, did he know that you were Her2+ at that time? The reason I ask is that unless you have lymph node involvement, large tumor and/or close margins, you may not need radiation if you are having chemo. You may only need to have the chemo. But, I am not a Dr. so I am not totally sure. Obviously, your onc will know. Good luck on Monday
Sorry you are joining the club that nobody wants to join. But, this site has been so helpful on so many different levels.
V
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YaYa My Rads are following chemo as well-seems standard. One thing that does vary is the Herceptin schedule during chemo. My MO gave me weekly Herceptin during chemo and then switched it to every 3 weeks but other people had Herceptin every 3 weeks from the beginning (the weekly dose was lower). It was a bit of a hassle to have the infusion every week x 18 weeks and I'm not sure why some MO's prefer that schedule...
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My MO gave me weekly Herceptin for the first four weeks of chemo then switched to the every three weeks. Some of the variations do seem weird.
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I'm having rads now and also Herceptin every 3 wks. for a year. Does anyone know when the year starts? Is it from the first time you have Herceptin alone or is the time with chemo counted?
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It starts the first time you have Heceptin with chemo. I had chemo + herceptin every three weeks the once chemo one done I still kept the 3 week schedule for herceptin. 1st chemo/herceptin was Oct 5th. Last Herceptin will be in September.
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Thanks Lago for that info. I'll finish sooner that way. yayy
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Ladies: I'm flying to my daughter's baby shower and guess I'll need one of those arm guards (not sure what you call them) to avoid lymphedema. Where do you get them?? I don't currently have LE so not sure where to get them from?
Thanks, Arlene
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Arlene you need to be measured so they can give you the right on. Your BS should give you a script for one so insurance will cover some or all of the costs. You BS should know where you can go.
If your insurance doesn't cover it then purchase online. It's cheaper but you still need to be measured properly or you could cause a problem.
This place usually has good prices and specials: http://www.brightlifedirect.com/
Check out this information on how they should fit before you go. The first place that fit me did it all wrong. Both the sleeve and the glove was too short. Glove wasn't a big deal because I don't swell there and probably would have been fine with a gauntlet but the sleeve was a real issue. The also pushed the silicone top so it doesn't roll. It not only bothered me but my LE PT said it wasn't necessary for me or anyone who doesn't have "Oprah Arms" :
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm0 -
Lago - How are you feelin?0
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Not bad. Just a bit sore but getting better each day. Still battling the big C but I have a feeling I will win that war by this afternoon. I really hate anesthesia. Funny but I never got nausea on chemo but I do on anesthesia. The did give me some patch to wear for a day that helped but then it made my mouth really dry. Always some SE but at least I only needed Friday.
Thanks for asking.
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Lago, glad you are doing well and able to post. Anesthesia makes me puke my guts out...every time no matter how long I am under. For the big 9hr surgery they gave me emend about an hr before and I was ok but i think they also gave me other stuff during surgery, whatever the combo was it worked.
good luck for a speedy recovery.
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well, yesterday i decided i would just have a mastectomy, thinking i wouldn't have to do chemo and herceptin. WRONG. i'll know so much more when i meet my oncologist tomorrow, but from my research, i have another question. is herceptin as expensive as what i've seen??? i'm on medicare with a supplemental and according to my insurance website, it will cost me at least $6 to $7,000 for a year's worth. am i reading that right??? thank you again for all your help here.
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Yes Herceptin is $$$ but I don't believe isn't not charge like regular drugs. I would talk to your onc about that. Also the company that makes is has a program for folks that need but can't afford.
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