TRIPLE POSITIVE GROUP
Comments
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Wow, ashla, really interesting article. Gosh I wish i knew which category I fell into! (Me and what army, I know.) The other thing they didn't mention is that it would indicate what kind of follow up you needed, I would think. I mean if you are in one of the "herceptin not too effective" categories, it seems like things like PET scans would be more necessary. If you're in the "effective" category, then the threshold for doing one would be higher, which is a concern b/c it introduces additional radioactivity in your body....
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Cypher,
I'm printing it out to show my MO this week. Wonder why it didn't make the SAn Antonio Breast Conference.
I actually have some info on 70 of my genes.This science is moving toward specialized treatment maybe even beforemany of us finish our hormone therapies.
Don't like the 25% recurrence number. My Mammaprint put me in the high risk category. Stated that WITHOUT additional treatments...other than surgery..I had a 22% recurrence risk.0 -
nicky i have asked this question many many times. 2 MO's have told me that the reason they don't just rip out the ovaries is that the estrogen they are producing (and yes there is still some estrogen production even in menopause and on tamox) and that this is protective to our bone/heart health. There is a risk/benefit ratio that they look at. My gyn said that menopause is menopause and whether you remove them or shut them down its the same thing. I think i may wait until I get closer to natural menopause - im 43 (44 next week ! - xmas day, how much does that suck!) so i can reap some of the protective benefits. Im with jenn, no more surgeries no more parts removed please! and yes the uterus is important as it keeps everything "in place"
jenn sounds like you are feeling a bit better...
how are you guys doing over the holidays....i find the depression is worse for me during holidays uggghh
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Rozem...
I've repeated this many times but I find holidays and birthdays are more likely to disappoint than to bring special joy because you expect more from them. Even if they are regularly happy days....you're already let down. Add to that the stress , family conflicts and financial effects . With us there is that how many more of these will I see and why doesn't everyone else understand that and it adds up to depression.
My " holidays" are those regular days when you expect nothing will happen and everything goes right.
While I don't feel depressed I can't wait till the holidays are over . I also hope that most people enjoy them more than I do!0 -
Hmmm, so I wake up feeling hopeful for a few happy days and so far today (keeping in mind it is the height of summer here): our pool pump is dead and hubby has to go off and buy a new one, and then when he went to go in our big car he found that the starter motor in the car is stuffed (that's not quite the word he used to describe it to me...).
We are tight on finances this year (something to do with surgeries...) so we really can't afford all this and as you can probably imagine I now have one very very angry, frustrated, husband...
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rozem - The few times I have had my estrogen tested since chemopause it was undetectable, low, then the high one with the letrozole and now back low again. I didn't mean to imply that they don't produce any estrogen in menopause - they do to varying degrees it's just so much less than during their hayday. Yes, a better way to say what I said before would be to say that with chemo and tamoxifen my ovaries produced menopausal levels of estrogen. The femara/letrozole caused them to return to producing pre-menopausal levels of estrogen and then when back to tamoxifen the levels went back to menopausal. that's more accurate -thanks.
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Jenn, believe it, you've been through a lot! Keep trying to sort through it like I am doing too!
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Dragonfly - Good to hear that you've been doing well, but sucks that you're having this biopsy stress around the holidays. Seems like just when we feel a little moved on, some ache, pain or symptom comes along and brings it all back up. It will probably turn out to be a tamoxifen SE, but I know that doesn't take away your worry. Let us know how it works out.
Seems many of you have had hormone levels tested. I asked my MO about this, and she said no reason to right now, and it won't change anything as far as my treatment. Maybe that's because of my age? The fact that period will likely come back and I'll stay on tamoxifen? I thought I understood when I aske dher about it, but then I read about others getting levels tested and her explanation doesn't seem as clear to me. I'm 42 (43 in February) and no period since chemo 9/26/11. Is a hormone level test something I should really be asking for?
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Shore: My onc sees no need to test hormone levels either? I'm not sure I understand why.
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My onc doesn't test hormone levels either. Maybe b/c I am so soon out from tx (PFC June 2012). I'm 44, no period since last one after 1st chemo. At this point my understanding is hormone levels are not reliable enough to determine if I am in true menopause or not, so they assume not which = Tamoxifen.
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Jenn - can't you claim the pool pump on your house insurance - I actually made a profit on mine recently because Energex were giving a $250 EFTPOS card if you bought a 5 star or better pump - I ended up getting a Hayward - fabulous 3 speed honky tough American one. Glad you are feeling a bit better otherwise.
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dragonfly, wishing you good news with the test results. As an aside, when I first started reading the archives here I sent your youtube video link to my husband because I was so inspired by it.
jenn, ugh, mechanical failures on top of everything else. So frustrating. The meetings with the psychiatrist sound like they went well. Working/never missing a day during chemo has to have been really stressful.
ashla, great post re: the holidays. You really touched on many of the feelings I've been having lately. Also, I want to take some time and read the article you posted.
nickythebean, I will keep you in my prayers (re: the upcoming MRI).
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The discussion about the uterine issues both menopausal/premenopausal and postmenopausal is really interesting. I was really surprised that my estrogen receptor level was as high as it was, considering I haven't had a period in over nine years. At the moment, I can't remember the estrogen number but I'm thinking it was over 60.
My gynecologist tested my hormone levels in late July and the oncologist tested them in late November but I keep forgetting to ask him for copies of those blood tests. I need to do that at the next appointment.
I had the portacath/port placed this morning. General anesthesia performed by a thoracic surgeon. I guess it went well. The surgeon is such a nice person. I really like him. During yesterday's pre-op appointment (first time meeting him) he said "have you ever seen a portacath? There's one sitting in front of you on the desk. I've had one." Turns out he had cancer ten years ago and his oncologist was the same one Relda and I go to. The best part was the chihuahua in the office. I was having one of my not-so-good cancer days yesterday and that sweet little dog really did wonders for my spirit!
I have to have a PET scan next week and I'm so nervous about it. I truly am an ostrich.
Chemo officially starts January 2 and will include the 2nd dose of Herceptin. I keep repeating the following to myself - over and over again (and even out loud in the car yesterday) "expect the best possible outcome." Sometimes I feel like I play the role of two people in this "cancer experience" - the role of the adult trying to talk some sense into the scared sh*tless child and the role of the scared sh*tless child trying to just keep it together. My other mantra is from that nineties comedy, Bowfinger. KIT, KIT (keep it together, keep it together).
As always, wishing each and every one of you all the best each and every day.
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Jenn, re: the pool pump we had a somewhat similar experience to suzie's - it was covered by a home warranty policy that we've re-purchased every year since buying our house.
We had the pool completely refurbished in late 2007, including new equipment, and the Pentair pump went bad in early 2010 (far too soon than it should have, IMO). I really wonder if the early failure was caused by the big fire we had in the Angeles Forest in 2009. We had soot in the air for months and during the fire, so much soot in the pool.
In any case, we ended up getting a replacement pump for far less than it would have cost without the insurance policy.
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Nickythebean......I'll be praying for you next week. God bless you!
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Dragonfly you know what I say… don't start worrying until someone actually says there's a problem. Tamox has this SE but it doesn't automatically mean you have the C. If it were that common the FDA wouldn't have approved it
Rhonda my tumor was in the posterior region. A big one too. Like you I couldn't wait to get the thing out. it was 2 months after my mammo that I finally had my BMX. MRI also showed no issues with the nodes. They won't know for sure till the get in there but my nodes were clear. Hope yours are too. As far as icing the fingers on Taxotore, you really need to keep them pretty cold. I did it after my 2nd TX but my nails, all of them were a mess. Never did fully recover but it's really are to get this especially as badly as I did.
Ashla I don't feel that way about my birthday anymore. Actually last year I went and delivered cookies to my onc & staff, BS and PS offices. Also got my tatts. Every birthday means I'm still here!
My onc tested my hormone levels for 5 months PFC. I had my last period 2 weeks before chemo started. She put me on ESD (estrogen sucking drug/Anastrozole) because she felt I was so close in age to menopause, especially based on family history that it wasn't going back. My levels were that of of prepubescent male.
Hang in there nickythebean I had lesions on my liver that my onc scanned for 2 years. one disappeared and the other 2/3 were stable so we feel they are cysts. No more scans for me. Hoping the same for you. BTW have you been over to the Illinois Ladies thread? This and that thread are my favs. Just wonderful supportive women! Some of us meet up too. We are all over the state.
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Lee - I'm lucky, I have membership at my pool shop and get special prices. They quoted the insurance co the full price. I had to pay a $250 excess, but that was wiped out by my discount price. The cash gift card I got saw me about $130 ahead. Here's hoping my US made pump lasts for years and years
I espceially love as I can run it on low speed all the time, hence saving electricity (I hope).0 -
LeeA here's my seat-belt lecture. (I assume you drive but I have a crosswalk lecture if you don't):
You get into your car and drive yet don't think about getting into a car accident every time you go somewhere. You put on your seat-belt just in case and go about your day. Chemo is your seat-belt. I mean there is a chance you may not even need it but right now the odds say you do so you get. Just like most of the time you don't need a seatbelt… and most of us have yet to engage our air bag. Just nice to have those safety nets for the "what ifs".
Don't spend your life thinking about the "what ifs". You are getting treatment and if there is a "what if" there are meds out there to keep you alive for a while… and hopefully for those who do get a what if the cure/vaccine will come soon. Meanwhile in order to be a survivor you need to live otherwise you are not surviving.
All life is terminal. I know I don't think about that.
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Morning Lago..
Probably should put the seatbelt lecture on your reminder list. We all need to read it every few months at least.
Personally , although I'm only a year into this ride, every time I try to live a few days without thinking about it....some doctor's appointment or relevant symptom is there to remind. The bandit cancer reminding me that he's the boss of me from now on.
I hope that as the testing , appointments and symptomd are less frequent, I will have longer episodes of breast cancer free thinking.
Congrats on the new job!
Love all the talk of your pool pumps. The wind is howling outside , gusts of 55 mph and it's 37degrees
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Ashla it's not that I don't think about breast cancer. I actually think about it a lot but more about other people's cancer being a ACS/Imerman Angel volunteer. 1 year out isn't that long. I think once my hair came back to my real hair in texture was about the time I felt "done" and really ready to move on. I remember going for my tats last year in February thinking "I'm still doing this crap. Thank goodness it's done." Only to have my onc tell me that spring she wanted to do yet another scan (6 months from the last one instead of one year). But I'm all done with those now too.
OK need to strength train before haircut.
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Lago's strength trainng reminded me to tell you that I've been trying some yoga since you girls posted the info. Chair yoga once a week ...if possible....and then those from Dr Fishman's book .
I work out with weights and do treadmill, bike and stairmaster at least 4 days a week and cannot believe how much trouble I have with even the simple yoga poses. I am so stiff and my balance is off.
in the New Year I hope to find a way to do more yoga. Imho it is refreshing both physically...after the initial aches...and mentally. I like the music too!0 -
Morning Ladies,
I'm off to a family function today, so I don't have a lot of time.
Dragon, I had a slight thickening of the uterus. This is VERY common, per my OBOnc, on Tamox. It is one of the reasons I had the Ooph because they have to do a biopsy EVERY time they notice it, which was once a year for me. After the first biopsy I decided, um HELL NO! lol
I wanted off Tamox. I didn't feel Tamox was working for me. But wouldn't you know it? The AI caused all kinds of issues with my joints...so back on Tamox.
My personal opinion about estrogen is this. I didn't really care what my hormone panel said. I've met plenty of highly ER+ women who are years past menopause at diagnosis. They still produce enough estrogen to feed cancer, but not to ovulate. So just being post-menopause wasn't ironclad enough for me (turns out I wasn't anyway, my periods came back about the time my hot flashes went away). I wanted NO estrogen. (And let me say, that certainly has its drawbacks, but in the end, I'd rather die of heart failure than cancer!) Again, as I've said before, I chose an Ooph because the uterus, once orphaned, shrinks and usually has no more issues..even if it was issue prone before (fibroids, etc). But leaving it in means the structural integrity of your lower pelvic region remains intact...which is important imo because you trade one problem for many others potentially down the road.
Hope this helps
Everyone, thank you so much for the support and PMs. It really means a lot to me. Wish I could report some good news, some bad news, something....but alas, I have not heard back from my Dr, and he hasn't returned my phone calls. The report won't be in my medical records for another week, and all my "contacts" with access to the raw data in the computer system have moved. So it won't do me any good to just go up there.
Here's my take from experience with military health care:
1. The X ray was fine, the Dr feels the no news is good news option is viable. Except he explicitly told me he'd call with the results the NEXT morning. He was young and sincere and promised. In my experience, these young ones really work to keep promises.
2. More likely. Something showed up on the Xray and the GP sent it to my Onc, who is swarmed with patients, will be off for federal holidays, has a more relaxed attitude and might just want to "wait until after Christmas or the New Year" to let me know. Not to mention, because of the holiday, the hospital is at half staff or less so he may not have even seen it yet.
Very frustrating.
However, the pain has abated to tolerable. I can still feel it in my lower spine, but it is not as debilitating. I think maybe the bone pain caused me to "tighten" up the lower back muscles which exacerbated the whole thing. Combined with the bone pain...well, it was not pleasant.
All that to say, at this point I still know nothing.
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Ashla, This is a good website, fromYoga Journal magazine. I like the magazine too. The "livemag" section of the website is good because it really shows you how to do the featured poses. I had nipple surgery and port out this week, and am laying off yoga until stitches come out on 1/3 - I hate to skip it, but I feel a lot worse than I was expecting after this surgery and don't want to risk delaying any healing. I've been doing yoga almost daily since I started feeling better mid-Taxol, and I love it.
http://www.yogajournal.com/poses/finder/browse_categories
Lago, I love your seat belt speech and read it every so often when I get in that panicky place. Like Ashla said, I still have trouble getting past more than a few days of not thinking about BC without something popping up to make me worry. I try to talk myself down using, among other things, your advice about living life in order to be a survivor. Thank you
and good luck with the new gig.0 -
TonLee - Sucks they are leaving you hanging over the weekend and holidays. Maybe theres a chance you can get someone to talk to you on Monday about the results. In the meantime hope you can do some fun Chistmas stuff and keep busy.
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TonLee, It is terrible that you have to wait so long for results. Good news or bad news we need to hear it asap. The stress of BC is enough without additional stress waiting for test results.. I had blood work done on my last MO visit. Noone called me with results,even though I knew in my heart that all was good I needed to hear from them. I waited only 3 days then I called..I am very high strung and they know it. I think I am their worst nightmare lol.
You continue to be in my thoughts and prayers.. Have a Merry Christmas and a Happy Healthy New Year.
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Going for my last TCH treatment the day after Christmas, (YAY!!!!!!!!!!!!!) and I'm starting to think beyond the weekly treatments, which end the middle of Jan. Then I switch to herceptin every 3 weeks.
When can I start planning the surgery to replace the TEs with implants? I hope this can be done while I'm on the 3 week herceptin plan. Also, when does the tatooing happen. Is that painful? It seems such an odd part of the body to be tatooing, but I guess it works. Are there some people who forego the tatoos?
On another related subject, I want to travel in March for about 3 weeks to see my son, who is studying abroad. Is the 3 week herceptin cycle etched in stone? In other words, is it possible to stretch the time in between treatments to a month so that I get more time with my son? If not, has anybody gotten herceptin infusions overseas?
Thanks for the advice,
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cgesg those of us who had neoadjuvant chemo had surgery 4-6 weeks after chemo ended so i would assume you could do the same with the exchange surgery. I have had 2 surgeries while on H - the initial lumpectomy and the bmsx, and never skipped/delayed an H treatment.
as for delaying H - I think if you delay it more than 5 days you have to have a loading dose again, you can double check with your onc but there is a maximum number of days you can delay before this happens. I have no idea how you would get a H treatment abroad or if insurance pays etc
Re: hormone testing. My MO didn't do it. My gyn did.
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Tonlee....
I would have driven myself to lunacy deciding whether to press for answers before ( for me) or after the holidays for my family's sake. I know you're not equivocal about these things like me but your md's seem seem to have made that decision for you.
Shore...
Thanks for the yoga info.
Regards to all....0 -
I missed the Tonlee scare. What's happening?
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TonLee - thanks for posting. You have been in my thoughts and prayers. I hope you are able to enjoy your holidays. We are here for you whenever you do hear your (hopefully good!) news. Xoxoxo
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TonLee - I'm so glad to hear the pain has subsided somewhat. You have been in my thoughts and prayers every single day and you will continue to be... (hugs)
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