TRIPLE POSITIVE GROUP
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Hi all...I have only posted once here right after dx (I post most often on my March chemo board) but I follow you guys and am especially following the latest conversation about chemopause, ooph, etc...
I am only on TX #2 (of A/C x 4 to be followed by *I THINK* Taxol x 4; Herceptin will also be started after A/C). But I am still having my periods right on schedule (I am 38 and regular as always). I haven't gotten into any of the conversations with my MO about what we will do after TX; I do recall a conversation about suppression of the periods at our first visit but that is a blurry memory. I am willing to have any and all body parts removed that would cause recurrence but I guess I may have a while to mull over my options.
Haven't had a libido in quite some time but that is another issue (my DH is a patient, patient man) and now that I am not on any form of bc (took pills for years which probably contributed to my current problem) I avoid the issue altogether!
Anyway...I will try to post more here as I get further into my journey. Last chemo was a week ago tomorrow and I am on the upswing from it. Going to a LGFB class tomorrow after my labs are done and then helping my mom as my parents are moving into their new house right across town.
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meister - WONDERFUL!!!!
Sydneybased - I am wondering about that too - it stops at 2003 which is before they introduced regular herceptin for early bc, is that what you saw?
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Jack,
I was on Tamox about 10 months before my Ooph. I stopped Herceptin in September (heart issues) of 2011, and December had my first period. I also bled during my first TCH treatment, but then nothing until I stopped chemo.
KLT,
Welcome back
To Ooph or Not to Ooph, that is the question! buwhahaha....I'm really glad I did it and am doing all I can to protect my heart from lack of estrogen. (Supplements etc) I look at the heart protective issue this way...look how long women live today...70's-80's some longer and if the average woman hits menopause by 50 they go 20-30 years or more without it.....and they're not all falling over dead with heart attacks...lol. Mostly.Someone asked about symptoms after the Ooph. Pretty much the same as chemo except in my experience, not quite as severe. My hot flashes on chemo were way worse.
I do understand how personal this decision is for each woman who must undertake it. Good to collect all the info you can....
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TonLee my mom will be 75 this October. She had a hysterectomy back in her late/early 40's but kept 1 ovary. Started meno-pause at 51. (She only knew because she got some hot flashes). She did take a small dose of hormone replacement for a few years for her osteoporosis but not very long. (Of course now she is off it because of my diagnosis). She did not take hormone replacement during meno-pause. The dose was so small I'm not sure if it did anything to protect her heart. Other than walking she doesn't exercise.
She has NO heart issues.
What people don't understand is yes there is an increased risk but that doesn't mean you will have the issue for sure. I would also think all the exercising you do and healthy eating makes a positive difference in the "death clock."
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melster CONGRATS on the pCR! told you that nasty FEC is worth it!0
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I am post menapause, and my estrogen was 96. My ovaries aren't producing estrogen. Even if you remove your ovaries, your body can produce a good amount of estrogen. A naturalpathic doctor said I am adrenaline exhausted. Our adrenaline produces estrogen. My adrenaline probably pumps a lot of estrogen through my body.
In regard to menapause there isn't a one size fits all. I knew someone who suddenly went through it at 39. She had her only baby at 38. Others had a very small window of perimenapuase.
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Eve,
I'm hoping menopause goes well for me.
Gonna pick my Aunt's brain over the next few weeks, see how it was for her. I've read some women on this board who had hysterectomies ten years ago have had hot flashes for a DECADE. Yikes.
I can tell Femara (or just plain lack of estrogen) is making me stupid. I'm back to struggling to remember words....HATE THAT....it feels like my mind's eye gets narrow, tunnel vision almost and I can't grasp anything but the mundane right in front of me concepts.
Boo.
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tonlee - that would be me with the decade of hot flashes - still having them, but they didn't get worse with Femara. Try some Acetyl L-Carnitine (do I remember that you took it before?) I took it during chemo and didn't buy more when I ran out. I had read here that lago thought it helped her so I went back to it and I do think it helps.0
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Since chemo, I have been experiencing MAJOR hotflashes. The soak through your clothes kind, particularly at night. I am on tamoxifen. I have always been fairly fit but I recently added hot yoga into the mix.
Fluff, I know why your daughter loves it. It makes you feel incredible. I feel like I am sweating out all the chemo, rads and whatever other toxins made their way into the mix. The hotflashes have almost completely stopped this past month. I sleep like a baby through the night. my hormones were checked, and things seem status quo. The only thing different is the yoga. I have no clue if this is the reason, or if this is the reason...why it helps so much.
I also had a crazy thing happen. I had a lump appear near my clavicle about 6 weeks ago. About the size of a pea. I have been FREAKED OUT. Convinced it was bad news. The onc took a watch and wait approach, especially given all the fatgrafting I have been through. It disappeared after todays class. GONE. Maybe it was a lipoma, or who knows what. i really don't care as long as it is GONE!! Yoga seems to just move things through your system. I love high impact and cardio, but right now...this hot yoga is honestly life changing for me!!0 -
geewhiz - Hmmm, you are making me want to try it!0
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I had the Zometa with my Herceptin last week.... Had to have steroids before the infusion.(brought back memories
) The only side effect I suffered was the flu-like symptoms for a couple of days. SPECIAL K --did your "bone-strengthening med give you these symptoms? Also, my estrogen must be waaaaaaaaaay down, my libido has been terrible
!!! I hope it gets better the further out from treatment I get.Kelloggs-- that is fantastic news!!!!
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Everyonce in awhile I still have hot flashes. Not horrible but enough to remove a sweater or throw off the blanket. It seems with or without a hysterectomy or tratment you struggle with hot flashes. But, I rarely had them through menapause because my doctor then put me on hormone treatment for a few years which most likely contributed to me getting BC a few years after menapuase.
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Bucky I had zometa last week too! I worked a lot last week, so I am not sure if the incredible tired feeling I got was so much work, or the zometa. It passed quickly. I climbed on the sofa yesterday and refused to get off it. I watched movies all day, which I never do. I loved it!!
It was my first time with a new onc. His chemo center overlooks a field with floor to ceiling windows. Holy Cow!! What a difference from my hospital that has hundreds of chairs crowded into a basement area with no windows that I did chemo in. There is a lot to be said for the environment you are treated in...0 -
Eve, glad to hear the flashing slows. I was awakened several times a night from them. Thank goodness my husband is patient with me! I am 45, and am on the brink of menopause. No periods in years since chemo, but hormone levels have me still right there teetering.
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geewhiz OMG, your old chemo center sounds so depressing!!!, your new one sounds so much better
I can't say I was anymore tired than usual after the Zometa infusion, (did the Bronx Zoo the day after with 9 kids LOL) but that evening (after the zoo) my temp shot up to 103 with chills and body aches. Ibuprofen helped and it only lasted that one night and I was back to normal 24 hours later.
hmmmmm I wonder if that is going to happen again 6 months from now?Did you get a fever?
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bucky - with my Prolia injection I had zero SE's - I noticed no nausea or flu-like symptoms, no fever, no aching, nada. I did not have any pre-meds prior to the injection. Maybe because it is a sub-cutaneous and not an infusion. My estrogen has been low for a long time (total abdominal hyst/ooph 10 years ago) so can't address your other issue, lol!
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No fever here. Just a tired feeling, and I am not altogether sure it was zometa that did it. It was a long week and weekend. I went on strike at home Sunday. Refused to move off the sofa until 3 pm. I havent done that in 20 years of marriage, but I have learned to take the time I need. Kids made me lunch and served it on a tray. Great day : )
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TonLee, I have the same issue with forgetting words. Tunnel vision in the mind's eye describes it well. It's especially frustrating when I forget the word for a concept or a movement or a name right in the middle of giving a lecture! It's downright embarrassing and potentially bad for me professionally...
ergh.
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Yep Omaz. If someone could ask their oncologist about this (I'm not going for another 3 months) it would be really interesting to hear the response. I was told that the model factors in herceptin, but clearly it doesn't - not in the way we'd expect.
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Today my hair, sitting bolt upright, looked like one of the naffest hair styles of the 1980s... so much so that my husband had to suppress a giggle when he came home from work. How I love this regrowth phase...not.
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special k and geewhiz ok!!!!.....I guess my body didn't like the Zometa!!! LOL .. maybe next time it will be more accepting... 0
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fluff I ditched the wig also!!! I never wore it at home or with friends, but did for social events, school stuff etc.... Last week my MIL was visiting, and when I was bending over to put things in the dishwasher my DH called me "MOM"!!! by mistake. He thought I was her!!! LOL Apparently, we look alike from the back with my short hair. I think my butt is smaller though, ha ha ha!!0
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NWArtLady,
I've read accounts where women say menopause, or pre-mature menopause destroyed their creativity. I started writing fiction at ten years old, both short stories and novels. Right now after my Ooph and on Femara, I am right back where I was on chemo....idea-less, dead inside, and writing seems just another chore. Frankly I'm feeling a little crazy....both dead, and mourning the dead kind of thing, hard but weeping inside.
Hope it passes soon...I'm not an intriguing "Girl Interrupted" crazy...just the plain ol' ugly kind...heh
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TonLee granted I was peri when I went into chemopause (followed by ESD) I notice no difference in my creativity. I'd be in big trouble if I lost it. It's what I do for a living!0
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Lago,
That's great you aren't experiencing loss of creativity/memory issues. I can't imagine every woman experiences it the same way. But I have read lots of creative women do...especially with pre-mature menopause. You may be fortunate, or since you were already peri, you may be used to it, and your brain has had time to find "work arounds" since it was coming on more gradual.
I think of it akin to losing the ability to walk over a period of years and finding ways to adapt (peri) vs being in an accident and losing the ability virtually overnight (chemo/ooph/etc).
The brain has a tremendous capacity to re-learn, or re-route itself over time...I've seen it numerous times with brain injury. But when it is virtually over night, the interim is the kicker.
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Just for anecdotal information, my mother is 86 and had a complete hysterectomy at 42. Has had high blood pressure for years, but no heart issues.
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That's great Kay!
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I posted on the <5mm HER2+ Why not chemo thread too.....but I'm freaking out! I was prepared to argue why would I need hemo with a small tumor, even though HER2+...... But now I'm feeling like my cancer is being minimized, with only hormone treatment recommended.....am I crazy???
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Bucky & geewhiz, what did your MO say when deciding to give you zometa? I asked mine & she said not usually given if pre-men with no known bone deficiencies, although I've never had a bone density test so who knows if I have deficiencies. Again, I am wondering if there's something extra I could be getting that im not.
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Bcky...that would drive me back to the wig. Lol. I wore mine for everything. I li,e it when people saythat it has to feel so ch better without the wig....not that I look fabulous or cute
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