TRIPLE POSITIVE GROUP
Comments
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Jackboo,
There are studies out that show up to a 30% survival/reduced recurrence advantage for menstruating women who have an Ooph, or take Lupron shots to shut down the ovaries.
I had an Ooph because there is one thing I know for sure. Right now there is no reliable test to ensure Tamoxifen is working. And frankly, once my periods came back even the Onc said it's a crap shoot...the Tamox plugs into any left over cancer cells where the estrogen should go...and because it is a weak estrogen it basically starves the cancer cell...however, once you start ovulating your own estrogen is fighting the Tamox for any stray cells...and it only takes one. '
I read some journal articles that said as many as 50% of women on Tamox don't metabolize it effectively (based on the # of women who recur with ER postive BC while on Tamox).
Frankly, I don't care if it is ten percent. That is too big a risk for me. And the research shows women who get their periods back but suppress their ovaries or have them removed do better, like I said by 30%.
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thanks ashla
great news Kelloggs! thats amazing
i'm not sure if i want to shave it, i'm afraid it wont come back!
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Tonlee I read a study before I started chemo that showed women who are HER2+ were more likely to be resistant to Tamoxifen. That's why I was so please my onc decided I was close enough to menopause that I could go on EST (Anastrozole the estrogen sucking drug).
I'm not sure if there are any more recent studies or if even the studies I read were flawed.
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Thanks Lago...think I ran across that one back when I was considering the Ooph and researching it .... weird thing is.. I have almost all of these journal articles SOMEWHERE! But I can never find them when I need them to be a quick look....but always run across them when I'm cleaning up files or desks.
I am grateful for Tamoxifen. But outside of joint pain, I don't think it was doing anything for me. The difference between almost a year on Tamox and an Ooph and 3 days on AI is amazing. I'm actually having symtoms from low/no estrogen.
That may not mean much to some, but it means a lot to me.
Estrogen has never been my friend so I wasn't sad to see it go...(though I may be in 10 years or so)...and I wasn't even a little shocked when they told me I was over 95% ER positive.
In my heart of hearts, I believe estrogen was my real trigger issue with cancer.
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Just thought I'd share:
So, I'm on my third day of no sugar (including fruit) for the after-Easter-get-off-sugar-please-God-help-me!...didn't even think about it when I made myself a cup of Fage Yogurt. HOLY CRAP....the 0% Fage has 9 grams of sugar in a single cup! Sure, they make it from cow's milk which is "acceptable" in some diets (or in the under 15 grams a day of added sugar), but that is CRAZY!
I'll know tomorrow, or maybe later tonight if it kicked me back to start all over. If I wake up hankering for pancakes or donuts I'll be mad....three days suffering for nothing!
I love Silk Amond Milk, unsweetened vanilla. No added sugar, and it is AWESOME in coffee. Oh well...just a little vent there ladies
One more thing...I looked, am taking generic femara Letrozole...and it's a yellowish orange looking pill made by Stason Pharm. in California.
Anyone taking the same one?
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lago - i did ask 2 oncs about those studies and both said they have not proven to be accurate -who knows.
tonlee - were you on tamox before your period came back? the reason i am asking is that both the MO's i spoke with said that if your periods do not come back you can consider yourself in menopause and tamox was fine. I am pre-men so AI's would have no effect on me. Both would not consider an ooph or lupron until (and if) my periods come back
I am wondering now if I should push the issue????? I am meeting with a new gyn next week, I don't think she will approve an ooph unless both my oncologists agree
any advice????
shore -this is my anxiety showing through again!
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Roze,
I was on Tamoxifen when my periods came back.
If your periods don't come back, you don't need an Ooph because your ovaries are shut down. My Onc said the exact same thing...no Ooph unless my periods came back...so when they did, we scheduled the Ooph.
Generally speaking, you don't need an Ooph unless your bleeding every month, and then you don't HAVE to get one....but until they can PROVE Tamoxifen is working, I wasn't willing to risk it.
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tonlee i just read your post, sounds like you were on tamox for a year. If your periods hadn't come back would they have just kept you on tamox????
i also believe that my cancer was triggered by estrogen - I am also 95% estrogen positive which also did not surprise me one bit. Before i was diagnosed i had a lot of symptoms related to high estrogen - really sore boobs, heavy cycles, ovarian cysts you name it. Thats why i want to make sure i am zapped of any and all estrogen
i am TRYING to stay away from sugar but wow it is hard. Especially after rads i was so tired that i felt like i needed some sugar to give me a jolt. Tomorrow is another day - I will try harder!
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rozem - I am a little older, 51 at diagnosis but was having regular periods. They stopped during chemo and haven't come back. I did 1 year of tamoxifen, they checked estrogen twice, it was low, and they just switched me to letrozole. They wanted a period-free year and a half to say I was in meno for sure.0
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A friend of mine who is ER+/PR+ HER2- is doing the lupren shots and Anastrozole (EST). Granted she is only a year younger than me so you might be headed into menopause soon anyway. She tested out of doing chemo so this is her only gun. She needs to lose weight too.
She's very overweight. 0 -
thanks Omaz - i think they told me 2.5 years on tamox then an AI but maybe thats b/c im 43 and was not close to a natural menopause? who knows. I will have them check me at a year to see what my levels are at
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Roze,
If my periods didn't come back the plan was two years on Tamox and then switch to an AI.
An aside: I'm reading stuff right now about AIs and some of it shows that women who take five years of AIs don't survive as long as women who take Tamoxifen for 5 or a combination of Tamox and Ai. The AIs don't die from BC..but their life spans are shortened. The study isn't well done imo, but I'll be watching the follow up.
My Onc said each drug has its drawbacks. He warned me that women on AIs have twice the amount of joint problems as well as arthritic issues than those on Tamox, and AIs are much harder on the bones. If I want to go back to Tamox, I can do it anytime. Pre-meno women can be on Tamox, but post-meno can be on either.
Whenever I "sugar fast" I realize how much energy comes from sugar, both added and natural. It takes weeks of exhaustion to re-train my body to get energy from complex carbs (like fresh veggies) and I won't be able to do it fully this go around. I'll just be content to beat the monster back and conquer the cravings.....this fall when fresh fruit is less abundant, I will detox fully....
I don't think sugar is evil despite the latest news reports. I like it and certainly don't want big gov. telling me when I can have it and when I can't. Or taxing me for consuming it. Ugh. Talk about adding insult to injury! lol
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For those of us on Femara (generic) I am reading about ways to avoid bone loss....the Z-Fast study evaluates the efficacy and safety of zoledronic acid (I have no idea what that is yet, or what form I can get) in preventing bone loss....It's well past the 36 month evaluation stage and so far the women who took zoledronic acid fare better bone wise than women who don't take it until their bones are deteriorated...
http://www.medscape.com/viewarticle/705747Edited: Duh...looks like ZA is Zometa! Oh well, live and learn.
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Yes that is Zometa.
BTW I think that women on AIs might "die earlier" due to heart issues. The AIs can cause that issue too. The other issue is for those of use under 50 (and especially under 40) the long term effects haven't been really studied from what I can see. Since in general people are living longer who knows what treatment has done to our lifespan.
TonLee how many years are we talking about 1? 3? 10? I'm not going to worry about a year if I'm 80.
But the bottom line is I rather die as an old women of a heart attack then a middle aged one of cancer. Well I really would prefer firing squad but that doesn't seem to be an option.
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Lago, I'd rather go in my sleep, but if you want a firing squad..... LOL!
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My mother is 86 and has Alzheimer's. IMO that is worse than cancer. It's just a horrible disease.
Rozem, I finished chemo in July, have three more herceptins to go, and have about two inches of hair. I would have loved an inch and a half where you are.
Lago, thanks for the recipe! Can't wait to try them, I will not share it.. All for me.
Did someone here say their liver enzymes were up when they were checked? Mine were slightly elevated today. Have to get them rechecked in a week. It's always something. I think it's the d%*+ tamoxifen. I really want to quit that drug. First polyps, now this. And I've only been on it since November.0 -
Rozem/Lago/Tonlee/ashla
Thanks for your replies. Tonlee could you post the link to the study stating 30% reoccurance rate with OS (if you are able) I have been dithering about this issue for 5 months now and must go back to my onco. Last time I discussed it he said that there was no conclusive proof from any study that advocated a favourable outcome from OS for ER+ women. Here in UK there seems to be a general attitude of unless NICE approve a standard of care treatment then the oncologist community sit tight.
My periods resumed just 3 months after my final chemo (I am now 42) In many ways I was happy because the hot flushes ended, my sex drive returned and I generally felt better. I have now had 5 periods post tx. I dont have any SE's from Tamoxifen which concerns me. However, isnt this one a quality of life issue also. A fellow patient (who was menopausal) now has arthritis in her leg from an AL and she limps.
In have had some wobbles with my heart function too. My current thinking is to finish Herceptin on May 11th and then try Lupron. Forgive me, I know the risks but not ecstatic about lack of estrogen symptoms or monthly injections!!!
IS THERE ANYONE OUT THERE WHO IS PREMENOPAUSAL, ON TAMOXIFEN AND SEVERAL YEARS OUT? (who didnt have OS)
Best wishes to all and thanks for the continuing posts.
Liz
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rozem - I was afraid to shave my head again for fear it wouldn't come back too...but it was so fine, sparse and I had strange Alfalfa wispies. It was emotional again, I cried again...but I am glad I did it. It hasn't been 2 weeks yet and my hair is really growing! It's thicker, even and it's dark now, not all gray. I am only 45 and not ready for a head of grays!
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jackboo09 I know a gal who grew up in my town who is several years out and was on Tamoxifen. She said she had no symptoms. Also remember that there is a chance you wouldn't reoccur even if you didn't do hormone therapy. I'm not saying not to do it. It does reduce your risk of recurrence but the point I'm making is it is possible you may not recur anyway. According to my onc if I only did surgery [no chemo/herceptin/EST(AI)] I had a 40% chance of NED in the next 10 years. Of course with all that treatment my chanced of NED rose to 84% so the odds were better if I played the treatment lottery.0
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Kelly, I am so happy for your good news. NED is awesome !! Love to hear that your hair is growing after only 2 weeks.. You give me hope. Have a great weekend,the weather is suppose to be nice. Hugs Eileen
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Hi again Lago
Thanks so much for that. You are very knowledgable and kind! Yes I know what you mean by the statistics. Have you checked out the Predict BC reoccurance predictor? It takes into account herceptin and the specific chemo tx and even with one positive node it put my 5 yr chances of NED at 94%! Having said that stats are scary and Ive learnt to be cautious.
Liz
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On hair: mine keeps growing! I colored it at 3/4 inch so I could go without a wig! My advice--get regular trims while its growing out--it looks better that way!
On aspirin: my MO says, "I think it is a good idea."
On Tamoxifen: I'm premenopausal and it's easy for me to tolerate, so I'm doing it. "May the odds be ever in (my) favor." --a little Hunger Games joke, forgive me!
On sugar: I need to reduce it. But I go crazy when I hear people say "natural" sugar like honey is better than processed, like table sugar or corn syrup. Sugar is sugar to the metabolism.
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Liz are you talking about this one: http://www.predict.nhs.uk/predict.shtml It gives my benefit of Herceptin only .6% for 10 year NED. I find it hard to believe that for less than 1% point the FDA would approve this for early breast cancer.0
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Yes, the stats don't fit with the herceptin hype. Mine is also much lower in terms of benefit than I thought... all that stuff about herceptin being a game changer isn't reflected. Tamoxifen and chemo are the real game changers according to Predict.....
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I was excited about that website Predict when it first came out but I am also confused by the low herceptin benefit. It does seem contrary to what is published about herceptin and what my doctors said.0
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Wow, that is a small benefit for what we're going through. And the cost! This is also not what I was told.
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Holy cr*p!...I'll be asking my oncologist when I get my appt about this!
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Jack,
I don't have time to find the study right this second, but I can give you a few jumping off points...
In 2002 a study was released on Asia/NA women in regards to oopherectomy being beneficial:
http://jco.ascopubs.org/content/20/10/2559.short
Ohio State University has a lot of stuff on it, and I am almost positive it was the one that showed 30% advantage over women who do not have an Ooph and have returned to their periods.
Here are two links...the first is from this site, and talks about (in general terms) a 2008 study. The second link is to OSU's Dr Love..he has so much info ...but this one is on how an Ooph actually may HELP HER2 positive women.....
http://www.breastcancer.org/treatment/surgery/new_research/20080111b.jsp
http://jco.ascopubs.org/content/21/3/453.short
Conclusion: HER-2/neu
overexpression does not adversely and may favorably influence response to
adjuvant oophorectomy and tamoxifen treatment in patients with estrogen
receptor-positive tumors.
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Tonlee- many thanks. That gives me a starting point to look into this further as my onco just sits on the fence. I wish I hadnt mentioned the Predict site as I agree with Lago it seems the benefit of H. is not shown, yet its standard of care for early bc patients. Confusion reigns. Feel quite depressed tonight. There are no definitive answers, ahh!
Liz
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ladies - I just went on the site, the "calculator" is based on women diagnosed between 1999-2003. Herceptin was not in widespread use until 2006 for early stage. Perhaps the benefit is seen as low b/c of this?
also curious as to why when i put in symptomatic under mode of detection i get a higher reaccurance rate then screen-detected??? if the size is the same what does it matter if i found it on my own????
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