TRIPLE POSITIVE GROUP
Comments
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Arlene: I was taken off Fosomax after 7 years (two months before my BC dx) due to the concern of long term use causing other problems in the femur.....so I don't think that's an option for me but I'll check with my MO, thanks!
Omaz: thanks for the explanation....something else I was wondering about that is clearer now.0 -
hmmm...this is an interesting discussion about AI vs Tamox. I have asked 3 oncs and all 3 have said that the theory that tamox does not work on her2+ has no legs. I asked that question many many times after reading the discussion boards here.
that said - i am concerned about the tamox/uterine cancer link. My gyn also tested me and i am officially in menopause (round of applause!) so i am not sure based on this info if i can go on a AI - do you have to be meno for a certain time period before they switch you? does anybody know?
i am pushing for the ooph so i can go an an AI -plus i am concerned about ovarian cancer - how high is our risk of ovarian b/c of breast cancer? i know it is linked but not sure how high our risk is
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rozem - I am glad to hear about the tam and her2. I do trust my onc and onc PA and they feel secure with me being on tamoxifen. I thought I was in menopause, but as I wrote, not so, ovaries kicked back in with estrogen production 21 months after my last period.0
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omaz - That is just crazy that that happened. Those ovaries just won't be kept down! Good thing you were monitoring it.
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Dance: it gets really confusing....on every choice we make to fight the beast! First , lumpectomy or MX, then chemo or no, and now Tamox or Aromasin.....it never stops! I hadn't heard that Tamox wasn't effective for HER2+! I'm also concerned about the uterine cancer risk and have heard somewhere that breast cancer and uterine cancer ARE related in some way....I'm hoping that 1 1/2 years on Tamox is sufficient to give my bones a fighting chance when I switch over. That and of course diet and strength bearing exercises, calcium, vitamin D......whew....what an education I'm getting!
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Chachamom-I have learned so much in these last couple years. When I was diagnosed I pretty much didn't know anything about bc.0
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Yes, it's a steep learning curve for pretty much all of us here at the beginning. Geez, I'm a cancer clinical trial coordinator (renal cell trials) but apart from computer randomising patients onto a couple of breast cancer trials on a roster system at work I knew not a lot about breast cancer at all.
Even with my prior knowledge of chemo side effects (which has come in handy since I was able to identify my own case of pneumonitis and persuade the drs to check me out when they didn't think I could possibly have it...) there was still so much else to learn and we have to learn quickly!
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Chachamom you should check with your onc. From what I've been reading is the problem is long term use of bisphosphonates have this issue. If you take a break and start again there doesn't seem to be a problem. I read somewhere about a theory that if you take it long term your bones eventually relay completely on the drug to rebuild your bone. The bisphosphonates dont' do it as well as your own body mechanisms so the bones can become brittle. If you take a break your body doesn't go into the mode of expecting the drug to do it.0
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Lago: that's very interesting! I'll check it out with my MO, THANKS!
Ps: my BS told me 'tongue-in-cheek' that my biggest problem is that I "know too much" and that's why I didn't like the approach of my first MO! LOL!0 -
I am back from the second visit to Wake Forest for the ttrial. Catching up on all the posts, and you will appreciate this...
Chemo threw me into menopause at 55. I had my tubes tied at 32. Yet, I have to take a pregnancy test every time I go for the vaccine, because as they said, "You just never know, strange things happen." Makes me laugh.
Had a great time over drinks and appetizers with NcBeach Gal while I was there. Don't let her fool you with her appearance comments. She looks wonderful.
Rozem....I found a lump in my armpit of the good arm shortly before nipple and fat grafting surgery. I ended up with an MRI, and ultrasound which didn't give any conclusive information. BS told PS she would feel better if it were just removed, so he did during the surgery. Turned out to be a kind of keloid in the muscle, surgery related. I was relieved to know, because it had me freaked out. I am sure you will be fine.
My eye doc is waching me pretty closely also. He said so far ok, but you never know. I can't decide if I am hoping to be switched to an AI soon, or if I should happily go along with Tamox since I don't appear to have severe side effects except for massive hot flashes, which I will probably still have on the AI. Bones are fine now, but worry about the uterine cancer, the blood clot possibility, etc. on the Tamoxifen.0 -
Hello all,
So, I'm definitely having hot flashes from being thrown into chemopause. Several throughout the day, and I don't know how many throughout the night, waking me up, etc. I'm not a great sleeper to begin with (use sleeping pills during my worst days of chemo), but yikes, this sure isn't helping. I don't know how many times I was awake last night. How long did the high frequency of hot flashes last for you guys? I'm betting it really varies from person to person, but I'm still curious. Is this more intense b/c of the menopause being more "instant" b/c of chemo vs normal menopause coming on over months/years? Again, just curious.
2nd question - I don't have a local eye doc, will need to find one for a baseline test anyways before starting the hormone drugs (can't read the small print on things anymore...need reading glasses...ughhh!). Did you guys go to an optometrist or an ophthamologist? Wasn't sure b/c of the cataract risk if maybe I should go straight to an opthamologist to start out with...although maybe they don't even do vision exams? Advise?
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The optometrists here do all the initial testing for cataracts, scripts, glaucoma etc. If they pick something up they will refer to an opthalmologist...
I have had glasses since I was 10yrs so had been going to the optometrist once a year. It was July last year I last went and then went last Friday when I was diagnosed with cataracts in both eyes caused by the dexmethasone premeds for Taxol...
regards Jenn0 -
Dance I never had really bad flashes and mostly at night but I did notice after chemo they went away. Now on ESD I will some warm flashes when I eat a lot of spicy food but very minor. Nothing that wakes me up although they did on chemo. I used to get them on chemo between 2-5am. Your onc can prescribe Eflexor. I hear it works well.
I see an ophthalmologist and recommend you do too. They are MDs. Optometrists are not. Especially since you are getting chemo they will be more familiar with the issues. Ophthalmologists make their money selling glasses.
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hi all
i was wondering if those of you who had taxotere (not taxol) have had issues with brows/lashes growing back? my lashes are so sparse still...im about 5.5 mons from last chemo. I had such nice lashes b4, now they are pathetic and i am still filling them in
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both my lashes and eyebrows are thinner. Lashes don't look too bad though but I do wear liner and have large eyes. Brows I have to fill in. I'm still hoping. They did grow back and seemed fine but then fell out again and never grew completely back. I really think it's from the ESD though at this point but… some women say it took 2 years. I'm not 2 years PFC yet.
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Dance: Yes, definitely an ophthalmologist.
Rozem: While I used cold caps and saved my hair....my eyebrows are definitely thinner and 6 June will be a year since I finished chemo and they still need to be filled it....guessing at this point, they aren't coming back.
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Arlene you never know. I'm further out than you (16+ months PFC) and I swear my eyelashes did start to get better about a month ago.
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Lago: So happy to hear that. I just thought I was going to have to deal with the non-brows. THANKS!!!!
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Thanks guys - will go to an ophthalmologist!
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This is where I am right now.
Had an Ooph because my periods came back. While on Tamoxifen I had sore joints but could basically ignore it.
After the Ooph. Onc put me on Femara. He said it was harder on the joints. About 3 weeks ago, a little more, my lower back started throbbing. I thought it was the 5 yards of mulch I spread, though I was careful to lift with legs, etc.
The pain intensified and I figured, ok a few days and it will lessen.
Except it didn't. In the morning it'd be stiff, but once I leaned over a few times it would start hurting again. And by evening I was actually begging God to make it stop. Of everything, that bone pain is the worst thing I've felt yet.
But I pressed on and hoped, like many of the Tamox side effects, it would go away.
Two weeks later, I couldn't even go to the gym I was in so much pain. Or unload the dishwasher.
Still I pressed on until Friday, June 1st. I decided to stop Femara and see if my back is truly injured or if it is this drug.
48 hours later my back is rebounding. It is not pain free yet, but it doesn't throb like before, and it doesn't ache in bed either.
Here's the thing.
I think my Onc will likely want to put me back on Tamox. That's fine because Femara stinks! I'm not worried about the uterine cancer. I don't consider 2 uterine cancers out of 1000 a bad risk (tamox group in trial), when the placebo group had 1 in 1000.
Here's what I'm going to propose to my Onc. You all tell me if you think it's illogical.
We need to do a current hormone panel to see how much estrogen is actually in my body now without ovaries. The reason is so we have that information, so I can make an informed decision about how much Tamoxifen to take.
Why should I take the same amount of Tamoxifen or even Femara as a woman with her ovaries? It seems to me I can take half the dose and it still be effective.
I'll propose it. Though he will likely not agree with the half dose method because he's not one to go against protocol. But I can't take Femara and have any type of life. And Tamoxifen at least will benefit the bones.
Does that make sense??
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Toni I know chemo is based on surface area calculated by hieght & weight. I'm not sure if Tamox works the same way. Some people do better on other ESD. Maybe give Anastrozole a try?0
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TonLee - not sure if this will help, but may give you more info on Tamox dosing:
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DT,
Thanks. I am familiar with the study w/tamox in preventing BC....and the dose issue...the lack of studies....but I'm hoping my Onc will know something, from experience maybe...I dunno. I do know the SE are less at a lower dose...
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Consider this, as a measuring stick:
http://www.breastcancer.org/treatment/hormonal/new_research/20081215.jsp
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.... On a personal basis, after chemotherapy and radiation but prior to starting tamoxifen, I had no vaginal dryness and still had a very healthy sex life despite the long trudge thru chemo treatment and rads. I had very dense breast tissue. Within 2 weeks of starting the tamoxifen (and without ANY prior warning or counseling by any medical provider), I had vaginal dryness/dyspareunia and sexual dysfunction that only continued to increase and has never lessened. I have never had recurrence. A mammo prior to starting tamoxifen indicated I still had very dense breasts. Within 3 months, a second mammo showed that the breast density had almost totally disappeared.
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Thanks AA.
So many women have no breasts though...so I'm not sure how that'd work for them. I have one breast so I will ask my Onc...thanks.
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Dance....I think it is different with everyone. Chemo threw me into menopause and started hot flashes...bad, drenching ones, two to three an hour. Tried vitamin e...worthless, tried a blood pressure med, starts with a c but I can't remember exactly....didn't work, tried Pristiq, an anti-anxiety, helped a little but not much, so I weaned myself off. After a couple more months of misery, I asked my onc about Effexor, which is really the older, generic version of Pristiq. Figured if something wasn't going to work, it might as well be cheap. For two months it was wonderful. Hot flashes very mild. Now, it is getting worse. I am not having two to three an hour, but probably one an hour or two, and they are not mild. It is embarrassing to know your face is covered in sweat. Not sure if the drug is just adjusting to my body, or it is the hot weather.
I don't really want to up the dose, but if it will help, I will.0 -
TonLee - looks like they looked at doses lower than 20 mg in this study. I haven't read this in detail, but thought perhaps it might be helpful.
Is Low-Dose Tamoxifen Useful for the Treatment and Prevention of Breast Cancer?
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Thank you fluffqueen for the information!
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I've read that DT ... thanks...it's one of the articles I read that makes me want to take a lower dose, or seems to indicate it might be ok.....especially this..
The authors also conclude that the risk-to-benefit ratio associated with tamoxifen may be improved by using lower doses of the drug and recommend further clinical studies to define the utility of low-dose tamoxifen for the treatment and prevention of breast cancer.
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That statement caught my eye, too. The article does make one really question if we really need to be dosing as high as 20 mg. It would be interesting to see what other articles cite this one, and what they say as they are citing it.
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