About-to-Start-Hormones Group
Comments
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Hello All,
Haven't been writing lately, but have been reading posts. I am currently waiting for pathology report on a cyst aspiration I had last week. All the drs. (onco and radiologist) tell me not to worry, everything looks good, etc. But, it is impossible for me not to worry. KAK, your post made me feel better reminding me that I have a right to worry due to all the craziness we go through. I sometimes wonder how much sanity I do have left!
Wishing everyone only good health from now on.
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Hi,
Recently diagnosed (about 3 weeks ago). I was started on lupron injections, tamoxifen, and zometa. I haven't had any real side effects. How soon before I should notice any results? I have a very large lump in my left breast (they are unable to actually measure same because it isn't showing up as a clear mass on films). It only started growing about 4 weeks ago. I am also a physical therapist. My boss knows but I haven't told any of my patients. Sometimes I get you don't know how I feel because you're not sick (but I actually do). I also was told that if this treatment worked I would have my ovaries out. Is this not a good idea?
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Hi, momfbraj. Welcome. Since your tumor, which I notice from your signature line, is Estrogen Receptor positive, tamoxifen, which will keep estrogen away from the tumor, has been found to be very good at shrinking tumors like this. So, if it works, they're thinking that removing your ovaries, those little estrogen-makers, would improve your survival chances even more by stopping your current major source of circulating estrogen. A lot of women who are pre-menopausal end up going through a similar kind of thing, by having the ovaries &/or their uteruses removed (also, of course, decreases your risk for developing ovarian or uterine cancers).
It's not easy to live with less estrogren in your body, though. At least tamoxifen allows estrogen to go to your bones, which is good. But meanwhile, the skin, joints, etc., all starve for estrogen, as well as the cancer, so you may have joint pain, dry skin, etc. But you'll hopefully be alive to complain about it.
Ask lots of questions. Make sure you like your onc. That's my advice. Tough decisions.
Gentle hugs to you.
Kathi
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OK, I guess it's my turn to start. Tomorrow.
Now done with rads! Yay. Had a whole bunch of blood work done last time I was at the ONC to find out about Tamoxifen metabolizing and also if I am menopausal, etc.I was regular with my periods up until chemo. Bloodwork now shows that I am at post menopausal levels, but the onc feels she is not quite confident that this will hold, she says my ovaries may bounce back. (I am 50 and my mom had period until 54, if you can believe it!)
Onc said If she put me on an AI, she would want me to have the lupron shots for a time to make sure. Apparently, being on an AI with estrogen floating around is not a good thing.
Another test showed I am an "extreme" metabolizer of Tamoxifen. She recommended that given this, that I go on Tamox. for 1-2 years then move to an AI, if they can show for sure I am really "post" menopausal by tracking my blood levels. She would not have recommended Tamox. if I was not an "extreme" metabolizer. (As some studies show an AI is more effective than Tam. at preventing reocurrances, but all metabolizers of Tam were inclueded, poor, mid, good, etc).
I start tomorrow. Any thoughts?
Spring.
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Actually, Spring, that sounds like a very sound plan. It's what I've heard many women do when they are on the fence about their menopause state. Two years on Tamox for someone who metabolizes it well, could be just as effective as going on an AI with Lupron, without the bonus "shots".
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Spring - I don't have any thoughts...just wanted to congratulate you for finishing up rads!
Susan
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I suppose I am in this group. I am to make an appointment with an oncologist in the next two weeks. The oncologist I had seen in Tulsa recommended hormone therapy. I cannot travel there for the office visit as I am near Baton Rouge. I am supposed to be happy because I have excaped Chemo but after reading all of the side affects I am terrified of all of it. I had to go take a valium to finish reading all of the posts.You guys are so brave!! I am not!! How do you tell which of these nasty drugs you have to take?
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Lydia, if you are pre-menopausal and ER+, your onc will reccommend Tamoxifen. If you are post-menopausal and ER+, there are three that I know of: Arimidex, Femara, and Aromasin. If you are ER-, there won't be any anti-hormone drugs offered since they wouldn't be effective.
Not everyone has severe or life-altering side effects from these drugs. Most women have some side effects but find they can cope with them. And if you are taking one of the post-menopausal AI's, your onc can try you on any of the three available and change to see which one produces the least side effects if one produces se's you can't abide.
Remember, you are reading the posts of the women who have had negative side effects who seek out this kind of board for comfort and advice. Women without severely negative side effecst usually do not post.
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Lydia - NancyD is right...most of us only write in when we're suffering! I've switched to Aromasin from Arimidex, and my side effects are minimal. On Arimidex I was having so much pain, but not everyone has that kind of reaction. And, if you do, your onco can work with you to find one that you can tolerate.
I didn't have chemo, but this has to be much easier to handle...if you're on the right drug!
You'll do fine!
Susan
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I took my first Tamoxifen pill last night. I didn't exlpode! lol. Still here. So far, so good!
Spring.
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Spring - Are you sure we didn't hear a small pop?
Hee hee! Glad you got up your courage, now, game on! -
Good for you spring!! Hopefully you will do well. I know you will!!
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Hi everyone,
I have been on Aromasin for 5 weeks/2days & have had no problems. Have some hot flashes, but I was having them before I started due to having stopped HRT last November. I hope I continue to be so lucky.
Hugs,
Val
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Reporting in: Second night of Tamoxifen, not even a small pop this time. LOL.
Do the symptoms, SEs, if any, take a while to hit you? I guess I was sort of expecting something like chemo. LOL . (thank God NOT).
Spring.
PS. Hi Valarie Jean!!!
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Spring,
Yes, they can take a few weeks to start up, or some can be right away. I had allergy-type symptoms (like hayfever) start very soon. I initially thought I was coming down with a cold as I was sneezing and had a drippy nose, but nothing further developed like it would with a cold (no sore throat).
The arthritic aches took some time to develop, and that may be because I was just finishing my chemo (and the the steroids) when I started my Arimidex. The combination of the steroids waning as the estrogen was being depeleted hit me about a month after I started. I have had some arthritis in my joints before (knees, hips, shoulder), but since starting my AI, I have also had pain in every other joint, even my fingers. It comes and goes, and is not debiliatating, yet. I just hope it doesn't get any worse.
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Nancy, Thanks. OK, just hold on for the ride, I guess! It's like the excitement never ends!! lol. Spring.
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Well that is GREAT!! I am a big chicken!! I will do my best not to pop as well! I will make the appointment today!!
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Springtime - It took a couple of weeks for my SE to take effect. Discharge, sore joints, hot flashes and night sweats. I hope that you are one of the lucky ones who do not have the SEs.
Karen
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Spring,
I'm supposed to start Tamox soon, so here's for "no popping" !!!
Good luck!
Ineia
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I am laughing about this no popping! See what you started Susan!!
OK Karen, thx for the heads up. We go on vacation next week, and it's only the "first week" so I will be able to enjoy that without SE's it sounds like, given the "month won't be up" yet!!! This is our first vacation as a family since I was diagnosed last summer. Missed all summer vacations!
Onward with life...
Spring...
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I don't remember any SEs for about the first 6 weeks, but then I had a bad yeast infection. (cleared up with meds and never had another one, just mainly hot flashes). Have a great trip and don't even think about it!
Anne
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Good luck, Spring. I really haven't had much trouble with tamox. It was the darn Effexor that I switched to from my zoloft (because zoloft interferes with tamox absorption) that caused me a lot of problems. But I think I've finally got them all straightened out now. You'll probably be fine.
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Springie~
How is the tamox going for you? I hope so far-so good.
Have a fabulous vacation next week!!

(((HUGS)))
Valerie Jean
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No popping on vacation !! That is against the rules!!
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No Popping Lydia! Agreed!
Valerie Jean!!! It is going fine so far. But it's only been less than a week. I honestly don't notice a thing different yet. I am having hot flashes, but I had those before, they started in chemo and never quit! LOL.
Ladies here said it coudl take 4-6 weeks to hit the SE's. We'll see. I am trying not to focus on it!!
Beaching on!!
Spring.
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I started tamox last Jan durring rads. Only side effects so far is hotflashes which I had before from chemo induced menopause. Oh yes my thumbs have become really arthritic. Somedays I can't function in the kitchen without my meloxicam.
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Hi everyone,
I just found this thread, and I started Tamoxifen last week. I also have just had the hotflashes which I still had from chemo. I will be on this until I get my ovaries removed, then onc wants me on Femara. She seems worried about my bone density.
mumayan, what is meloxicam?
Hope everyone has a nice day,
Deen
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Gals - Here's the link to the new study (or update on an old study) about Tamoxifen vs. AIs for whoever is interested. I'm going to ask my onc what he thinks since Tamoxifen is relatively cheap, about $500 a year vs. the AI which is about $500 a month. (After my insurance kicks in, $250 a month which is still pretty gaaaaah.)
http://jco.ascopubs.org/cgi/content/full/27/6/840
Here's a quote from the study which I think encapsulates the gist:
The ATAC study is a large and well-designed trial that compares up-front
therapy using anastrozole with that using tamoxifen for 5 years in
postmenopausal women with hormone-sensitive early breast cancer.
Results of the trial continue to show a significant improvement in DFS in
favor of anastrozole (hazard ratio [HR] 0.85), but they do not show
improved overall survival (HR 1.0). -
TX Its a pill for Osteo arthritis that works for me and it is easier on the stomach than alotof the others.
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Unique, report back pls on what you find out. My ONC felt b/c I was an "extreme metabolizer" of Tamox, that this was good for a few years to start. Also lets the estrogen flow so better for heart, bones, et.c., she said.
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