For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Some Supplement info - Here goes (you can find labels with full listings of contents on web, in case there are contents you wish to avoid)
- Carlson Labs Very Finest Liquid Fish Oil - 1 TBSP Daily - Per TSP Contains: 1,600 mg Omega-3 Fatty Acids, 800 mg EPA, 500 mg DHA, Vitamin E Natural 10IU (33% DV) - Why taken: Good Cholesterol, Inflammation fighting
- New Chapter Bone Strength, Plant Sourced Whole Food Calcium - 3 Tablets Daily - Amount per 3 Tablets: Vit D3 1000IU (250% DV); Vit K1 35 mcg (44% DV); Vit K2 770 mcg (56% DV); Calcium 770 mg (77% DV); 58 mg (14% DV)
- For achy joints/muscles: Boiron Arnicare Cream or Gel (beware: has some alcohol in it) - Homeopathic, contains Arnica Montana & also Boiron Arnica Montana 30c Pellets (I and my sibling have used these for many years)
For stress - Homeopathic, Bach Rescue Pearls (alcohol free) - fast dissolving capsule, per the box: for when life needs a little mellowing
Will have to continue at a later time with CoQ10 & also MSM, Glucosamine, Chondroitin as I just switched brands & need to gather label info.
If anyone has questions, please also feel free to PM me.
wallan - No nausea thus far on Arimidex, but did have it post-surgery. "Real" Ginger Ale (may have to obtain from somewhere like Whole Foods) has always been a good nausea reliever for me. You can also try Coca Cola (the real one, not a generic - when I was a child Dr. used to prescribe Coca Cola Syrup for nausea.) Hope you find some relief.
Gentle hugs to all.
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For nausea I take the dissolvable mint Zofran.
Coach Vicky
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Well I just took my first Arimidex, lets see how this goes. I've had a shitty few days emotionally and also got my Lupron shot yesterday, so I'm not sure whether I'll be able to chalk some side effects up to either or. I took it with a full meal.
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Hi,
After blood testing indicated that I was post-menopausal (I have no idea when this actually happened as I never completely stopped having periods because I have been on some type of birth control pill until my BC was diagnosed last October) - Now, I am on my 2nd month taking Anastrozole, had no period at all for the past two months but today have had a period like bleed. Vaginal bleeding is not listed as a SE on pharmacy pamphlet, the only SE's that I have noticed are joint pain (which water aerobics and yoga seem to help) and drowsiness when I first take my medication.
I was told that I should have absolutely no post menopausal bleeding, so will make an appointment with gynecologist tomorrow, but has anyone experienced pm bleeding while taking Anastrozole? Could this be a sign that this medication is not working?
Thank you,
Celand
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My MO told me that if you.take Arimidex before being completely menopausal, your period could come back. But you've had your estriol tested and they say you are in menopause. You didn't have chemo, did your periods stop between the time that you stopped taking birth control and the time that you started Arimidex? My period so had stopped for two year so before my estriol levels were tested.
No matter what, it's probably a good idea to get checked out
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Sjacobs146,
My periods continued after I stopped the BC pill (progesterone only mini-pill) in November 2016. I had a period in November, skipped December and January, had a very light period in February, didn't have one for March or April. Now today, I had a period!
My gynecologist was concerned about my continued periods in spite of the fact that my blood work indicating that I am post-menopausal and did a uterine biopsy in February, which was negative for cancer.
Some other symptoms that I have noticed in the past three weeks are acne, vaginal dryness and closer to this bleed headache (like I would sometimes get around the time of my period). Also, when I first began taking Anastrozole, I had some ovarian pain, which my MO told me would happen as my ovaries began shutting down.
All of this is very frightening to me - hope that this is maybe my body slowly adjusting to the medication?
Thank you for your insight,
Celand
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OK, the gynecologist had told me that I may be at beginning stages of menopause, so I am thinking that I may not be completely menopausal, since one also must go one full year without a period to be considered menopausal? Could it be that I may not be completely menopausal?
I am going to stop taking the Anastrozole until I get this sorted out - perhaps my oncologist will put me on Tamoxifen until I have gone one complete year with no period.
Celand
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Sounds like your MO jumped the gun on the Arimidex. Did they do a bone density scan on you before starting Arimidex? It can cause bone loss, so my MO saidthat they'd check my bone density every two years.
They'll probably put you on Tamoxifen until you're fully in menopause.
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what sjacobs said. ^
Just a small reminder for those taking Calcium supplements. I take 1200 but take 600 am and 600 pm. Because your body can't absorb more than 600 units at a time. Don't waste money on larger amounts.
Much love
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I am not taking my Anastrozole dosage beginning tonight - all of this stuff is scaring me (I just read how it could really be harming me instead of helping me since I am probably not completely menopausal) I don't want to risk a recurrence of my BC.
Yes, my MO did order a bone density test on me prior to prescribing this AI - results were good - he also conferred with my gynecologist regarding her opinion on what my menopausal status was - he wanted to make sure that I was truly menopausal before prescribing it to me.
I think that my gynecologist is mistaken about my menopausal status - she was only relying on my blood work, which she said indicated that I am post-menopausal, however, I am reading that a woman is not considered postmenopausal until she has no period for one full year.
Guess it will be Tamoxifen for me.
Celand
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Well, I was in contact with my MO (thru his nurse) today and he does not want to just switch me to Tamoxifen but wants to know instead why I am bleeding since my blood work indicates that I am post-menopausal!
Luckily, one of my gynecologist partners was able to squeeze me in for tomorrow afternoon to evaluate me for post-menopausal bleeding.
My question is what is accurate way to tell if one has gone thru menopause.- thru blood test OR the absence of period for one complete year?
I just don't want to take Anastrozole if I am not post menopausal.
Celand
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Celand, sorry you are having this additional stress. Hope you get the answers you need at your appointment today. Regina
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Regina,
Thank you - I sure did get answers from my doctor's appointment today. They did an ultrasound and everything looked normal - she did say that they go by the blood work results to determine menopausal status and not by clinical definition of no period for one year. She told me that the Arimidex / Anastrozole made me bleed - she said since I have been skipping a couple of periods at a time that my ovaries were shutting down - she also would rather see me on AI rather than Tamoxifen because those are better with less side effects than Tamoxifen.
My body is adjusting to the medication and this kind of heavy period was quite normal for me. She said that I also needed to come in whenever this happens to continue to check that things are OK.
Celand
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Celand,
Hopefully the periods will stop and you can continue to take the Anastrozole without any problem. It really does seem like a wonder drug for us Estrogen positive women. I've been on it 2 months now and so far so good!
Regina
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Regina,
I hope so, really, the other side effects that I am having include some joint pain (which water aerobics seems to be helping), sleepiness, mild itching are tolerable right now. The reason that I didn't want to take Tamoxifen was because the list of side effects were so much longer than the AI's. And Arimidex had the shortest list of SE's.
Glad that this medication is working for you!
Celand
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Afternoon ladies. Hope all are dong well. Over a month off the anastrazole and feeling better. Started the exemestane 1 week ago.
Anyone have much experience with this new drug yet?
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I was diagnosed with osteoarthritis in both knees a year before being diagnosed with cancer. By the time I started my treatment for cancer, my knees were so bad, that I had to walk using a cane, or walker depending on where I was going. The chemo treatment of course gave me bone pain so my hurt even worse. Once cancer treatment was finished I had knee replacement surgery to my worst knee. This helped a lot in relieving the pain. Having said that, I was put on hormone therapy (starting with Letrolzole) but the side effects were so severe with respect to bone pain that we changed treatment four different times. The latest was Arimidex and it turned out to be, for me, the worst. The bone pain was gone, however, I started sleeping for 22 hours a day. In an effort to see if I had Chronic fatigue, they started a series of tests to eliminate other possible factors. Meanwhile, my life was virtually in the toilet, non existent. I couldn't drive anymore, or buy my own groceries, sometimes barely having the energy to walk to the washroom and back. It was a nightmare ! My primary care physician finally decided to look at the side effects of the pills my onco had me on and to his astonishment, and mine, we learned that 22% of women on Arimidex experience chronic fatigue. He immediately took me off these, as well as reducing my cymbalta (which I take for neuropathy, a side effect from the chemo) t the smallest possible dose. The change was noticeable almost immediately. I have been off the Arimidex for three weeks, and although I still have low energy, I am able to drive again and buy my own groceries,and make doctor's appointments. I was upset that my own Onco didn't think of taking me off these when I saw him months ago and complained about my chronic fatigue.
I am choosing to stop all hormonal therapy as the side effects are not worth the way they effect the quality of my life. Every person is different. You may find Arimidex will be fine, or you may go through different ones before finding that magic bullet. Find out what the side effects are, and they pay attention to your body. Lots of them cause joint pain, that may or may not go away. Different people try different things in order to alleviate some of the problems, but again, every person is different. You will find what works best for you, I promise you that. It may take time, or it may take no time at all. People think the treatment is the worst part of cancer. I think life after the treatment, dealing with the side effects of the chemo and then the hormone pills, the not knowing your body anymore, the emotional trauma......that I found to be worse. People don't want to hear about your ongoing problems. They figure now that your cancer is gone, and you're alive, all it well in your world. They were scared to death by your diagnosis and treatment. They are relieved its over. But for a lot of us, the journey is just beginning.
Just be aware of what you are feeling and don't be afraid to let your doctor know if you're experiencing pain or discomfort. You have to be your own best advocate. Good Luck ! I really hope the Arimidex agrees with you. As for the knees...meh... knee replacements will be in your future...but let me tell you, you'll be rid of the pain finally !!
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Morning ladies
EraseAndRewind, thank you for sharing. It's very difficult to decide what works or whats best per person. I was angry to learn exemestane is used by body builders *sigh* no wonder I've been angry since the second day. First day was awful hot flashes. Frustrating.
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Eraseandrewind....so sorry you had to go through this. Your story is a prime example of why we have to be aware of the SEs of anti hormone therapy. It infuriates me that MOs deny these SEs. You should not have to go to your PCP to figure it out. The doc who prescribes these powerful drugs are responsible to do so! We need to speak up for better treatment options. Good luck to all navigating this complicated disease.
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Simplicity, I was on anastrozole for about 6 months when the SE's got so bad I couldn't function. I had flu like symptoms, heavy feeling legs, confusion and panic attacks. After a 3 week break I started on exemestane. I have been on it for over a year now and I am doing really well. Very few SE's including the only mild joint pain and some depression but I have always been mildly depressed due to circumstances.
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Evening Molly50. Thats great to hear! Gives me a bit of hope. Not far in, hot flashes have increased, and Im just angry. Granted, single mom, 3 kids, full time work, trying to somehow manage a relationship thats just, frustrating.
Eh, maybe its just life. But its been a much more intense anger. The SE's on the anastrazole for me were horrid.
Hard to distinguish whats life, and whats life after?
Thanks for sharing.
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I now have a full week in with anastrozole, and have had good and bad days. The first three days were rough, I was queasy a lot, had a lot of fatigue, and some bone pain. Spent a couple of days in bed or just lazing around. This may have been exacerbated by the fact that I'd had my Lupron shot the night before I started anastrozole, and that tends to knock me out a bit and make me pretty achy. Pain I expect and I can handle that, it's something I'll push through.
I then had to get the measles vaccine mid-week and had a serious headache for about three days after that may or may not have been down to that.
I've had some hot flashes too, but I feel I can handle those.
I started to feel less queasy after a few days but the past few, my stomach's been kind of upset again either as a result of, or along with, some BM issues. Yesterday afternoon I was feeling fine and then out of the blue got feelingwoozy and had the gurgling crampy stomach. Same thing happened again today. I'm also more anxious along with this too. I don't know if that is down to the drug (I had similar issues when I started Lupron), or because I'm worrying that I'm going to get sick while I'm out in public. ( btw I never had stomach issues whatsoever before I started on Lupron and now this (I was 40 at diagnosis and very much so non-menopausal, was making lots of estrogen, which is probably why I felt pretty good up until then. I also never had any issues with anxiety, even through active treatment (aside from scan-time).)
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Hey ladies:
I have been on Anastrozole for two weeks now (almost 13 days). The first week I felt nauseaous and BM issues and wiped out. I didn't know if I could handle it. But now, I feel fine. It still makes me drowsy - I take it right before bed. And I have a few minor aches and pains in my fingers, ankles and back now. But other than that, its like I am not taking anything. I don't even get hot flashes.
I hope, hope, hope it remains this way...
wallan
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Hi All,
I've been on Arimidex two weeks this Tuesday and so far no side effects. I have some aches and pains but I attribute that to increased exercise. I can live with this and hope it doesn't get worse.
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Well, after my appointment today with my MO, I felt that he was not listening to me and was aggravated with me as well. He had conferred with my gynecologist and they both insist that I am post-menopausal because my blood work shows that I am. And he claims that my gynecologist told him that she told me that what I had (extremely heavy bleed following four months of no bleeding) was not a period! He says that she told me it was either my very small fibroid or my uterus shedding lining and the only solution to this was a hysterectomy - I don't remember her telling me that the only thing that she told me was that she recommended a hysterectomy but not that I had to get one.
Anyway, MO told me that since I am post menopausal that I was definitely on the right medicine (Arimidex) but that if I wanted he would switch me to Tamoxifen, so I told him that I definitely wanted to switch to Tamoxifen until I meet the clinical definition of menopause (one complete year of no period). Also, he claimed that my problem was gynecological and not his area of expertise, so when I get my hysterectomy, and my ovaries and uterus are gone, then I could get back on the Arimidex.
I left this appointment perplexed and upset as I feel that both doctors are ganging up on me and trying to get me to agree to this major surgery, which I am only wanting to give my body some time to see if I go into clinical definition of menopause (Per recent biopsy, I don't have uterine cancer nor have they mentioned anything suspicious regarding my ovaries except very small cysts and genetic testing results indicated that I was not predisposed to any type of cancer).
Well, I do have my Tamoxifen prescription set up at the pharmacy to begin taking in a couple of weeks (MO also says to take an aspirin every day with the Tamoxifen to prevent blood clots).
I sure hope that I am making the right decisions with my medication switch and putting off major surgery for the time being anyway.
Celand
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Cleland, please don't be bullied into having a healthy organ removed. Hysterectomy is major surgery and is also putting you at higher risk of pelvic organ prolapse.
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Celand...please get a second opinion. This is NOT how you should feel about a major medical decision. I would find a new GYN first and then a new MO. Hopefully at a major university teaching hospital. Don't let them bully you! The right docs can make a world of difference and you deserve it. Good luck and keep us posted.
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Celand
This is BS!
Fire these people and start new with a medical team that respects you.
Remember it is YOUR body and these medical people work for you.
Thanks for posting this also. It is a great reminder to all of us to demand the best care from people we can fully trust.
Coach Vicky
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Celand - Echoing the thoughts of others - Strongly recommend a second opinion. Hysterectomy seems like a radical step. After all the BC stuff, I would not go lightly into a decision for yet another surgery.
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Celand, you don't say if the GYN recommended a D&C. My situation was completely different but I started bleeding several years after menopause. My GYN did a D&C, thinking that would solve the problem (it didn't and I did end up having a hysterectomy) but it's a simple procedure that may help. It's something you might ask about.
MJ
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