For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Lee7, actually I was going to ask you the same thing. I don't know if it is my imagination, but I think that switching the A to the AM has helped me a little with the sleep issue. I find that it does not take me 4 hrs. to fall asleep anymore.
Granted, I still wake up a few times during the night mostly to take the covers off, put the covers back on...
Taking everything into consideration, AM is working out better for me!
How is it working out for you?
Lago, I just noticed that my Arimidex is made in Mumbai, India. Why did you say, you stay away from from drug companies from India? Do you know something I don't know?
By the way does anyone use Flax Seed? I was reading that it could actully replace Arimidex due to having the same benefits! I wish I knew how to post the link!
Also, if any of you use Statins to lower cholesterol, how do we know if the joint pains are really from the Arimidex or from that medication? I am so confused, I don't know which to blame!!!!
Mena
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MENA I just don't trust certain places because there is more issues with counterfeited drugs getting into the mix. It doesn't mean that TEVA (an Israeli company that makes many generic drugs) doesn't have some manufacturing in some of these countries but at least I feel I have better chance with them.
China & India are 2 of the companies I worry about. There has been lots in the new about it. Not sure how much is hype but I'm not taking any chances. BTW my 1st 3 months I was on the stuff from India. I had no SE. Now it might be just my body getting used to the drug, and that's what I assume it was but who knows?
There are plenty of women taking the Anastrozole from India that are doing just fine and have all the SE they don't want.
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It is really scary to think our meds might not be what they are supposed to be. I didn't think much about the safety of our food and drugs until the big pet food recall in 08 and the melamine they found coming from China. I guess I'm taking the fact I have SE's on my generic arimidex to mean I am atleast getting the real drug. Hopefully whatever fillers are in it are ok.
Mena, so far mornings may be better for me. I think I am sleeping better.
Maybe that will help with my emotions too. I keep telling myself some of it has to be the lack of good sleep.
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Lee it's probably a combo of both, caused by the Anastrozole. Hopefully in time your body will adjust but if not there are other AI's you can try that might have fewer SE
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lago - Verrrrrrry interesting......of course, reading about your reluctance to take drugs that are manufactured in India, China, etc, caused me to go check my own supply of Anastrozole.
Let's see....Manufacturer: Breckenridge, out of Boca Raton, FL. So far so good. Doesn't seem to have any other information printed, so maybe it's made locally.
Oh, wait.....the "Patient Instruction" sheet......down at the bottom, in the fine print.....
Distributed by: Breckenridge Pharmaceuticals Inc, Boca Raton, FLORIDA
Manufactured by: Natco Pharma Limited, Kothur – 509 228. A.P. INDIA!!!!!
Who knew?
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Anastrozole is from an Indian company or the Israeli company. But like I said many use the drugs from India with no issues.
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I'd be leery of flax, it produces a pseudo-estrogen effect.
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Please help! I had a hyst/ooph in June due to tumors on my ovaries (benign). I had been on tamox 3.5 years. I continued with tamox for 2 mo because I didn't want to switch to Femara at the same time so I could tell what was the drug and what was surgically induced menopause. While still on tamox after the surgery, for 2 months, I was fine. No problems-not a hot flash or pain in my bones. I have been on Femara 2 months and I feel 80. (I'm almost 50). I cannot do this drug for life, which is what my oncologist seems to think is going to be the new recommendation. He says 5 more years for now, then 'we'll see'. I go to see him the end of the month. I feel like he can't understand how bad this pain is and the hot flashes...oh lord the hot flashes! My head hurts alot more than ever I think because my temperature is constantly swinging from one extreme to the other. I can barely turn my head my neck is so stiff. I can't seem to get a real recurrence percentage from him. I love him...he's awesome and a top man at Duke in NC. But he talked me into Femara. And he'll try to talk me into continuing. But I am just miserable. I think he will think it's menoapause but I know it has to be this drug. Does it really make THAT much difference? I've already cut off both breasts, done chemo and tamoxifen. Is it that much of a decrease in recurrence? And what is the difference in Aromisen? I read that acts differently than Femara and Arimidex. I thought of going back to tamoxifen, but now hear that is worse for major side effects and cumlative.
I just don't know what to do. I do want to live. But if I can't get in the floor with my grandbabies, or garden, or even exercise like I did, is this worth it? I just don't know. I used to say I never wanted to do chemo again, and I don't. But I'm almost willing now to do it 15 years from now if I can live 15 years feeling good again.
Thoughts anyone? Sorry to whine. But I don't know who else to whine to.Thank you!!
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snapple7 I am so sorry you are feeling so poorly! I am not doing too well either on the arimidex I am on. It feels like everyday a new pain comes along, ankles, knees, neck, hip ....NOT to mention the memory loss or incredible hunger that all of a sudden I seem to have developed or the 4 lbs. I put on as a result of it.
I don't want to be pessimistic about the whole S/E issue. I prayed so hard that I would NOT have any that I would not be able to handle. Now after less than 2 mo, I think I have already reached my quota.....NOW I have to start praying again that the S/E stop here and do not get worse!
5 yrs. sound like an eternity, but they too shall pass!
Let's all hang in there......
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Mena research the lignans in flax.....they are supposed to be very good for us.
I'm in Canada and we have to order from the States.0 -
snapple I know several women that have switched to a different AI and have done better. One woman started on Femera and went through the hell your describing. She then went on Arimidex, better but still has some issues and is now on Aromisen and is doing much much better. Your onc can give you better information given your diagnosis. I know I am only 30% ER+ and 5% PR+ but from what I understand you can't be a "little bit pregnant." If one of those cancer cells did escape and it feeds on estrogen I know I would want to starve it to death.
But be sure you let your onc know that your situation is unbearable and you need to try something else or need something to relieve the symptoms. Has anyone suggested EffexprXR for your hot flashes?
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Scottiee, that is what I read, but if you read Ruth's answer above, it says to be Leary of Flax! That it could work the opposite way we need it to work!
I'm so confused! And here I thought I had found the solution to
Arimidex!
Mena0 -
As the research goes both ways, I just steer clear of it (and soy) for now.
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Hey Iago, I am 30% Estrogen+ too! Just like a little kid, look, we match.
Day 3 of Aromasin, OK. still have back soreness etc from Arimedex but I am going to be hopeful.
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I have been on anastrozole since July and while the first couple of months were fine, then the achy knees started in. They are actually pretty painful and I have pain in my finger joints, but not as bad. I have had an auto-immune disease and have also been taking prednisone (lots of weight gain...grrr!). The auto-immune thing has basically the same symptoms as anastrozole. So, I can't tell if it's the chicken or the egg! It's frustrating to say the least. I see the rheumatologist tomorrow morning and the MO next week. Hoping to get some answers, but just posting to say thanks for sharing your SE's. It helps me feel less crazy to know that it isn't all in my imagination! I am going to ask about taking Claritin...can't wait to see what the answer is to that one!
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yes, linnyhopp, the crazy SE thing... we are trying to figure out what causes what. So far on aromasin for 5 days feels good! And Ruthbro, ditto. there's lot of things to eat beside soy.
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Ruth--I haven't seen any studies that indicate there is a problem with flaxseed, just the opposite--studies indicate that it does inhibit the growth of tumors.
For those that want to know what Flaxseed (not Flaxseed oil) does, this is from MedMD:
Flaxseed is sometimes tried for cancer because it is broken down by the body into chemicals called “lignans.” Lignans are similar to the female hormone estrogen - so similar, in fact, that they compete with estrogen for a part in certain chemical reactions. As a result, natural estrogens seem to become less powerful in the body. Some researchers believe that lignans may be able to slow down the progress of certain breast cancers and other types of cancers that need estrogen to thrive.
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Anyone had a hysterectomy(including ovaries) to shut down estrogen completely. Looks like mine have started back up.
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This is from the BCO research section:
Research on flaxseed?
Last modified on September 17, 2012 at 7:00 pm
- Question fromJan: A few years ago there was some encouraging research about the effect of flaxseed on breast cancer. Has any further research been done or conclusions drawn?
- Answers -Ruth Oratz, M.D., F.A.C.P.Flaxseed is a phytoestrogen, a substance derived from a plant which has estrogen-like properties. Whether or not these agents have any effect on the growth of breast cancer cells -- either to promote the growth or inhibit the growth of these cells -- is somewhat unclear. It is very difficult to do research in this area and to actually measure the biological effects of these dietary supplements or products. As far as I know, there is no new data from this new meeting regarding the dietary intake of phytoestrogen. In general, most medical oncologists recommend that patients avoid large-dose supplementations with phytoestrogen; however, small doses or small amounts taken in the diet are probably safe.
- Carol Kaplan I agree with that, and we also often caution patients about taking high doses of other plant estrogens, such as black cohosh and soy. We often advise patients with questions about this to run their supplement list by a clinic nutritionist in order to identify supplements that they may be unaware are plant estrogens.
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I've been on Arimidex for over 3 years now. My bc was 100% ER+ I've got many of the se's you ladies are describing. My MO is offering me the chance to switch to Tamoxifen. I have to think about it and make it decision when I see her again in about 3 weeks. Has anyone else gone through this? Do any of you have advice for me? I really don't know what to do. I didn't realize the sadness/depression could be part of the se's. Hair loss is terrible for me. Having more joint problems lately as well as the vaginal atrophy ... just keep taking drugs for every se. Oh, and on statins now for cholesterol. Sleep was a big problem so switched to morning for the drug. But certainly having hot flashes and night sweats - worse than when I actually went through menopause and had ovaries removed. Anyway, looking for some help here. Should I go with Tamoxifen?
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Hi to all, i have been taking Arimidex for 3years now. Very achey in the morning but gets easier during the day, my memory frustrates me i forget simple things, have to write everything down, this can be awkward at work, people are not able to understand and i find that hard at times, as i was always on the sharp end before. Anyway 2yrs to go then hopefully all these symptoms will go. tempted to take a short break from this drug just to see how i feel. x
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Didn't you have Tamoxifen at all? I had 5 yrs of Tamox while getting a year of herceptin (after chemo) and started Arimidex this summer. Thank G-d SEs are relatively mild compared to what I read on the forum, and I can live with that - mostly painful knees every so often. If you didn't have Tamox before maybe it would not be a bad idea. Tamox is actually good for the bones. Do you sometimes get the feeling that we are damned if we do and damned if we don't? SEs with the treatment but more risks w/o treatment. I hope you can find an optimal solution.
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dassi52
As far as I have been told, most menopausal women are given Arimidex for 5 years, and that is deemed sufficient.
I have read other studies where it says another 5 years is necessary. I guess it depends where you are being treated. I don't think I have read anywhere on this forum of anyone taking any meds past the 5 years. I may be wrong though.
For me Tamoxifen was not advisable because I had Pulmonary Embolism during chemo and blood clots are one of the SEs of Tamoxifen. Arimidex has bone loss as it's worst SE but blood clots are not a SE. How long are you supposed to take Arimidex?
This is interesting to hear.
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Hi hrf, reading your post, you are suffering with a lot of S/E from taking Arimidex and you have taken it for 3years now, perhaps you could give the Tamoxifen a try to see if the S/E are less troublesome, it may suit you better. If you did give the Tamoxifen a try you would know if they suited you better otherwise you are in limbo not knowing. having to take these meds is oh so crappy.......so its best to take one with S/A minimal as possible. let us know what you decide x
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at one time Tamoxifen was the only drug out there and both pre and post menopausal women got it. My theory is why not try. If it's worse than the Arimidex I'm sure you can always switch back.
As far as the studies… they are leaning now to 10 years in some cases but nothing conclusive yet. I'm sure we'll hear more after the San Antonio conference this December.
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10 years!!!!!!!! good lord.
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My oncologist says, at present, there is no proof that anything beyond 5 years does any good. If someone were stage 3 and highly estrogen positive, he might prescribe it just to hedge the bet, but otherwise he feels you'd be doing more harm than good to continue on beyond 5 years. I was actually open to staying on it, but he convinced me otherwise.
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I am one of those never been sick, never used to miss work, etc. I almost felt guilty breezing through both surgery and radiation. I read so many threads about so much suffering. I burned pretty badly and that was my worst SE. Once it healed I was fine. Now, after one year on Arimidex, I am really feeling the SE's. When I started i tolerated it well, with no real major issues, so I assumed this would be the case for the full five years. I had disc fusion surgery in my neck in August. After surgery my neck felt so much better. For awhile. Now even though I have much better mobility, I cannot move my new neck without pain. My knees are terrible, my right hip, and my hands are bad. This is all increased drastically in the past two months. I wonder why now? I am up, busy much of the time, I walk. I cook and clean. Then I pay! By late afternoon I am so sore. Then mornings are awful. the only thing that helps are pain meds. I wonder if anyone knows why this should be hitting me this late? I was so sure I would breeze through this too. I see my oncologist next week and will see what his take is. I don't know if a break would help. I think switching to a different AI is somewhat like frying pan into the fire. Any thoughts?
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I hate to sound like a broken record but have you tried Claritin? One 24 hr tablet....the one WITHOUT the decongestant...worked for me and many others. I took it for a few months and the pain subsided so I stopped it. If the pain comes back, I will take it again. My MO wasn't in favour of it, but he said whatever works for you! Check with your MO in any case. Good Luck!
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hrf:
According to my friend who is an oncologist (not mine...too close to treat me she said) Tamox is more dangerous than AIs. I guess AIs are uncomfortable but Tamox is dangerous due to blood clot and stroke possibilities. AIs are not cumulative. Tamox is cumulative, which I believe is why after 4 years I had to have a hyterectomy/ooph after several bouts of polyps/cysts/benign tumors on those parts of me.
That said, I never had one problem with TOLERATING tamox. No hot flashes, no pain. I liked it and want to go back to it from AIs because blocking the estogen site receptor is better than nothing. AIs stop androgen from becoming estrogen. Tamox blocks the estrogen from being used. So Tamox is still a good drug over nothing. And if only on it for a year or two (to total 5) then it might be safer.
My doc says the big study about AIs after menopause or Tamox vs tamox alone is ongoing. It shows it's good for 5 years. But it's close to being at the point of reading results for 10 years and it's lookinig like it will be positive for decreased recurrence and thus become a recommendation to stay on for 10. He believes as the study progresses, the recommendation will become longer. Eventually being the 'lifetime treatment' for postmenopausal women. ???
I am just tired of adding in more and more drugs to treat se. I'm on so many. Effexor, synthroid, neurontin for nerve pain from lymph nodes out. The list goes on and on it feels like. I go Tuesday so we'll see what he says.
Can anyone tell me the difference in Femara/Arimedex and Aromisin?
Thanks
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