For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Chats, I really appreciate your post. It's very reassuring. You're right, we're very similar in our stats.
I have been on all 3 AI's over the past year and a half and in between each one I take a few weeks off. This is the third time I've tried anastrazole. I was off from July 14 to Aug 21 and I've been on ever since.
My drs all agree that it's best to stay on the AI's. But somtimes it's just not tolerable. I've had all of your se's and more at various times. This time around, for some reason, the only thing I feel is ankle pain, in the back, by my achilles tendon. Never had this specific symptom before. However, you mentioned depression. I had a terrible fight with my husband on tuesday and have no spoken to him since. I do feel very depressed. How does one ever know what causes depression? I feel strongly it's my husband but I hadn't considered the effect of the pill. We'd been getting along fabulously until Tuesday.
Glad to know your onc isn't worried about minor fluctuations in Calcium either. I tried setting up a chart too but couldn't figure out how to do it exactly. I keep all of my lab work too. The kidneys are supposed to get rid of the excess calcium so it stays steady in your blood. I'm on spironolactone for blood pressure and that can effect kidneys. I don't take calcium but I was wondering if the anastrazole was leaching calcium from my bones, if it would show up as high calcium? I need a bone density test, something I've been procrastinating about.
Thank again for your thoughful post, it really helped calm me down!
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Timbuktu - The way I chart is this - on a Word document page - Calcium under that the date of each test and next to it the value given, then Glucose, under that...and so on. It makes it easy to see fluctuations. then save the page and add to it each time you have a blood test. I list all the important stuff like White Blood cell count, Red count, Enzyme count etc. Interesting was the RDW and MCV which were inching up and I looked it up - anemia. Guess what. Arimidex causes anemia!!! So the fix is to take B12, folic acid and in my case also iron.
Believe me, the depression is attributable to Arimidex. Not that husbands can't be aggravating from time to time. Mine was coupled with the lack of interest in doing anything. AND, I was so volatile that if somebody said something I didn't like I was an unleashed mountain lion. I told my husband at that point to be careful what he said to me because I was very unstable. That was part of the reason I took a month off. Since I have only been back on a few months and have lowered my dosage I haven't gotten to that particular se - yet. I have read many posts that it builds up and takes a while to kick in with the worst junk, some say six or seven months and then it gets bad. Read Natsfan's posts on the subject. Her stats are similar to yours and mine.
Go to your husband and look into his eyes and ask him to understand that you are taking a drug that can trigger some pretty strange mental and emotional states. Kiss and make up. I have had to do this myself and its way better to have a good co-pilot on this journey than to not.
Kathy
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Sooo...
Saturday will be six weeks since I went off Anastrozole.
My BP has gone from a high of 177/100, to 150/90, then with the help of a diuretic, to 122/74.
I've gone from being in constant pain, limping around with a cane, to feeling like Wonder Woman. DH and I cleaned out our rock pond and waterfall a few weeks ago. I was climbing that waterfall like Spiderman, and standing in the pond tossing big rocks out onto the lawn.
I put on my Rosie the Riveter outfit (overalls, Tshirt, and bandanna) and we started cleaning out the garage. I was hefting all sorts of heavy items.
Monday, I was late for an appointment at the hospital. When I realized that 1) the elevators were too slow, and 2) the woman next to me who was hacking and spewing and coughing up a lung would be sharing the same small space with me, I hauled my butt up four flights of stairs!!! I wouldn't say I "ran", but I definitely kept up the pace.
Today, I pulled weeds and dug up plants in the front yard. In the back yard, I used the heavy electric hedge trimmer to cut back and shape all the podocarpus trees along the fence.
Two months ago, I couldn't even make a fist!
The "lady parts" issues have resolved, amazingly quickly.
The trigger thumb is gone; the trigger finger turns up once a week or so.
But the biggest difference, in my opinion, is the fact that I actually want to get out of bed in the morning. In fact, I've been waking up before my alarm goes off, instead of sleeping til almost noon. It's like a huge weight has been lifted off me, and I can see into the future, where I might actually be able to participate in my life instead of feeling completely disabled by pain.
Still haven't had much success losing the 20 pounds I regained after the AI, but at least now I can work out (water aerobics, walking, and biking) again.
And yet - I feel torn about telling the MO I don't want to go back on Anastrozole, or try another AI.
On the one hand, I feel like I want to make every effort to take advantage of the drugs that are available to me. (They aren't appropriate for every woman with BC.) I don't want to think that in the future, I may have a recurrence, and that I SHOULD HAVE sucked it up, and just put up with the pain and other SEs, and quit whining.
There are plenty of sisters out there who are truly grateful for just another day on this earth.
But I want to have SOME quality of life. When I'm too depressed to get out of bed because as soon as I do, I'll start hurting.... when I turn down every social invitation because I don't have the physical or emotional energy to actually get dressed, put on makeup, and go socialize... when I leave my husband on his own, and make no plans for small outings or short vacations, then what kind of life is that?
And I REALLY don't want to take 8 different prescription medications to relieve the 8 major side effects I have. That just doesn't make sense.
At what point do I look at the stats and say "because there's a 1% chance of a recurrence, I need to be on a drug for four more years." OR - "I believe I will be in the 99% of women with my diagnosis who will have no further cancer."
I just keep having these conversations in my head, planning for the conversation I'll have to have with the MO on October 11th. I'm praying for guidance a lot these days!
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Blessings - your pathology is good. Assuming you are past meno, you wouldn't have much estrogen left anyway. I have been reluctantly on it due to the positive lymph node status for me. As far as I could tell from the massive amount of headache inducing research I have done, the bottom line is that some will recur and some will not, whether you take the drugs or if you don't. So it boils down to hedging your bets. Nobody can give me a 100% guarantee that taking this junk will actually prevent recurrence or mets. The best they can say is 50/50.
In the end I believe you have to listen to your inner voice, the one that knows what's going on inside your body. Meditate on it, pray on it, and go with what you absolutely feel is right for you. That's what I am trying to do myself.
Kathy
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chatsworthgirl - just remember that estrogen is also produced by your fat and adrenal glands. Thus there is circulating estrogen even in women who are menopausal.
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After menopause i don't think it's that we have a lot of estrogen but we have a mechanism to turn another enzyme (I'm so embarassed that i can't remember the name) into estrogen, The AI's are inhibitors of that mechanism. Like a switch that is turned off. I think even on the AI's 2% of the estrogen is still there.
I think we all understand only too well blessings. Too well!!!
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Aromatase inhibitor! OMG, another SE! No memory!
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Bayou, at the start of my chemo I asked for a reading of my estrogen levels. The onc said it was below 12 undetectible. that's basically pre-puberty levels. I asked him to check it after I had been on Arimidex for a year. He said why bother, it would be undetectible still. Yes we do produce estrogen even after meno but it is apparently very little. According to my Onc even very little would feed the cancer. So no matter what you do, even if you take AI's you still have some estrogen running around. Since estrogen is essential for bones, brain etc., if you did away with all of it, made it zero, I shudder to think what life would be like at that point.
I asked the Onc at the outset, before I even went into chemo (I had total mastectomy) if I did nothing further and it came back, when would it come back based on my pathology. He said if it did I would be in my eighties. Honestly, if you calcualte the average life span, if I made it to 85 that would be pretty good.
I'm not suggesting anyone not take AI's. I'm just struggling with the issues of side effects and weighing the pros and cons - trying to figure out what is best for me.
By the way, I tried DIM and it made me hurt worse than the Arimidex, also gave me a headache.
Kathy
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Kathy - I am glad your MO tested your estrogen levels. Mine doesn't unfortunately. My Femara is making me miserable. I am stopping it when this bottle is empty, waiting a few weeks, and then plan on trying arimidex. Hoping for the best! Just curious, did you have an oncotype test?
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I'm post menopausal...since this time in 2000, yet the tumor was 95% ER and 35% PR. I was amazed. I would have thought menopause had shut it all down.
Paula0 -
Bayou, no oncotype because I was node positive. Only given if node negative to see if you can bypass chemo.
Soteria I have been post meno for twenty years and my ER was in the 90% range and PR 80%. It's all a mystery to me as well.
Kathy
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Interesting Chats. Sounds great that you have so little estrogen. What is DIM?
My mom got breast cancer at 65. She hadn a mastectomy and no other treatment. In her 80's it came back in her lungs. They gave her Tamoxifin and the tumors shrunk. She didn't die of the cancer, she had everything wrong with her, but breathing was so difficult. If there is any way to avoid what happened to her I have to think it's worth it.
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Chats, I had plantar fasciitis for more than a year, the result of wearing flip flops and standing on hard tile. My podiatrist told me to wear only FitFlop sandals, and he sent me to physical therapy, where I did roll my foot on a frozen bottle of water, plus slept in a boot, and did exercises to bend the foot backward. Some of that you can try at home.
Good luck!0 -
Timbuktu - DIM is a plant compound made from cruciferous vegetables. It is supposed to help with estrogen metabolism. No human trials as yet but in in vitro and in vivo studies it is shown to prevent cancer. However, if you take large amounts it can cause gastrointestinal issues and headache. I took one pill and also the Arimidex on the same day and it made me hurt and gave me a headache. Maybe if I just too the DIM.
The ladies on the alternative forum take DIM instead of AIs. I bought it because I am considering just taking DIM. Haven't quite worked up the courage yet.
I will try to hang in there for a while longer. Will take my pill starting tomorrow again.
Kathy
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My MO said I was high risk for recurrence. I have 1 ovary, nothing else. Asked why? He said my weight. I am very fluffy. Who ever said the adrenal glands and extra pounds are a contributing factor was right, according to him.
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Spookie~~Our dx and treatment are so similar, and I too am fluffy.
Paula0 -
Wow! You're right! 😃
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Spookie.. I love the fluffy!! gonna get alot of miles out of that line.. thanks.
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Chatsworthgirl – thanks for the reply. You understand perfectly. Yes, I’m 16 years post-menopausal, and 15 years post-hysterectomy. I tried to argue with my MO about having no estrogen in my body, and she kindly pointed out that it was manufactured in body fat. (That’s when I went on a medically-supervised fast and lost 60 pounds. I hear you on the headache-inducing research...
That’s why I don’t do it anymore. I have to go with my heart on this one, just like you said. (BTW, my tumors were 100% ER+.)~~~
Ladies - Re: ER+ and “circulating estrogen” in the body… SpecialK has written several very good posts about this process on another thread. Take a look at her explanations here:
http://community.breastcancer.org/forum/78/topic/811444?page=1#post_3717599
~~~
Thanks, Timbuktu! You haven’t lost your memory…. You are just so wise that your internal hard drive is full of wisdom, and won’t allow any new information to be added. (That’s my story and I’m sticking to it!
)~~~
Soteria – I always wanted some Crocs, but when I tried them on, I could tell immediately they didn’t have enough support for my poor feet. I like Mario Batali’s orange Crocs!
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OMG! I love the fluffy comment - I am fluffy too - however, after the treatments and now on this medicine, I am fluffier! I hate this medicne and feel like it really drains my energy but then I think about the reason I am taking it, and just keep on taking it.. Its been 2 months now and the aches and pains are still here..I am hoping my body will get used to it and the SE will go away.
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Hey, guys, those of us who are fluffy (me too) manufacture estrogen and circulating insulin, neither of which I understand, but both of which are why we take arimidex, which reduces estrogen. As i understand it, DIM kind of balances estrogen. which is absolutely not the same thing as blocking its manufacture. I don't think those nasty little cancer cells care whether they're gobbling up balanced or unblalanced estrogen, and I want my body to make as little of their main meal as possible, so it's arimidex for me. I'm interested in DIM as an accessory to arimidex, not an alternative, will ask my onc what he thinks.
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Thanks blessings, I would say I'm going to use that line in the future but I know I'll never remember it!
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Hey Tim - you could say what I say about my brain.......I need to defrag and delete cookies and temporary files. Sure would be nice if everything in my head could stay organized and non-essential data be purged!
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yeah, me fluffy to! I do like calling it that~
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Ahem! You can say that sweet! I have no idea what any of that means!
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Chats: I am post meno as well. Er Pr positive. I have been doing research on the DIM. I could not take Arimidex so I am now on Aromasin (4 weeks now). I did read an article where you should not take DIM with Arimidex, Aromasin or Famera. I did see where you could take it with the tamoxifen.
I have been considering taking DIM as well. I want my Onco to test my Estrogen level. I wonder why it is that they don't want to do that in some cases?0 -
I've also asked to have my estrogen tested and they refused. I don't get it. It would certainly be reassuring to see that it's low.
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Timbuktu - hahahahaha! I'm not a techie but I can tell you this - When data is stored on a computer hard drive (aka: its brain) it's not necessarily stored all together. The computer stores it wherever it comes across space. If the space isn't big enough it stores just a piece of it and moves on to find more space, and so on and so on. Picture a 1000-piece puzzle where every piece is stored in a different little drawer in multiple storage units spread through every room of your house. When you run a defrag on the computer it reorganizes all those fragments so that what were previously 'frag'mented are now all together. The computer speed improves because it doesn't have to search a gazillion records to find those 1000 pieces to a single puzzle. Does that make sense? I just feel like the contents of my brain are fragmented all over the place and a defrag would be very welcome to pull it all together again
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Chinneymae - my Onc said it didn't matter if it was a teaspoonful it would still feed the cancer. Well, apparently even with all the drugs, there is still some left floating about so you can't eliminate all of it anyway. I argued with him but he stands by the protocol that is the current treatment. End of argument. The best I can hope for is that mastectomy, chemo, radiation and now this drug will be enough to prevent any recurrence.
If you want to have your estrogen levels tested you need one of those naturopathic doctors and they do a 24 hour urine test which is the most accurate.
Yes, I made the mistake of taking the DIM and the Arimidex on the same day. Not sure I will take the DIM again Until they do human trials, the in vitro and in vivo tests really aren't conclusive. However, there are those who believe the problem is not estrogen itself but an imbalance so they take the DIM in order to achieve that balance. Suzanne Sommers takes bioidentical hormones because her naturopath is one of those who believes the balance thing. However, she had a very small tumor, had a lumpectomy, only did radiation (which she later regretted) and never did chemo or hormone blockers. Why did this work for her? Who knows? Luck of the draw.
Blessings - I burned out on research as well. All it did was make me think and worry about this way too much. I go for long periods of time not posting or reading posts for the same reason. Recently I had to deal with the bone and joint pain and of course started researching and reading here as well and got extremely worried. Had the xrays and grateful to find out I worried for no reason.
I will always respond to private messages as I am alerted to them in my email.
It's a beautiful fallish day here in Chatsworth, CA. I think I will go outside and do a little gardening or go for a walk with my dog. Adios good women - live long and prosper!!
Kathy
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sweet, in my book you ARE a techie! Thanks for explaining, I feel a little more 21st century thanks to you.
I always say my brain feels like a bunch of bubbles. Just when I'm reaching for a thought the bubble pops.
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