For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Lorraine, tell your MO----he/she will find another drug to try. We use each other as sounding boards, but you must keep your doctor in the loop they are your partner in getting past this diagnosis. Take care!
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Thanks Sloan and Pat!
You're both very encouraging.
I will hang in there and note my symptoms carefully.
This is day 28 so hopefully what I'm experiencing with my ankles, neck and word finding will go away eventually.
As far as the effect on bone loss, I'm worried. My MO recommends Prolia so I have a full dental exam scheduled next week. Since I have bilateral knee osteoarthritis, I was hoping to get knee replacements over the next year, but i hear you have to be off the Prolia for 6 months before knee surgery. I have to look into that next. These are complications I hadn't anticipated and I'm not happy. Perhaps with all the BC treatment I over the past year, I'm a little burned out medically.
I appreciate hearing your experiences-- it's so helpful. :
Marcella
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I saw this article on the BBC news website today - Healthy women should take breast cancer pill, says NICE
For those not from the U.K. NICE is the authority that decides if a drug should be prescribed within the NHS and what for. It's one of the gatekeepers of the system and works independently from the government. The article is not clear about the use but appears to suggest that they recommend Anastrozole for those at high risk of BC (and who don't have osteoporosis) not just those who have been DX. For the long term for prevention then the impact on health would be a lot to consider. Apparently it costs 4p @5cents a pill. So it seems this drug is to be used at all ends of the spectrum, from prevention through to metastasis (in my case!)
I'm just getting my head round using this drug for my recently dx'd mets in my liver. I started just about two weeks ago and seem to feel quite an improvement, and my pain is significantly better. I am not sure about the side effects, and I am worried about the effect on my osteoarthritis in my knees/hips. I have had nausea but it's severity comes and goes. .
I am so grateful for this thread as I am learning so much. Thank you all for your advice and experiences. I wish everyone continued success.
Sarah
Edited for typo
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Marcella, I've been very lucky and had no issues that I can directly attribute to anastrozole. Word searching? Yup. But I spent 5 years under considerable stress caring for my DH and also, some of it is just being over 70. Creaky in the morning? Yup. But I've been that way for quite a few years. I'm so glad to have something I can take that helps prevent BC from returning. Good luck with the Prolia and juggling everything - sounds tricky.
HUGS!
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For those who have had their estrogen level tested while on anastrozole, can you please post what the result was? I am 62 and in menopause, yet my estrogen tested pretty high a few weeks ago. I've been faithfully taking my Armidex pill since August. I am thin and don't eat soy or full-fat dairy, and don't use any hormonal creams or salves. My result was 40 pg/ml. I picked up a copy of the test result to show my new MO, whom I haven't seen yet. My gyn ordered the test.
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For those of you with gastrointestinal issues on the AI drugs, I've had great success with Aloe Vera Juice. I've suffered from gerd and gastritis since 1997, but have had it mostly under control with no meds for many years with the exception of when I was on chemo. Tamoxifen didn't bother my stomach at all, but as soon as I started the AI drugs (Letrozole) my stomach became very aggravated. On the advice of a friend, I keep a small 3ounce bottle of Aloe Vera Juice with me and sip it on and off throughout the day. I've been able to avoid my prevecid and just take a zantac in the morning as needed. If you try it, make sure to get supplement grade aloe vera processed for consumption. I use 'Lily of the Desert' Preservative Free Aloe Vera Juice. It has a slight bitter taste, but not as bad a some other brands I've tried. I needed to use it for a few weeks before I noticed any significant relief. It coats the mucous lining of your esophagus and stomach, and can have a healing effect on the tissues.
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Mooniest...I would be very interested in learning what your MO has to say about your high estrogen level while on an aromatase inhibitor. Most MOs do not test hormone levels which has always been a problem with me. Good luck and please keep us posted.
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Thanks. Will try to. I just think my quality of life at this point in my life is more important.
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I don't know whether the distributor for my Spokane Walgreen's is different from others around the country, but I was able to have them order and receive a 3 months supply of Teva's generic Arimidex with no hassle.
HUGS!
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My GP tested my oestrogen levels just a couple of weeks ago Moondust. She did say that the Arimidex is doing a great job and that my levels were low. I didn't ask the exact number but see her again next week and will ask then. I have been on Arimidex since mid January.
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I asked my onc if we needed to test nd he says no. ......
I have been taking that probiotic called Culterelle now for several months---I had a funny digestive thing that my onc said get it checked--colonoscopy came back fine, and GI doctor said take this stuff at least till Christmas. It really calmed everything down. I now suspect that my gut got upset with the tooth whitening I was doing. I was as careful as I could be about the stuff, but you know if you have used them (whitening strips) that some of that stuff does accidentally get swallowed.
For those new to Arimidex---I had some mild symptoms the first couple months, then they subsided and I was on it for 2.5 years before the foot ankle, wrist hand crap kicked up big time.
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Met my oncologist today and he is great. Very down to earth and listens to you....about your
professional background as well as some personal when it comes to bc. He is 99 & 34/100 %
sure (like Ivory soap) that I will not need any chemo or rads; however we are still waiting the
results of the oncotype to be 200% sure there are no unexpected surprises. It takes so long
sometimes to get results and I am not patient...I want it yesterday. Perhaps I am learning a
very valuable lesson in patience in all of this.
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Smurfette....Interesting. I guess that debunks the theory that "you can't test estrogen levels". Just baffles me that MOs prescribing anti hormones don't routinely do this. Their theory is you don't know if they are working until you have a recurrence. IMO that is just ridiculous!
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when I was in my early 50s I said something to my PCP about menopause she said she could do a blood test. I'd gone through it and never knew it. I was pleasantly surprised.
So as the MO handed me the script for this devil pill he said I may get some joint pain. And I was high risk for reoccurrence. Why? Your weight. Extra pounds mean extra estrogen.
But he never ordered the blood draw to check my current level. And nobody has in the past four years. It's always keep on with it. So I do. So far so good.
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I agree with everyone questioning why doctors don't routinely test estrogen levels for those of us who had estrogen receptor cancer! Powerful (and toxic) estrogen blockers are prescribed to us to lower cancer recurrence but no one doing the simple (not invasive or expensive) testing to see if estrogen levels are lowered??? I've asked every doctor I've met over the past year and asked why and not one could give me an answer.
I intend to regularly request testing and keep records of results. As I was the one who found (and insisted something not right) my tumor-- not my obgyn, not the mammogram-- I strongly believe that I need to be proactive and in control of making sure it doesn't come back. Will continue to share with this group my findings.
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It was my GP who ordered the test for my oestrogen levels not my Onc.
Maybe your regular Dr would be willing to test your levels dtad?
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It makes sense for PCP to do it. Most of us, me at least, has labs every 3 months for all the other stuff he watches. Since the needle is already in just take a bit more and run the test!!
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My PCP tests my estrogen levels every year for my annual. It wasn't because my MO asked her to, it's because I told her I wanted to keep on top of my estrogen, thyroid and Vitamin D levels as well as cholesterol and the usual bloodwork. She said everyone should be so proactive so she tests it all. Just had it done this last week and I meet with her on Monday to go over all results. My MO just runs the blood test that looks for tumor markers. And he checks my boob and my foob. I didn't have to have chemo or rads so I think I'm pretty close to the bottom of his "importance" list. That's why whenever I see him I have a list of questions or comments or complaints and I make his go through each and every one. Some doctors are just more "involved" so you have to be your own advocate.
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Hi Spookiesmom,
I find it interesting that if you're at a high risk for a recurrence due to weight, your MO didn't recommend a nutritionist or a diet program. I have a higher BMI also and specifically asked if a diet program like Optifast, Nutrisystem, etc. ( or any diet) should be undertaken to decrease estrogen and reduce risk of recurrence. My MO told me that only alcohol restriction and regular exercise were proven to reduce recurrence in the research. I've begun a weight loss program anyway.
It seems like a variety of interventions should be introduced by our MOs like weight management, stress reduction, exercise prescriptions, alcohol use assessment, etc.
Wondering what other women here are told about their weight and risk of recurrence.
Thanks for sharing..
Marcell
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tatatootsie---that is a long wait for your onc score. I remember it too. I remember the MO calling to reschedule ly appointment cause it wasn't back yet. Mine was worth the wait, I hope yours is as well. I was told if I did a mastectomy, no need for rads, and clean nodes would indicate most likely no chemo, but they did the onco test so there were no surprises.
As far as nutrition, my cancer center has a wonderful nutritionist who you can meet with for free. They emphasize diet and nutrition. I remember struggling to eat all the protein they suggested during my rads. I was not a big meat/protein person before and it is amazing how much better I felt when I shifted my diet that direction.
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Him not saying anything may have had something to do with the fact that Humana kicked the entire practice off network. I wouldn't have been covered. Current MO hasn't brought it up, neither am I.
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jpBCfree.....Thanks so much for finally validating my feelings about testing our hormone levels! These MOs are prescribing very powerful anti hormone drugs and should be testing our levels to see if they are at least moving in the right direction. The fact remains that most MOs actually know very little about female hormones. Which is why I feel either a gyn or endocrinologist should be pat of the team. IMO this is a huge gap in our treatment plan. We have to be our own advocates. Good luck to all navigating this disease.
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Hi All, I just started Amiridex since November 21, and around Thanksgiving I began to have aches in the fingers and feet. I knew it has to be the AI. I did a CT scan back in April when I were first diagnosed, result shows a lesion on the vertebrae but my OC said everyone has that. Also I have a history of degenerative disk disease so Thad's a possibility. And after my chemo with AC+Taxol from April thru September. I had UMX on October 5 with the drain and was taken antibiotic ,3-4 weeks, during that time experienced some lower back aches which radiated down to the back of both legs. My OC said its likely the delayed SE of the chemo, especially if you don't sleep correctly. I was sleeping on the couch that whole time. Now 8 weeks later and starting AI, the lower back returns when I woke up in the morning, plus the hands and feet. I kept thinking it may be metastatic. Am I worrying too much?
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Houston-the hands and feet symptoms are classic Arimidex side effects- I was 2.5 years in when mine started--first my feet /ankles then my wrist/hands, and when I told MO about the hands he instantly said it was the drug. That being said, you don't want to sit around worrying about mets, so just call your MO and ask to be seen and tell him/her your fears and ask that they test you so you can alleviate it.
Question for all the ladies having their estrogen levels checked. What is the name of the test and what is the acceptable reference range for your suppressed estrogen? I'd like to ask my PCP to order it for me in January.
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The first three months or so of Anastrozole I had only slight joint pain, but then it got progressively worse and I felt very fatigued, so after 6 months use MO swtiched me to Letrozole. Now, after almost two months on it, I'm doing much better, hardly any joint pain and I think more energy because I'm sleeping better. I'm curious if the low joint pain will continue or I'll progress to worsening pain like before. My brain fog seems to be a bit better, too. I am taking the Teva brand as suggested by others on this thread and I'm hoping this is the winner for me; so far so good. My Rx is at Walmart and they didn't seem to be able to get Teva Anastrozole, but I'm pleased they can get Teva Letrozole.
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My estrogen tested 40 pg/mL, and that is after 2.5 months of taking arimidex. The nurse who called with my result says she sees many results of 10 pg/mL for menopausal women who are NOT taking any AI. This is why I am concerned the AI is not working for me. I'll be seeing the new MO on Tuesday.
(This is from emedicine.medscape.com) :
The reference range estradiol in women varies by menstrual cycle and menopausal status, as follows:
Before menopause, estradiol levels are widely variable throughout the menstrual cycle:
Mid-follicular phase: 27-123 pg/mL
Periovulatory: 96-436 pg/mL
Mid-luteal phase: 49-294 pg/mL
Postmenopausal: 0-40 pg/mL
Following menopause: Under 10 pg/mL
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Thank you Moondust.
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are there any articles and/or HARD evidence that supports the use of AI's? in the scheme of things what is the REALISTIC percentage of good that these drugs really make? I'm really struggling with feeling like sh*t day in and day out......for what? a 2 percent better chance of reducing the rate of recurrence?
really looking for some hard facts here. they have to exist? right?
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bjbo1---Four years ago when I was diagnosed and had my first appointment with my BS he wrote me out a chart explaining all the different paths my cancer could take with numbers and such. I didn't need chemo or rads so I won't bore you with that part but he made a chart comparing Tamoxifen and AIs. So here it is.....
PROS
Tamoxifen AI
increases survival by 12% increases survival by 12%
lowers risk of recurrence on BC side by 50% lowers risk of recurrence on BC side by 56%
lowers risk of recurrence on non cancer side by 50% lowers risk of recurrence on non cancer side by 60%
Protects bones ---------
CONS
Tamoxifen AI
hot flashes hot flashes
increased risk of cataracts --------
increased risk of uterine cancer from 1/1000 to 2/1000** increased risk of uterine cancer from 1/1000 to 1.7/1000**
blood clots --------
-------- increased risk of bone loss
joint pain severe joint pain
-------- can raise cholesterol
***as to the increased risk of uterine cancer, he said the average rate of developing it is 1/1000 per year. Tamoxifen doubles that to 2/1000 per year and AIs increase it to 1.7/1000 per year.
My BS and MO are very much like me. We love to research and we love numbers. They've helped me understand a lot of this. However, I've now had a hysterectomy and am weighing staying on Tamoxifen or swapping to an AI or getting off them all together. They said basically my risk of recurrence goes down by half on Tamoxifen and 56-60% on an AI. But my MO says that those numbers are really more for women who've had chemo or rads due to positive lymph nodes. He feels my risk is only about 2-3% better on an AI and for now I'll take that risk to keep the minimal joint pain on Tamoxifen. My BS says all his patients say the AI joint pain is way worse!! And he says the fact that I exercise every day reduces my risk by as much as another 40% so these are numbers I can live with. I plan to stay on something for 10 years.
Don't know if this is what you're looking for. If you get any other numbers, I'd love to hear them.
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appreciate that lala1. arimidex was pretty awful. only 3 months, but muscle and joint pain were bad. constipation seemed to be unmanageable. stool softeners and mirilax almost every night, then an enema as well every week or 2. just a very uncomfortable way to live. took a 4 week break and in 48 hrs, the constipation was history. very little change tho in muscle and bone pain. started on aromas next. liver enzymes elevated significantly and had to see a gastro doc and have a ultrasound of my liver. to be honest, the pain was much worse as well. was on that for 6 months. took a break and began femara. within 3 weeks started itching and was taken off. they thought i may be allergic. 5 weeks now off and itching down 80 %, so still not really sure??? bottom line is that i feel SO much better being off all together . sleeping a bit better, muscle and bone pain down 75% probably. oh forgot to add......cholesterol was just 352! I am 5 1 and 130 pounds. i eat steel cut oats at least 5 mornings a week. soup or tuna for lunch during the work week and almost never eat anything fried. have been on a statin for 3 years due to family history and topped out then at 290. I'm just not me. i feel as though I appear ungrateful to be alive, but I truly understand the value. simply don't know where to go from here. made an appt with my MO for this week. i am someone who needs to see and feel solid facts and numbers. depressing as hell to be honest
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