For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I was originally told 10 years. That was 5 years ago. The pain in my foot got so intense I was using a walker, thought I was heading for a wheelchair. Stopped the pill, pain disappeared. Was then on tamoxifen for 6 months, same thing started. MO said no more. Been off everything for about 6 months. So far so good.
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Linnyhop, have you asked for a BCI test? It will tell you if you would benefit from extended time on the antihormonals.0
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Any suggestions on what to take for joint pain? Specifically in hands and feet? Vitamin supplements? I'm already taking plenty of Vitamin D3 and calcium. I also get this weird sporadic sharp pain in one of my toes. I also have swelling in my thumb and ring finger which is probably arthritis. I don't know for sure if it's from the Arimidex since I had the thumb issue prior to starting med. Did start taking Claritin about a week ago. Thanks all
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Butterfly1234–. I started taking Omega3 and Glucosamine with chondrotin once I started taking Anastrozole. I see a difference in my hand pain on days I don’t take those neds
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Thank you DodgersGirl. How much do you take of each?
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Butterfly1234- Omega3 is 450 mg. Glucosamine 1500 mg and Chondrotin 1200 mg
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Peregrinela ~ Thanks for the quick reply. I had not heard of the BCI tests, but have been doing some research and found a thread here on BC that I will be reading through. I read SpecialK's post at the beginning of the thread and saw that she had this test done and she wrote that Medicare (I just turned 65) will pay for it. However, my supplement is Kaiser (in California), and I am not sure if they would approve it, and I am also not sure if my Onc would even order it for me. However, I plan on finding out. It is ridiculous that anyone has to beg and plead to get things done at times. I appreciate your sharing the info and I will be reading the posts on this thread as well. Linda
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My medical onc wants to talk in depth about endocrine therapy in about 3 weeks. I will be almost 1 week post rads at that point. Last time we spoke, he claimed that the choice is mine whether or not to go forward with that therapy. Also, I supposedly can try up to four different meds trying to see which would have benefit and the least SE. Would it be better if I didn't? I still haven't received detailed information about these alleged studies. (I asked several weeks ago, but they still haven't produced anything to substantiate the numbers they are quoting).
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linnyhop---It's your right to continue your meds if you want. Your doctor has to follow your wishes. If he/she doesn't, I'd get a new doctor! It's not like you're asking for opiods!
Having said that, I finished my 5 years of Tamoxifen Jan 31st. I took the BCI test and it showed no benefit from continuing. My MO strongly suggested I stop as the risks outweighed the less than 1% benefit of continuing but told me it was entirely up to me and he'd follow my wishes. I was pretty freaked out about not being on something so he suggested I stop for one month and see how I felt. If I was feeling good and not too worried any more, try one more month. And so on.... He was right. The longer I'm off, not only do I physically feel better, but mentally I feel ok with no meds. I've realized that exercising and eating right can give me just as big a benefit as hormone therapy. Ask your doc for the BCI test and see if that helps you make your decision. Oh and one more thing....my insurance denied payment. The company that does the test contacted me and had me sign a form allowing them to fight the insurance company on my behalf. So far I haven't heard anything or received and bill but they did say it could take up to a year. They also said that if in the end insurance still denied payment, the company greatly reduces the price of the test and works with the patient to charge whatever is an affordable price.
Butterfly1234---Look into turmeric for the joint pain. It's what got me through 5 years of Tamoxifen. Before I started it, I was seriously planning to stop it. My holistic doc recommended it.
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lala1 - Thanks for the info and for sharing your experiences with this situation. I didn't realize that my doctor has to follow my wishes regarding continuation of the anastrozole if I request continuing on the drug. I have 3 more refills and my Onc said that she won't force me to stop taking it. I know that I will have to discuss it with her again if I plan on continuing at that point. I will also ask her to order the BCI test. I hope that she will agree to do that for me. That is one thing about being in an HMO and on Medicare that I don't particularly appreciate..things like this seem to be in the "iffy" zone when it comes to medical tests that may not usually be done for patients. However, I will certainly be very assertive when I discuss this with her. If I were to change to a different Onc, I doubt that it would make a difference since I would have to see someone in the same network. I am definitely scared about stopping the medication and (probably in my own mind) not doing any active treatment after 6 1/2 years. I guess if I am unable to get the BCI test through my Onc, I could always call the company that provides the test to see if I have any other alternative. I live in the San Diego area and I read that the company is based here. Thanks again for your help. I appreciate it more than you can imagine. Have a great weekend! Linda
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Right now my MO is not in favor of me continuing on for more than 5 years (I have 1-1/2 to go). As for the BCI test, I read that it is performed on tissue removed from the tumor at the time. That tissue, if it still exists, is in Michigan and I am in Washington State making it a challenging situation. And I'm not sure my MO is in favor or it. But I will ask him. I totally trust my MO and will follow his recommendations.
HUGS!
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I have read a current study that says five years is enough and ten leads to more cardiac events and increased bone fractures. Though my onc said I should be on for ten years I am not comfortable with that. I am osteopenic and also have a heart murmur. And I’m taking Herceptin until August. So I’m worried about cardiac implications as well. Have an appointment with a cardio oncologist and will discuss with him. As for side effects, I get a little dizzy and nauseous off and on but that’s about it. Only been on the drug for a month though. Link to study: https://academic.oup.com/jnci/article-abstract/110/1/31/4065461
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Pontiac Peggy, I would be interested to hear what Dr. C has to say about the BCI. He had no comment about my results, but my previous oncologist had ordered it. I have read that 5 years on the pills helps prevent recurrence for 10 years and 10 years helps prevent it for 15 years. However, the latest findings said that 7 years were just as good as 10. So, as with every decision, your own tumor biology, your side effects, and age should be considered. I would definitely stop at 5 years if I hadn’t had the BCI, but now I will try to stick it out for 7.0
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I take Tumeric, Fish Oil, Aloe and MSM and have very little joint pain. I've been on Anastazole 6 weeks. My thumbs hurt sometimes, but I do a lot of typing at work and probably type too much with my thumbs on type on my phone and tablet. I do have a new pain around the right shoulder blade that feels like a muscle or tendon issue. It grabs me if I've move the wrong way. It feels like I've slept wrong. I can make it pull by turning my neck too far. It's last way longer than a crick in the neck. I'm not sure whether to blame a lingering SE from chemo, the Anastazole or old age.
I am also having 4 am night sweats like I was in perimenopause. Someone said giving up Fish Oil mad these go away, but I'm not willing to give up the Fish Oil. When I first started taking it before breast cancer, it knocked my cholesterol and triglycerides way down. Since AIs can raise blood lipids, I need to take it.
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Vivica -- yes I did start on Arimidex after two LXs without clear margins and my MX was delayed 6 months due to other issues. I was put on the Arimidex to prevent further development and in the pathology post MX, the affected area had shrunk! So not just "not spread" so the outcome was quite positive. TT
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In answer to Shell52, I do take supplements. Some I have been taking before 2009 dx and some after that and some after 2016 dx. I just started taking tamoxifen about 1 month ago, after a 6 month break from anastrozole. I think the joint stiffness is getting better, but still feel certain that the anastrozole was the cause.
D3 , I live in the NW, and use sunblock and wear long sleeves. I now take 5000 iu. I upped this about a year ago from 1-2000 IU after DR did a blood test and found I was in the low range of acceptable, I am now in the higher range of acceptable. I have some concerns since excessive D3 may increase calcium in the blood, which could cause heart problems, and am considering lowering to 3-4000 IU.
I take 500 mg C, and have taken C on/off since my early 20's.
Kelp/iodine since 2011. I use little salt in my food, by no salt added products such as tomato, and have read that most restaurants, prepared food used uniodized salt since it is cheaper.
Biotin , since 2017- 1000 MCG ( Ithink I was taking 500 before)
Tumeric - both supplements such as gaia , and the spice in cooking
Fish oil - I was taking this about 15 years ago and stopped, I have recently started taking this.
Glucosamine 1500 mg / Chonroitun 1200 mg - I recently started this. I was taking "Emerg -C " joint blend years ago, but stopped.
Calcium /Mg - For years I took one that gave 100% Ca and about 50% MG, I switched to one that gave about 100% of both. I then switched to one that was about 75% CA and 100% Mg after reading that excessive Ca can be a problem. Later I dropped the dose by only taking 1/2 of it . I eat a lot of yogurt/cheese, drink milk. Sometimes I take a separate Mg at night after one friend told me it helps her with sleeping.
B-complex. I took this for years, then stopped. I am experimenting to see if there is a cause behind frequent/urgent urination that has plagued me for years. Some B's might do this. I have tested for diabetes and pre-diabetes, both negative. I now need to test some more. Recently I was out of the county and took no supplements, and had no issues with urination. I was also drinking a much milder coffee, and less coffee. I was consuming less alcohol I was probably eating more fruit and meat, but less veggies. I started the day with an hour long bird walk instead of coffee( oh please don't say it is the coffee or wine!!).
2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands.
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Thank you for the helpful replies and feedback. Much appreciated!
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I am starting to have hip pain. I am going to try taking my anastrozole at night, see if that helps. Plus glucosumin and I may try acupuncture. Has anyone else done acupuncture or have any other ideas?
I will say that if I do some deep but passive yoga stretches for my hips that does seem to help too. I will hold the pose (say pigeon or even childs pose) for an extended time and breathe into it. I just need to do that more regularly I think.
And just when I think I'm done having to deal with this cancer...... along comes something else. If one more person says "aren't you glad they got it all and you're done with that?" I think I may scream.
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Butterfly123, You mentioned tumeric in a post joint pain, how much did you take?
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Smwusaf- I hear you! My luck runneth over...for everyone tells me it is so.
Onward warriors!
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Hi Smwusaf,
Yes, I am having acupuncture weekly, it has helped tremendously. I plan to stretch out the time and see how long I can go without all the aches and pains I was having return. I do take Claritin at night and I know that helped as well but the acupuncture has really almost eliminated the symptoms. I had a lot of hip, shoulder, back and foot pain as well as pain in my thumb joints. I was a skeptic, the studies have shown 50% of women taking Arimidex improve with acupuncture and for me it has worked. I have been doing acupuncture now for two months and I noticed improvement right from the start. I do work out faithfully, stretch and have a massage sometimes.
lumpectomy 9/16
.7mm pure mucinous, stage 1/ grade 1, Estrogen/Progesterone +/ Her-
whole breast radiation
Arimidex
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Peregrinelady, I was on anaestrole sp? for 7-1/2 years and my oncologist said that I could stop taking it, if I was comfortable with the decision. He said the studies now show 7 years is enough. I was so thrilled, it was as if the barn door blew open. I feel so much better mentally and emotionally. I'm like back to my old self.
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I too cannot handle Anasterzole, been on it nearly two years, pain in my joints and worse at night.
Unable to exercise afraid of falling due to one hip with necrosis, one ankle now and left shoulder starting with tenderness and pain. I had Her 2 +, lumpectomy stage one. Never had problem with weight or joint pain before chemo and now this terrible side effects from this drug. It’s depressing and I am afraid of being in a wheelchair
I actually stopped taking it 4 days ago.
Mauree
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thecargirl - thank you for that info. I have made an appt with the integrated medicine oncologist now and if she can make the referral my insurance will cover some of the acupuncture. I've always been a skeptic but I'm willing to try anything now. I'm going in with the belief that I'll be in the 50% who it helps
I'm not ready to stop exercising, etc.0 -
Hi, all! Just joining this thread as I've completed chemo and my MO will be starting me on Arimidex soon. I believe she said it will be a 5-year course.
Did any of you have a bone density test done before you began? I already have lowish Vitamin D levels and take D3 and Calcium/Magnesium/D supplements, along with many others.
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Margari, I believe most of us have DexaScans done before starting an AI. My MO also prescribed Fosamax for me to help prevent bone loss. I'm tolerating it well. Some women do Prolia and other bone loss preventers. I also take 3000 units Vit D3 daily. I seem to be doing well on anastrozole after 3-1/2 years. Good luck!
HUGS!
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I take this brand of tumeric that is supposed to be better absorbed, so I can take a lower dose. Higher doses give me diarrhea.
Natural Factors - CurcuminRich Double Strength Theracurmin 60 mg, Inflammation Support for Joints, Heart, and Circulation, Gluten Free, Non-GMO, & Vegan, 60 Count (FFP) https://www.amazon.com/dp/B00TJ4OD8S?ref=yo_pop_ma...
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Margari- I had dexi scan in May of 2017. All was good, so I didn't need another one before starting Anastrozole on 3/1. But they did tell me to take 3,000 units of vitamin D daily. I'm guessing they'll do another dexi scan as time goes by.
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I’ve struggled tremendously with hormone therapies. I was on tamoxifen first because I too have osteoarthritis AND osteoporosis. I’ve had numerous fractures......I couldn’t tolerate it. Now my hair is falling out after only 6 weeks on Arimidex andI’ve also developed extreme knee stiffness I will be 60 this year and if you look at pictures of me 2 years(well almost 2 yrs) I’ve aged so much. I don’t think I can do this. Very frustrating. I’d rather have neuropathy 10 times worse than I do than lose my hair. I also developed gastritis thanks to Chemo. Those meds and antidepressants (which I’m on) also contribute to bone loss (as does Arimidex). I’m grateful to be aliv however there are limits!
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Cowgirl, that is good to hear that you are back to your old self. I can’t wait until 7 years is up. Just a little over 4 years to go!0
