For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I've had 3 MOs, across the age board. They have all said one size fits all. If your MO keeps up with current research s/he is correct.
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My current MO is very current on the research so when he says something I believe him. It is very reassuring. I always have something new to ask him about that I've read in the paper or online. He takes the time to explain why it is not valid or unproved or an exciting step forward. He's a keeper!
HUGS!
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Hey there:
Just reading thru the posts. Arimidex SE for me are low back pain that comes and goes and insomnia that comes and goes. Minimal hot flashes or anything else yet. Been on it since May 8th. I must say, I do not remember to take the calcium/vit D everyday.
I wanted to comment on recurrance risk. 13 years ago I had a 7 cm tumor, grade 3, 2 positive nodes with extracellular extension, lymphvascular invasion, ER+/PR+ Her2- . I had AC-T chemo, 33 radiation, modified mastectomy with 18 nodes removed, 2 years tamoxifen, a hysterectomy and oophorectomy and then 3 years aromasin. My MO at the time said I would have stage 4 within 2 years. She said she did not think treatment would work. When I reached the 5 year mark, she said I had a 30% chance of recurrance for another 5 years.
I have not had a recurrance yet (knock on wood) but I have had a new primary in the other breast dx Feb. This new primary is stage 1b, no positive nodes, 100% ER+/and PR + (not sure what %). I had a mastectomy, SNB and arimidex. No rads, no chemo. Oncotype Dx score of 14. This MO said I have 9% risk recurrance over 10 years.
When the first MO gave me 2 years at first I was devastated and terrified. And then, after the 5 year mark, it took alot of mental strength to take it one day at a time. But as time went on, I believed I beat it. I was terrified when I got the new primary dx. But I am calmer now.
I now do not look at statistics as my "prognosis". I believe that there are too many variables - in pathologists reading the tumors, imaging specialists, peoples own biology and their response to treatment to give me a specific stat for me. And, if I do decide to look at the stats, I look at the positive now - 91% I will not have a recurrance and back then, 70% chance I will not. The odds are in my favor if I look after myself anyways.
This helps me not identify as a "breast cancer" survivor that is just waiting for the other shoe to drop. Having lived that way, I choose not to go back. It steals too much hope and joy.
wallan
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Wallan ...Thank you for your post and the hope you give.
Coach Vicky
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Hi everyone. Its hard to find a conventional MO that will test our hormone levels. This is simply because most know very little about female hormones. IMO there should be an endocrinologist or at least a gynecologist to deal with this issue. Also most naturopathic docs will test our hormones too. When they say that Arimidex is a one size fits all drug, its because there have not been sufficient studies to back up other dosages. Good luck to all navigating this complicated disease.
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Thanks CoachVicky.
wallan
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Hey gals! Finished radiation and have been on Anastrozole for about two weeks. I take it in the morning so it doesn't impact sleep. Taking Calcium/D, Glycosamine Condroitin for joints.
Here's my question... when I am waking in the morning I feel slight tremors inside my entire body.
Anyone else experience that? Any ideas?
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Robin,
When I was on the generic by GSMS, I had bee sting like feelings on my arms, head, hands.
I have switched to the TEVA brand and the stinging is gone. I still have some side effects so I am considering the brand name Arimidex.
Check who the manufacturer is on yours.
Coach Vicky
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Thanks, Coach! I am not taking a generic version. I will look into this and talk to my MO.
The other symptoms are what I expected... random hot flashes and sore joints. Do we get extra bonus points for revisiting menopause? Lo
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Hello all - I used to be a regular poster here but haven't visited in quite some time. I've tolerated Anastrozole quite well and am on my 5 month countdown to being done at 5 years (MO confirmed that for me a couple weeks ago - not recommending another 5 years
) - Oh happy day! I started hot flashes in my mid-forties (I'm nearly 56 now) and they didn't get any better or worse with this pill. I also started having insomnia problems in my mid-forties and they did get worse after the drug. However, about 18 months ago I had a sleep study done and discovered I have serious sleep apnea. With the assistance of a C-PAP device and an Ambien presecription for the past year and a half I feel like I came out of a 10 year brain fog and have much more energy than I have in 10 years also. I've had basal thumb joint arthritis in both hands for several years also and it did not get any worse until recently. I have an appointment to see my GP about new chronic pain in my left wrist. I do have achy knees and have had plantar fasciitis issues. Could these be caused by the pill? Yes. But could they also be caused by normal aging and weight gain? Yes. And could the weight gain be attributed to 'sleep eating' after taking Ambien and not climbing straight into bed? Yuppers!I have two issues that I would for sure tie to Anastrozole. 1) Within a few months of starting it I had trigger thumb in both hands. It became quite painful and caused some quite colorful language to come outa my mouth, especially when I was getting dressed or undressed. You have no idea how much you use your thumbs until it's excruciating to bend and then forcibly unbend them! Fortunately for me the trigger thumb resolved itself in both hands within a few months without medical intervention. 2) Total lack of sex drive and lubrication. DH is a peach about it and we're hoping that after Anastrozole is done I get a measure of that back. In the meantime......we cope and are closer and more communicative in general than we've ever been before this journey.
Be aware that over the course of time your SE's will likely ebb and flow and even change, and much of what you think are SE's from these wonder drugs could actually be things you'd be experiencing anyway as part of the aging process. Many/most women have few or no SE's so have no reason to be on these threads for support. Only those of us that do have SE's look for support and this is a great place for it.
I keep hearing from friends on the exercise thread that keeping moving is the best way to cope with and even relieve many side effects. So move. Do anything but become a couch potato and focus on the negatives of these drugs. Besides keeping weight at a healthy level they're our best defense against recurrence so we want to stay on them for the prescribed regimen length if humanly possible. Walk down to the mailbox or halfway down the block each day. Swim, do a few minutes on the treadmill or elliptical or stationary bike. A few sit-ups or bicep curls. Join a gym or drag out those old workout DVDs (or VHSs......lol). If you can do more, do more. Anything is better than nothing. Regardless, come join us on the 'Let's Post our daily exercise' thread for loving, humorous, non-judgmental support. Lurk for a while if you're shy about posting, we don't mind
. (https://community.breastcancer.org/forum/58/topics/741082?page=1072#idx_32139)Hang in there all - 'This too shall pass'. Stay strong, you can do it!
Love to all
xoxoxoxo
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sweetandspecial, thank you for that inspirational message. Funny, I started to have trigger thumb with Tamoxifen, but have not had it with Arimidex. I second your thoughts on exercise and will stiffen up after sitting for even a short amount of time. Trying to overcome it by moving as much as possible. It is good to hear from people near the end of taking these meds, although I have 8 more years since my onco ordered a BCI on me that says I am high risk for late occurrence, even though my oncotype score was 12.
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Vicky--the stinging feeling you mentioned--would you describe it as possibly like someone is poking a needle through from the inside out. I have this feeling in my feet about once a day. Usually in the arch area. That's exactly what it feels like, or like a deep down terrible itch that is impossible to reach. I mentioned it to my MO last week and she thought it was neuropathy. I never had neuropathy during chemo which I finished in January so I'm not sure I agree. She said to start taking b complex again which I have not done yet. It usually happens at night and it always wakes me. Last night it started before I even went to bed, lasted about 30 minutes and was gone.There's no tingling or numbness so I'm not buying the neuropathy thing.
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Perigrine - I didn't realize how much I was thinking about the 5 year mark until I asked MO straight out and immediately did a victory dance and gave her a spontaneous hug when she said 5 years was plenty for me☺. I was early stage with no nodal involvement with an oncotype score of 5 though. Stay strong 💪 and live your life. I'm reminded of this journey every time I look in the mirror nekked but other than that I just don't give it much thought any more.
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Thanks, I plan on enjoying the heck out of life and will keep taking the meds until I can't handle the side effects. Congrats to you for almost being finished
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You go girl!!!
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I recently had the Breast Cancer Index done. Unfortunately, it came back high risk for recurrence/high benefit. I was so looking forward to coming off of anastrazole this October. My side effects aren't horrible...knee pain which I've been able to manage with curcumin, vaginal atrophy which is also manageable thanks to Vagifem, Luvena and Astroglide and insomnia, but I just wanted to be done. I wanted to be done with treatment...feel like I was moving on. Ok...rant over. I will continue taking it...one day at a time grateful that I have this option to substantially reduce my high risk of late recurrence.
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I know how you feel, balance. I was very upset to be told low chance for recurrence with oncotype, then high with BCI. But now, I think I have it figured out that oncotype is more for first five years and BCI is from 5 to 15 years out. Either way, I think the longer we take it, the better. Don't know if I will make it ten years, but will take it as long as I can. Let's hope for lessening side effects as time goes on or a better drug in the next few years.
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sweetandspecial....I'm so happy you have done so well on anti hormone therapy. However it's just not correct that most of us and have little or no SEs. The reality is that only 50 percent complete the recommended 5 years due to SEs. That is a stat the my MO at a major NYC university hospital confirmed.Thats just not good enough. I'm not against it at all, but Its an injustice not to validate those suffering. We need to speak up for better treatment options! Good luck to all navigating tis complicated disease.
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Seq24, yes that needle from the inside out is a great description!
All,
I appreciate the encouraging words from those who are continuing on and completing this treatment.
I spoke with my Primary Care yesterday and said I was committed to the 5 years and the Prolia shot that goes with it. I shared that when I take the Arimidex pill each morning it is a constant reminder that I had BC. He seemed surprised at the drug being a strong anchor to me. We discussed ways to reframe this that I plan to use.
I believe (without supportive statistical data) that blocking estrogen in the body effects each of us somewhat the same and so very differently. So when we share with our physicians what are SEs are, they stumble to give answers. I do feel fortunate that both my Plastic Surgeon and my Primary Care wives are BC survivors. I believe this gives them great empathy.
Have a wonderful day everyone. I have been to our graden already. If you have not read the Dirt and the Gardening forums, please check them out.
Coach Vicky
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KB870 ... Here is my reframe that I say to myself.
Today: "This pill for for 1,725 days will keep me cancer free at 94.6%"
The 94.6% is from my MammaPrint genomic report.
Thursday I will say "This pill for for 1,724 days will keep me cancer free at 94.6%"
Today marks the one year anniversary of my mastectomies.
Coach Vicky
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I'll be starting anastrozole next week, taking it along with my other four daily pills - to regulate my cholesterol, to keep my heart beating at a normal pace, to keep my foot and ankle edema down, and to put potassium back into my body. I'll look at this pill as one more step I'm taking to be as healthy as I can be. I just picture my tiny grandson and think about watching him grow up.
MJ
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Congratulations on the two year mammo!!
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Just picked up my anastrozole prescription. My local pharmacist (a good friend) special ordered Teva for me. Since I'm flying to my daughter's for the weekend, I'm not going to start taking it until next week.
MJ
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Thinking of all of you and sending positive energy and live. I'm anout 60 days on Arimidex and doing OK.Aches and pains I'm blaming on exercising. So far SEs are manageable.
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Quick question for those of you taking Claritin. Does it help with muscle aches, joint pain, or both
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Butterfly123,
For me, yes. Claritin type drugs work. I was already on a daily dose before this journey started.
I think I have had less pain because of this.
I also think it takes about 3 - 4 weeks for the SEs to start. My MO Team does not believe me but they are not on the drug!
To All,
I saw my Primary Care this week. He did a base line estrogen test when I started Arimidex in April. He will repeat in April 2018 with this test: "Estradiol, low range quantitative to Mayo"
Coach Vicky
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Hi:
So I have developed a new SE or something and want to run it by you ladies.
I am itchy. The odd hive appears. My skin is very dry and easily irritated. For example, I always wear a Fitbit for steps counting. I have for at least a year now and it has never bothered me. Now, my skin under the band itches with a rash. When I wear mascara or eyeliner, my eyes itch and get red and skin around my eyes gets inflamed. If I have surgical tape or bandaids, I get an itchy rash. Sometimes by skin on my legs or arms or back just itches with no rash.
So, is this a SE of Arimidex? Is my skin just super dry now (it seems dry but not flaky or anything) and just easily irritated now? I have been putting lotion on my hands to see if it helps when they itch. It does help actually. This morning though I noticed itchy welts on the back of my hand (hives I think). I put lotion on and it didn't help much.
Anyone experienced this? And if so, it seems to me Claritin would help.
wallan
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When I was on the GSMS generic brand my head would itch and I had bee stings on my arms exactly 30 minutes after taking the pill. My MO said he had never heard of this.
The TEVA brand has little a manageable itch. But the hot flashes are not as often but brutal and my clothes get wet.
Hope this is helpful, Wallan.
Coach Vicky
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Butterfly: Claritin does absolutely nothing for me. It didn't help with the bone pain from Neulasta and it doesn't help with the joint pain from Arimidex. The only thing that helps is to keep moving.
wallin: Now that you mention it, I do itch like mad! At first it was the winter dry skin, then I got a cause of poison ivy and now I have bug bites. I know what you're thinking, that's not a side effect but this is not normal. I've had the same bug bites for a month now. They itched when I first got them but every time they start to heal, they itch like crazy and I scratch them open and then they start to heal and the itching starts all over. Same thing happened with the poison ivy and the dry skin. And I take Allegra every day for my seasonal allergies.
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I'm sorry to hear about this annoying and mysterious SE Wallin. It's especially frustrating when the MO or other Dr.'s don't offer ideas as to what it might be or what might be causing it. I often wonder if the MO's really know about all of the SE or care about them.
I share the link below not to alarm you, but to make everyone aware of how this fellow - an actor who I have never heard of - first learned of a cancer he had developed. He had severe itching all over.
What I've learned about SE's - and there are many which I have had and continue to experience - is to keep pursuing answers until you get what you need.
Good luck and I'll share if I read any other info on itching.
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