For Arimidex (Anastrozole) users, new, past, and ongoing
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Jbakerwebb I swear my hair is thinner too. is yours falling out or just thinning? My daughter says she doesn't see it but I definitely do.
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Vivica, I am confused, have you had your surgery yet or not? Are you asking about if you should try to wait a while to see if Arimidex can shrink the tumor?? I do not think people dare try that anymore because the source of the cancerous cells, namely your mass, is still seeding the body and Arimidex even without the mass can only do so much. Anyone know of a clinical trial where this was done prospectively, or just reports of surgical refuseniks having done Arimidex?
That is not at all recommended, if so. Get the tumor out, then Arimidex, with or without radiation dependening on your individual stats like age and other conditions.
I asked my BS why we did not start Arimidex before my surgery, as there were a few weeks delay, and she said “Good question” and then went on to talk about potential increase in blood clots in legs and lungs with Arimidex in perioperative patients where there is more immobility and cancer itself can stimulate blood clots.
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smwusaf, I could also swear my hair is thinner even when I use the best shampoo and conditiomer, but I do not see more of it coming out on my comb and I have only been on it since mid-January, so I am not sure how to explain that given the hair growth cycle.
It is just somehow flatter and less poofable.I asked my long-time hair dresser and she was uncertain, said I always had a lot of hair though it was very fine, and perhaps it is thinner overall now, she has seen both tamoxifen wnd aromidex do that but also hair loss. A few years ago when I was on methotrexate for an autoimmune problem I suddenly landed up with free perms, as all my hair got curly for a couple years till I stopped.
But I am happy I still have hair, for now, unlike my chemo sisters.
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Hi all - I have been on arimidex since January 1. I am trying to stay positive and hoping the side effects will subside. My hair is thinning. I think even my eye lashes have thinned. I have night sweats and hot flashes. The night sweats keep me up at night. By mid afternoon I am exhausted. I have no energy when I get home from work. I have some joint pain but it isn't all the time. I exercise every day (walk /light weights) and I do think that helps me with my energy.
I am supposed to be on this drug for 8 years. Is there any hope of this getting better? I see my oncologist in April and will bring up all these concerns.
I had cancer in 2015 and went through it all. I just want to be done and feel good again. But I know things could be worse. I am always grateful to wake up each morning and be able to do the things I love to do still. It just makes me sad that we still have to deal with this disease after all we have been through.
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Here is how I am handling Arimidex ...
First, I have the forum "doing well on Arimiddex" in my favorites. That helps. There's lots of shared info on what women do for success with this "bitch of a brutal drug." That's what I call Arimidex. I don't believe anyone could talk me into a day past 5 years.
Second, this is how I am now. It has taken almost 2 years for me to stop looking for the brunette with blonde highlights that I once was. Gone are my Daddy's bushy eyebrows that I had to get waxed every so many weeks. I have just now started to get my nails back.
That is what is has been hard for me. I thought in the beginning that when I finished X (sugery, chemo ...), I would "return" to me.
I am a different me. My hair is not as thick and I fear ending up with frog hair or bald. My nails are not as strong. My hands get stiff and hurt.
I am a different me. I am ALIVE. I am cancer free. That is how I am dealing with this drug.
I hope this helps in some way.
Coach Vicky
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Thanks Coach Vicky, I'm just starting to realize this is not over, no matter what other people think. I need to get used to the new me and deal. also, thanks for the other forum suggestion. I will favorite that as well.
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smwusaf ...
Happy something could help.
Here is the other thing I realized. When I rung the bell after chemo, I thought it was over. I have 4 years of oral Rx and 2 injections every six months.
Like you write, it is not over.
So when "friends" talk about it being over, I reply that I will be in treatment for four more years.
Coach Vicky
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Something that happened with me- I have been trying the 13 hr. fast. Because of this I was taking my Anastrozole on an empty stomach. I started feeling really awful, like I had been hit by a truck. When I went back to taking it with food, I felt better. There may have been other factors, but I will never take it on an empty stomach again. Also, I have been gluten intolerant for 10 years and I think not eating gluten is better with this drug, for some reason. Maybe because both gluten and AI’s can increase arthritic pain.0
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Peregrinela, I do timed eating, Intermittent Daily Fasting, with a 16-18 hour fast. I take my anastrozole about 11 -12 hours into the fast and don’t eat until 5-6 hours after that. Vitamin D was much harder on my digestive system than the AI. (I quit taking the vitamin.) And I’m definitely not gluten free or low gluten. Yes, I’m achy but that’s something that comes with reduced estrogen, isn’t it? I felt that way long before BC. Exercise has been the my best remedy for joint aches. No pain unless I’m sitting still for long stretches of time.
Of course I recognize it may be different for everyone else.
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I think there is a gluten and Arimidex connection also. DH and I are about 95% gluten free. On the few occasions I have gluten, I tend to swell more and hand joint pain.
Thanks for bring this up.
Vicky
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Yesterday I went for my first run in a long time. I used to be an avid runner but health issues (not cancer related) kept me from running for quite awhile. I missed it! So I went and ran 3 miles. It felt great! I had energy for the rest of the day. I found a piece of my old self again. Exercise is the key (for me) for feeling well. It helps my mood and my energy.
I do agree -I have to get used to the new me. Accepting all that has happened and moving forward. I am fortunate and grateful for so much. Happy Easter/Happy Passover everyone!
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I was driving yesterday and the song "Tell Your Heart to Beat Again" came on the radio.
Here are some of the lyrics:
"Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again"That line "you don't live there anymore" really hit home. I do not live where I was before breast cancer. In so many ways I am in a much better place and I have a great new rack. I just want to remind my "heart to beat again" and to a different beat.
Coach Vicky
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Thanks for sharing the lyrics to that song. It’s very timely
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Thanks, Bella ... it was a wake up for me.
Coach Vicky
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coachvickey---Thank you for that. It describes me exactly. I'm a very different person now since BC but I truly feel that I am a better person.
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Love those lyrics! So many wonderful things have happened to me since my BC diagnosis. I have made lasting friendships. I trained and ran a marathon while undergoing treatment teaching me that anything is possible. It's a wonderful life. I sometimes can get caught up in the little things but we are all truly blessed to be here today. Every day I wake up grateful that I am not in pain and I can do the things I love to do. Onwards warriors!
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WOW Ladies!
What testimonies to beating cancer physically, mentally, and emotionally!
Coach Vicky
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CoachVicky - Just expressing my thanks for those lyrics, as well. They surely resonate with me.
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Chiming in Vicky to also say how those lyrics resonant with me too. We are warriors!
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smwusaf - So far, I have found acupuncture good for stress, and relaxation. Maybe getting some relief for joint pain/stiffness in hands, from the arimidex (took for several months, quit,then after about 6 months, just started taking tamoxifen). Still experiencing stiffness, especially in morning, and some trigger finger. You might also check into physical therapy for hip pain, there are stretches/exercises they can show you. Check post from people who switched to a different generic or even to the brand name, and found it helped. Don't quit exercising. Maybe change what kind/when/how much, but I think exercise/activity is fundamental to health. Biotin and B vitamins might help with fingernails and hair. After the bi-lateral, I used product called Juven Therapeudic Nutrition Powder (7g L-Arginine, 7g L-Glutamine / serving) for about 1 year , in hopes that it would help with healing and reduce scaring from surgery. Definitley noticed growth and strength in nails, and possibly hair. I did cold capping during chemo. I lost a lot of hair, but my oncologist and surgeon were impressed with how much I still had. Impressed enough they suggested that their facility offer it. I was the first patient they had that tried it. Juven makes a lot of products, this is the one I used, it comes flavored and unflavored. Spendy, my insurance did not cover, but I had enough medical that year to deduct from taxes and included it. https://abbottnutrition.com/juven
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
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. Started tamoxifen March 2018.
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BlueGirlRed - I also did cold caps and kept my hair although it thinner a lot. It came back nicely with the help of biotin. It took about a year and a half for my new hair to catch up to old hair. Now on Arimidex and it is thinning again - sadly. But hoping it won't be too much.
Tamoxifen was much more tolerable for me. I wish I could stay on it but not in the cards.
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Quick question for all the Arimidex ladies: Do we all take 1mg tablets? Seems that is what I hear....does anyone know why the does is one-size-fits ALL? Seems odd that nothing differentiates one woman's dose from another. Would love your thoughts!
Also, has anyone tried any of the other AIs like letrazole RO exemerase (sp?)? If so, what was the differences between the AIs if any?
Thanks in advance for your thoughts and input!
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MamaFelice - I did arimedex (Teva generic) for about 6 months. In the beginning, I woke up with a headache every morning but it went away quickly. At about 5 months, I started having headaches which lasted all day and didn't respond to any of the usual over the counter pain meds. MO switched me to Femora in Dec. and so far I am pleased. Joint aches and pains but I am 72 and had arthritis before BC. Exercise helps. I play 9 holes of golf 2-3 times a week, go to stretch and flex class and walk our dog. The day I was most miserable was the day after I did nothing but sit on the couch all day! Learned my lesson on that one.
The short answer to you question is that we respond to these AI's differently. You will find people who will report just the opposite of my experience. Fortunately, I have a MO who has worked with me from the beginning to minimize my SE's. I hope you do too. And don't get ahead of yourself in anticipating problems.
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I have a friend, actually a former high school teacher of mine, who takes letrazole. She says periodically she has to switch to Anastrozole when the SEs from letrazole become unbearable. I’m not sure why doctors pickone or the other.
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MamaFelice - It is all so confusing, hopefully your DR is one that you can talk to, answers your questions, and help you make decisions that are right for you. Not everyone gets SEs. Some on this site report that SEs got better if they took a different generic or the brand name. I do not know if I made a mistake by stopping arimidex. Maybe I should have switched to a different generic, or the brand name, or a different AI. There does not seem to be any way to measure the effectiveness except maybe by comparing recurrence in those taking tamoxifen vs arimidex vs one followed by the other vs or a placebo vs nothing at all. There does not seem to be a way to monitor individuals to see if the hormonal therapy is working for them. Maybe I am skeptical, because chemo was not as effective as expected - there was not much change in the tumor size. I did an oncotype test prior to chemo, the results suggested that chemo should have been more effective.
Arimidex seems to be the drug of choice for post menopausal, because it is more effective than than tamoxifen I was told that the ovaries in pre-menopausal women produce more estrogen than arimidex can block, so tamoxifen is prescribed. This article describes the "fog" in treating breast cancer http://blogs.cancer.org/drlen/2016/06/06/aromatase...
This article describes how 25% women discontinue hormonal therapy, due to side effects, but that those who do not take hormonal therapy have a much higher incidence of recurrence. (Although the above article suggests is is not that clear) http://www.breastcancer.org/research-news/not-taki...
So AIs blocks aromatase which reduces the estrogen produced elsewhere in the body by post menopausal women. https://www.arimidex.com/about/how-arimidex-works....
For ER positive breast cancer tamoxifen competes with estrogen for receptor sites. http://www.imaginis.com/breast-cancer-treatment/ba...
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
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. Started tamoxifen March 2018.
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your advise is always helpful Coach.. are the injections for prolia?? I have been putting off any osteo drugs
As for the the arimidex, Im on the real deal, I take it in morning.. mostly Im stiff when first getting up but that eases as I start moving, my hands get stiff i do get some night sweats
But i try to walk and exercise each day between work and work(home) lol
I do think it has slowed my healing down.. from chemo surgery and radiation , its hard to tell ,
But my hair is definately thinner than it was , its finally looking better , about 5. Inches!! All wavy like it was before and my eyebrows need filling in with pencil , im just glad most of the brow hair came back , even if sparse!
But as you girls say its the new us
And coach great line! "Im still in treatment for 5 more years , alot easier to say.. and gets the message said we are still dealing...
Glad to be alive!!💕
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MamaOz.
Thank you.
I had my first Prolia injection in September. I have another scheduled in April. My former MO told me to increase my calcium and vitamin D two weeks before injection and one week after. Unfortunately, he didn't tell me how much and afterwards I discovered I took too much. However, I had no side effects from the injection. Not sure what I will do this time.
I have a cousin who said that rosemary oil grew her hair back. Her loss was unrelated to cancer or cancer drugs. I have ordered some rosemary oil. I am going to give it a try and let you know if I see any difference.
All,
I am seriously considering the semi-permanent eyebrow tattooing. What say others?
Coach Vicky
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Eyebrows - I had a girlfriend lose all her eyebrows not from BC but we think thyroid issues. She's had microblading and to be honest, if you didn't know it, you'd never know it. Her eyebrows look like real eyebrows.
She had tattoo eyebrows years back, but the microblading is newer and looks great. Good luck ladies!
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Hi ladies:
SE of anastrozole - I do not get joint pains. I have been on the pill for 10 months now. But, I am starting to get shooting pains and loss of strength in my hands and ankles from time to time. And, my brain is fuzzy. I am talking and I lose track of the point I am making. If I am concentrating, my brain seems to run out of steam and I feel mentally fatigued. This is new.
Plus, I get migraines when the weather changes, including vertigo if I am overtired. And my membranes are dry. Eyes, skin, lady parts.
I do feel tired alot, even after 7 or 8 hours of sleep. I started taking the pill in the morning to counteract insomnia. It did help.
So, do others have these SE? I was on Teva-anastrozole and then it switched to sandoz-anastrozole a few months in. I talked to the pharmacist about this and they insist there is no difference in the pills and different generic brands will not make a difference. I am in Canada, and you get what you get here.
I told my Nurse practitioner last MO visit about my migraines and vertigo and she ordered a brain MRI which I just had. I find out results this coming Friday, April 6. Last summer my migraines were so bad, my MO ordered a head CT scan which was normal. My GP says the migraines are likely hormone related and treated them accordingly.
So... any one else have these symptoms and what did you do?
wallan
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Back to eyebrows. I missed mine more than my hair! I have had a semi-permanent ones for years. In fact, one of my treatment regrets is that I didn't get them redone before I started treatment. I've seen some good microblading that friends have. Check the difference in cost and how often they need to be redone if you are considering both. Also, the woman who was recommended to me to do microblading wouldn't do it until I had finished herceptin. Said she had called the drug company in making her decision. So be certain your technician knows where you are in treatment.
I think my joint pains are age related. Just bought a new fitbit to get me moving more.
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