For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
Good morning and if you celebrate may you have a happy easter happy pesach happy holidays!I am a 48 young minded progressive breast cancer survivor/thriver since I was 8 yo, i have exercised daily, former bodybuilder of 2 years, currently lift weights daily,practiced yoga meditation since I was 8 as well and since 2009 Integration Based Stress Removal daily, eat low estrogen clear of pesticides etc diet, who had lumpectomy, rads, chemo (TC) oncocotype 26, mamma print 29% and started on tamox was on it for 3 months/gave it my all and had to get off due to SE's. I had horrible, horrible night/day sweats. mood swing of deep deep lows and some highs, insomnia. fatigue. weight gain, bone pain, stiff, weak, especially legs, cording, low/no libido, dry everywhere. NOW i am off of tamoxifen for 4 weeks/(now in week 2) to see IF chemo has put me in menopause? HAD estrogen blood work to confirm and now I am in menopause due to?? but THEy wish to rule out what are my SE's that I am having? are they from the tamoxifen or did the chemo induce menopause? I feel so so so much better BUT I see my MO on 4/17 to discuss AI's-ugh. Based on everything so far I am terrified of going through this again. I explained to my cx team that I did not want to go on hormone treatment of any kind if at all possible and based on PMDD that I was more scared of the SE's from the hormone treatment following my chemo than the chemo. Anyone have any advice, comments, or suggestions? Mood, weight gain and bone pain are my biggest fears. I prefer QOL over existing and not being able to enjoy my family NOW. What would you do if you were me? NOW that i am in menopause Can I have a mastectomy? Can I have my ovaries removed? Vs going on an AI? what might the benefit be? what might the SE's be if i can do surgery route?
Thoughts, comments, feelings thank you all
0 -
If you are in menopause then try Arimidex. You can always switch to another one or go off entirely if you have bad side effects. Most people I know who've made the switch from Tamoxifin feel ALOT better (especially they were not as hot flashy).....but, of course, everyone is different and you won't know until you try. Life style alone can reduce the chances of recurrence, but as you know, isn't the only factor (or you wouldn't have gotten diagnosed in the first place!). Having a mastectomy or your ovaries removed won't make any difference as to whether or not you should take an anti-hormonal.
My own experience: I was a little achy at first, but I exercise a lot too and just kept doing everything I usually did and after about 6 months my body adjusted and I was fine. It didn't alter my exercise routine at all, in fact, I exercise more now than I did going in. I didn't gain any weight (probably because exercise keeps your metabolism up) unless I ate too much....I didn't find it any harder or easier to lose weight either. I think the whole experience messes you up emotionally for awhile & then add chemo drugs and no-estrogen, and, yikes, it takes time to rebalance. But my mood was/is fine, quality of life is great, and I very happy if Arimidex contributed to the fact that I am still around today!
0 -
Good morning all and a blessed Easter. I am now 2 years into anastrozole and 2 1/2 years since my Sept 2012 diagnosis. I was osteopenic prior to BC due to parathyroid disease and was on fosomax 5 years prior to BC. I have annual density scans which confirm my continued osteopenia which increases in hips and decreases in arm....basically moves around from year to year but constant. I convinced the endocrinologist to stop the fosomax after 7 years of it. After 5 it can cause other problems with the liver etc. I was able to half my simvistatin in January due to cholesterol of 125..(I didn't even know it went down that low?) Typically it had been around 175 with med. Bloodwork next month to see how it has held up with half the meds. Before BC I weighed 180, 5 ' 10". After chemo and into rads I was down to 175. I half moved up to 188 but have fought hard to not gain the weight back to my high of 210. Today I am at 181 but it is a constant battle.My bones hurt when I sleep and I constantly have to change positions to not put weight pressure on hips and thighs, where it hurts during sleeping. I remember this osteopenic pain which led me to my parathyroid diagnosis years ago. I am stiff when sitting for a period of time. No significant hand issues. I walk alot at work, walking the halls of an elementary school to pick up children for services. I think this walking during the day helps alot.A new bone density due in May so I hope all is constant. I do not go to the gym, although I know I should do weight bearing exercises. I rarely walk outside even though I intend to.
Having my 6 mos CT in 2 weeks to monitor no cancer recurrance. In these 2 1/2 years this will be my 5th CT and I have had 3 PETS. I get nervous about having them but always am relieved when the results are clear.
Jmooo: From what I have read, heard and learned from my Onc, our bodies continue to make hormones even after menopause, hysterectomies etc etc etc. Hence the need for AIs.
We all have to make choices on our medical treatments and it seems we all react differently to the same treatments. We move forward, we make the decisions that are right for us and have to put it in the hands of God.
May you all be safe.
0 -
on't know what to say to those of you who are too young to be in natural menopause and I don't understand "chemopause" as I've read on these threads where gals were on the AI's after their "chemo" and then they got their periods.... Having had a hysterectomy several years pior to b.c., I was placed on Arimidex after my radiation. I had next to no physical side effects I could feel--at my 9 month check up, we realized the drug was pushing my cholesterol above 200 and my AST and ALT Liver #'s were slightly elevated. As a trial, I was switched to Femara, which lasted 5 days! I have never hurt so bad or so constantly in me life! And now I am 1 week post Femara and still having the pain! I am going to go back on Arimidex on the 12th and my MO and I will add cholesterol to what we monitor.Don't be afraid to try, and don't be afraid to try another one, as we are all different. Some of us can tolerate one, some of us another.... I now know I will never be able to take Femara, but there is always Exemestane left for me to try, and there is also Tamoxifin. So I figure If I can get 5 years in with some combo, it isbetter than none... And if I try all of them and fail, I will know that I did all I could...
0 -
I took arimendex for 18 months following my breast cancer treatment. Finally had to go off. I had every negative side effect. Bone density plummeted, developed "hammer" fingers, water retention was enormous, bone pain made it excruciating to climb stairs or get in and out of car. Just 6 weeks off drug all symptoms went away. Now dealing with tamoxifen. Side effects not so bad so far. Has anyone else had these symptoms?
0 -
Welcome to BCO Janjag. Glad the SEs from Arimidex dropped away so quickly and best of luck with Tamoxifen.
The Mods
0 -
I am just about completing my one year on Arimidex, after three years on tamoxifen. Had a bone scan in December 2010 before starting chemo. All good. Had a bone scan in 12/2012. Some drop but still normal. Had been on tamoxifen for for 18 months at that point.
Dexascan in 2014 and my MO said keep taking calcium. The substitute ONC said I was osteopenic in two spots and to get a Prolia shot since I was on arimidex. So I did.
The new onc agreed but said to get another dexascan this year and next, as in general arimidex has the most bone loss the first two years then tapers off. We have Unied Health Care also, and whenI talked to them, they said annually was fine. So, ill get one in Decemberthis year
Im going to give in to a steroid injection for my wrist I think, but I do attribute this problem to the arimidex. Too many coincidences when I do the research. And I wonder...where does it stop and what area is next?
And....just how bad is it going to hurt
0 -
fluffqueen01,
The steroid injection for your wrist? Is that what you wonder will hurt? If you get it shot with lidocaine first (the "air gun" shot is painless), then the cortisone shot doesn't hurt. I had it in my thumb and was pain free for the first time in months.
0 -
Thanks all for the info about taking a bone builder vs. not taking a bone builder. I trust my MO and NP, so I'll relax for the time being and keep up with weights, yoga, and running/hiking/spinning. I'm lean but not thin and not petite: I'm 5'8", so all signs seem okay that I wouldn't have problems from arimidex. At least not those...
0 -
I won't reiterate what happened to me on Ax but reading some of the more recent posts in the last few pages I am deeply questioning trying another AI or not. QoL is extremely important to me and all this business of what these AI's can do to bones and how people feel on them gives me pause.
(I am waiting to go see my 3rd onc btw - I have received some of the worst care from them - don't be afraid to switch if you feel ill-treated. Advocate for yourself. I am NOT afraid to talk up to doctors).
I've had gravelly knees since age 20 or so and that seems to run in my family. It hasn't gotten worse in the last 25 years - it's like it just happened and then stays stable forever. I can hear my knees make noise when going up and down the stairs. I wonder if an AI would destroy my knees like what happened to Cindy.
I do have a question: I notice some have mentioned that a small frame and petite stature increase the chances of osteoporosis? I'm 5'4, 105lbs and my wedding ring is a size 3 1/2 - I am really tiny (save for my breasts LOL).
I've never had family tell me they have osteoporosis - is it hereditary? We all have the typical arthritis and noisy knees though.
0 -
Starynights ! I had the weirdest left arm pain start and no clue what caused it. Whenever I'd reach back to shut off the alarm, reach to grab the seatbelt, or reach back in general I'd get a searing pain. I've been on Tamoxifen, Effexor, amlodipine, and zoladex. Are you on any of those?0 -
All that activity Claire ! Do you work outside of the home ? How do you find the energy? I barely have any as it is.0 -
Cee, osteoporosis is often hereditary. My mother had great bones (I remember when she had a DEXA at the age of 70 and was so thrilled because they told her she had the bones of a 20 year old! She had some arthritis and the 'crinkly' knees everyone gets as they age, but that is different from osteoporosis). The walking, weights, etc. all helped, but my good genetic pool is probably the main reason my bones did fine on Arimidex.
0 -
jmoolten..I see you mentioned cording in one of your posts. I was wondering of you would share your experience with this. I believe I have cording in my armpit and also below breast (tissue expander) down past my ribs. I went to breast surgeon and he said it was just veins and not to worry. I explained that it was painful especially in the rib area but he wasn't concerned. What type of doctor should I go to for this? How did you treat yours? Any advice would be greatly appreciated. Thanks
0 -
Pattie, I had cording as well. Surgeons are notoriously unhelpful with cording, probably because it generally goes away all by itself. Gentle stretching helps. Also, a lymphedema therapist can show you massage techniques that will help it along on its disappearing act. She also can confirm that you either have cording, or that you do not.
0 -
You can also find a physical therapist who works with cancer patients. My PT did a wonderful job breaking up my cording - hurt like h$\ at the time, but felt so much better afterward.
0 -
i was given my first DEXA by my PCP. I was slightly osteopenic. That following year I was dxd with BC.my onc gave me another one after chemo was done. My loss doubled in that one year. I was just a hair away from osteoporosis. My docs said o wait til t showed osteoporosis before treating it. Now just last November, i had one and nothing changed. Yay!. I will be been on this nasty soul fluff for three years this summer. Lots of joint ins, but a lot is due to osteoarthritis. I have to t antacids .m
0 -
Sorry my phone went wonky
Antacids and AI add to bone loss. As do age, chemo etc. I take 5000 units of vitamin D every day. 600 units of calcium 2x a day and 2 pills of magnesium 2 x daily. Everybody has to do what works for them. I was surprised and pleased that i hadn't tripped into osteoporosis.
I was pretty lucky that my primary doctor was involved in my care as much as he was. I saw him every 3 months. But I'm all doctored out! LOL. Between December and January I saw my PCP, cardiologist, Rythym specialist, Nephrologist, MO, and Ortho. Fir the first time since my dx, I was in good health. Finally I saw my Opthamalogist and was told I needed cataract surgery. LOL can't win LOL
Much love
0 -
moon, how many calcium pills do you take? I'm trying to find a good, absorbable form of calcium that doesn't require 6 big pills a day
0 -
Don't waste money. Your body can only absorb 600 units at a time. I take one 600 unit 2x a day. I think it has a bit of vitamin D included which makes the calcium more absorbable. I think Special k uses calcium chews because even the 600 ones are as big as my Metformen.
0 -
what brand has 600 in one pill? Although I have some alka seltzer chews that jaw 750 in calcium carbonate in one. I thought I read that the carbonate wasn't absorbed as well as citrate
0 -
I'm just sick of big capsules and my current stuff takes 3 pills twice a day To get to1200 and I have to spread that inbetweens my other meds that I shouldn't take it within two hour
0 -
fluffqueen-
Forgive me if you've addressed this elsewhere, but is it possible for you to get at least half of your calcium from food rather than a pill? You could "drop" 3 pills a day, since you prefer the smaller pills to the larger caplets. You just need to be getting your recommended daily Vitamin D as well.
Diana
0 -
Tessa, a few months after I finished up with rads, I had sore Left armpit where the arm comes out towards the chest. I had to do therapy to get the muscles loosened up. It can happen post surgically, or as a SE of the Sentinel Node procedure, or from rads. After having some massage and stretching incorporated into my routine, it went away. I learned that lymphedema can sometimes start there as well. If it persists, get it checked out, especially if you feel it could be swelling.0 -
Fluffqueen--I take Citracal slow release 1200 Calcium plus D. It is two tablets taken together and you are done for the day. It is formulated to release the calcium slow enough for full absorption I also take 5000 Units of D3 in addition to what is in the pill. . I am to forgetful to remember to get them in....0 -
I learned something interesting yesterday. Apparently Costco warehouse clubs offer free bone density scans at their pharmacies. They scan your heel and the pharmacist reads it immediately. I don't know how this type of scan compares to the DEXA from an accuracy perspective, but I plan to ask my MO and check it out. What a great way to periodically get an idea if anything is significantly changing.
0 -
Wow!! That could be worth their cost for a card!! Keep us posted!!
0 -
I had a bone scan at 60 or so that just did my wrist. Had to sit still for 5 minutes, as I recall. That really doesn't tell you about the state of your spine, hips and thigh bones which are the real concern. However, it can't hurt anything. I don't know when problems would show up in your heel. Certainly worth talking to your MO about it. I'll be interested in hearing what he/she says. HUGS
0 -
Hi everyone! SO happy the weather is starting to turn on the east coast... The timing is perfect as I'm also turning the corner from my recovery.
I have a question for everyone: I had to stop HRT when diagnosed in January. I am extremely wired with a 24/7 headache and the insomnia will kill me before bc does. This always happened in the past when I tried to stop HRT. I NEVER used to get headaches.
I have tried everything. Melatonin 10 mg does not work. Ditto for allergy meds. My doc has tried various rx meds (ambien, etc). I am trying to find something "off-label" I can use. The only way I can sleep is taking xanax at bedtime, which I hate to do. Next we will try trazodone.
I am worried because I know the AI (haven't started) may exacerbate my problem.
Thoughts?
0 -
Play around with the timing and see if that makes any difference. I took mine in the morning because I have sleep issues, but I remember there was one lady who said she took it at night and it actually helped her sleep BETTER. A rare case, but one can always hope!!!!!
0
