For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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CBK To add to the suggestions and thoughts above....my MO specifically said that the 're-set' after going off on a 2-week vacation from the AI and resuming usually helps, but you never know exactly which stuff will improve and when, so that might be what you've experienced. Unpredictable results. But, if the dizziness is gone, yay!
I've had BPPV and resolved it with the famous maneuvers. Not related to my AI.
While on my AI, I find myself to need to hydrate about 2x as much as before. I don't get a thirst cue to match this. I need to drink about twice as much water every day as before my AI, and much more than I'm thirsty for, to keep feeling okay. Whenever I slack off on drinking a lot of water all day long, I get dizzy, constipated, and generally fatigued. I have no idea whether this experience is exactly the same for other people, but I've heard hydration mentioned on this thread, so it might be similar for others. When I do physical activity, such as take a 30 min brisk walk, or gardening, biking, x-c skiing, or anything strenuous, I have to drink 8 oz of water every 30 minutes or so, or I feel like crap.
I didn't have this experience before being on my AI. Of course, there's no way to know whether it's due to being 60+ or whether it's due to being on an AI. Anyway, I feel perfectly fine if I drink a lot of water all day long, so this is manageable.
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Anxious789 - I do get periodic aches/twinges in different places that I do not associate with "a did", injury etc. Since anastrozole/arimidex can cause/contribute, any that perisist, I get concerned about. I do seem to injure more easily as well as heal more slowly. Probably mostly age, but I'm sure cancer and drugs contribute. I take brand name Arimidex. I think the SEs are less and came on more slowly than generic anastrozole, but they are there (stiffness in hands, a locking finger, clumsiness). I'm not due for a bone scan for another year of so, but am concerned what it might be doing to my bones. If you log food/activity/how you feel/trouble sleeping, you might want to note if anything seems to bring it on. I've been meaining to do this with IBrance, since some days are definitely better than others. Stay active, hydrated, stretch. Looking forward to when gyms can really open up and get into yoga, quigong.
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Hikinglady
Thank you for that information. No doubt this pill dries you out so stands to reason you should take in all the hydration you can get. I’m a terrible water drinker. So your point is well-taken.
Thank you again for your thoughts.
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BluegirlRedstate - Thank you very muchfor your input, it might be a sprain/strain that’s is slowly healing. I sleep on my side, hopefully that’s the culprit.
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BlueGirlRedState I noticed that you mentioned bone meds & AI. If you feel comfortable putting your DX and TX info settings to Public, we can see them below your posts.
I had a diagnoses of Osteopenia before starting my AI. In May of 2018 I had my first DEXAScan, where that was seen, and then I started my AI in November that year, after BMX and chemo were finished. I have been getting Zometa (Zoladex) infusions every 6 months to mitigate the expected/usual bone loss that AI's often cause, since I started with already having some osteopenia. And, Zometa offers some protection against bone mets, which is an added benefit, and as a breast cancer patient, I qualify for (expensive) Zometa as my bis-phosphonate.
It takes an hour or so for the infusion twice a year, and before I have it, I get blood work done, and MO meets with me. He's checking overall metabolic things, and blood chem panel, to be sure that organs are doing okay, since Zometa can be hard to metabolize. I always feel like crap the day after, very tired and sluggish and icky, but for JUST one day, and I drink a lot of water and rest, and feel just fine the day after that.
Last week, I went for a follow-up DEXAScan, to see if the Zometa is working. YES!!!! My bone density has improved. I'm still in the osteopenia range, but significant improvement was seen on two measurements, and that means So Far, So Good on that issue.
By the way, here's how I managed safety and exposure, in these Covid times, for necessary medical treatments. Of course, I wore a mask, but also a face shield, for going into the hospital imaging center.
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BlueGirlRedState I noticed that you mentioned bone meds & AI. If you feel comfortable putting your DX and TX info settings to Public, we can see them below your posts.
I had a diagnoses of Osteopenia before starting my AI. In May of 2018 I had my first DEXAScan, where that was seen, and then I started my AI in November that year, after BMX and chemo were finished. I have been getting Zometa (Zoladex) infusions every 6 months to mitigate the bone loss that AI's often cause, since I started with already having some osteopenia. Zometa offers some protection against bone mets, which is an added benefit. As a breast cancer patient, I qualify for (expensive) Zometa as my bis-phosphonate.
It takes an hour or so for the infusion twice a year, and before I have it, I get blood work done, and MO meets with me. He's checking overall metabolic things, and blood chem panel, to be sure that organs are doing okay, since Zometa can be hard to metabolize. I always feel like crap the day after, very tired and sluggish and icky, but for JUST one day, and I drink a lot of water and rest, and feel just fine the day after that.
Last week, I went for a follow-up DEXAScan, to see if the Zometa is working. YES!!!! My bone density has improved. I'm still in the osteopenia range, but significant improvement was seen on two measurements, and that means So Far, So Good on that issue.
By the way, here's how I managed safety and exposure, in these Covid times, for necessary medical treatments. Of course, I wore a mask, but also a face shield, for going into the hospital imaging center.
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In my post above, this image didn't show up online, although my end showed that it was loaded. I'll see if it works this time. Also, editing did not work for some reason, so I'll start over!
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Hiking lady - it looks like you use a shield as well as wearing a mask? Do you still need a mask with the shield. Are they one time use/disposable or can you rinse them off. I'm thinking they might offer more protection than a mask and would not fog up glasses.
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This article alerted me to the shield idea, and then my doctors also started recommending them
https://www.nytimes.com/2020/05/24/health/coronavirus-face-shields.html
I took a plain one and added velcro strips to the fastening strap, so it's easy to adjust. It's very comfortable. The thick foam makes it work fine over glasses. Mine is 'anti-fog PET' and after I use it, I wash it with warm dish soap and water, and let it sit to dry. I don't use it every day, but if I did need to, I'd just have several and rotate them. Most of these wash pretty easily. The lower quality ones have terrible clarity. I suspect that certain chemicals would degrade the plastic. Mine wraps around my face and is long---feels like a safe way to be in a room with a lot of other humans.
I wear my shield over a face mask. I think that in some cases, just the shield would be pretty good protection. I sewed face masks with a moldable wire (2.5" of pipe cleaner) in the top. Since it's snug around my nose, my mask doesn't fog my glasses.
Here's one source---they're easy to find online. I sent away for strips of adhesive-backed 1" velcro to customize the fit better.
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I'm feeling discouraged. I'm on non generic Arimidex. It's my 3rd aromatase inhibitor. For the first 3 months I felt so great! Very mild joint pain and that's it! Now I'm back to my old symptoms. Tons of joint pain, fatigue, migraines and sleep disturbances. I also have episodes once or twice a wk where I feel so bad, I almost feel like I'm getting the flu. I Have had all these symptoms before and they all resolved when taking a break from AI's. I eat well ( mostly vegan), very minimal sugar and exercise 5 days a wk, cardio and weights 3 days a wk. My BMI is 23. I'm looking for any tips to help decrease my symptoms. I need to stay on this AI, for obvious reasons. Thanks in advance.
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Krose53 - I use brand name Arimidex, which does have SEs, but I think less intense than generic. I buy it directly from a pharmacy as my Insurance would charge me at least 8x as much if I went through insurance. maybe try a 30-day supply initially or even a small break before taking brand name? Talk to your MO about this. It might take longer than 30-days for effects of the one you are taking now to wear off. $2/day from Eagle pharmacy, used to be $1. Someone else posted this link over a year ago, and I still sent that person hugs. https://www.eaglepharmacy.com/drug/arimidex
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Thanks. I appreciate your reply. I am on brand name Arimidex.
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Krose53
I feel your pain...truly I do. I don’t have an issue with migraines and that must be awful that no one can help you with relief from them . Those alone can be debilitating.For joint pain I currently am using Glucosamine with Chondroitin and Turmeric. For sleep melatonin seems to work very well for me but I can only take a very small dose every couple of days or I’m totally hungover. This combination has worked well for me recently.
I was taking CBD for a while for inflammation and sleep but is caused me dry mouth and gum problems so I stopped. Not everyone has this issue so I was throwing it out as another option because it can be super effective for joint pain.
I like to drink matcha green tea daily and kombucha for energy. I fail miserably at water intake but when I get my 64 ounces a day, I feel so much better.
I hope you can find some relief!
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BlueGirlRed
Hi I read your post and I have been on all 3 hormone therapies for the past year I tried them all and all gave me such severe joint pain in my hips and legs it actually crippled me. The last was Femera and I have been off it for 3 weeks. I will start tamoxifen in a week my last resort. Do you feel tamoxifen did a good job for you? It looks like after you stopped taking it the cancer came some years later. Do you feel staying on tamoxifen for 10 years would have helped keep the cancer at bay?
Zeke0 -
Zeke - I hope you find relief from the SEs A question. Go through the various forums, your Oncologist just might not know or be able to discuss "non-standard" . For stiffness/joints - I think turmeric as food (powder, use with black pepper) and supplements help. Glucosamine/chondroiten might help some. Acupuncture helps. Most recently I am trying electrostim with acupuncture, I think that helps. I read about a Japanese form of scalp acupuncture that seems to help, but could not find anyone who practiced it.
https://www.nursingcenter.com/ce_articleprint?an=00130989-201509100-00008
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833481/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142070/
I wish I knew if tamoxifen did any good or if was just doomed to get BC again.I constantly asked my DRs about hormonal therapy. There is no monitoring on how much estrogen drops with either tamoxifen or AI. Tamoxefen blocks the receptors, and AIs block the production. It seems like it all comes down to statistics and menopause. Premenopausal get tamoxifen because the overies produce more estrogen than AIs can block. After menopause, the adrenal glands (mostly in fat) continue to produce estrogen, and it is felt that AIs work better (statistics ?). I'm taking Ibrance now, and maybe tamoxifen just is not used with Ibrance. I think I had fewer SEs with tamoxifen than AIs. This is my 3rd time with BC, and MO feels like each is a "new" one rather than recurrence, but admits there is no way to know. Sometimes I wonder if that feeling comes from a belief that the cancer treatment is working, so it must be a new one. 2009 I had a lumpectomy, radiation, and tamoxifen for 5 years, dense, lumpy left breast, normal right. 2016, cancer again in left. Chemo, bilateral (my choice), no reconstruction, started AI but immediate problems with joints, switched to tamoxifen after a few months. 2019 tumor in R-axillla. Taking Ibrance and Arimidex.
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well who’s to say you were on tamoxifen until 2013 and did not get the cancer back until 2016. 4 years later after stopping tamoxifen. Then had chemo but got cancer back after the chemo is the right breast. So off tamoxifen and on AL.
It’s a crap shoot everyone is different. I was worried because they are taking me off AL as I just could not even walk so now they said tamoxifen does not give you that joint pain. I Know it’s not as strong and I am 62 years old so should be on AL but can’t. You take good care of yourself
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Zeke - wishing you well. Tamoxifen might cause blood clots. This did not happen to me. But I met a woman 5 months ago in for imaging because of suspected clot. She said her DR never warned her about that or what to look for or how serious it was. She was an active woman who had just returned from a trip over-seas for a tennis tournamnent and bicycle trip. Airline travel was a risky situation that a DR should have warned her about and preventative steps. I did experience leg cramps, in particular in the left calf. Cramp could happen any time, from falling asleep to stretching to hiking to swimming. Sometimes quite painful. Mg supplements, staying hydrated, staying active helped a lot.
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My MO said if I was going to travel by plane I would have to take a Tamoxifen holiday.
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Hi thanks my doctor warned me about stroke blood clots heart attack and cataracts with Tamoxifen.
I am scared but also scared that if I don't take it the cancer may return. I could not take any of the other hormone therapy drugs I tried to stay on them and Just suffered. With Femera I could barely walk. I asked my doctor if I could stay off it for a month to get my legs back before I go on the tamoxifen and he said ok. I will start it at the end of this week and see how it goes. I did hear the biggest complaint was weight gain on the tamoxifen.
Thanks for your reply!
Be well,
Zeke
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I have been on anastrozole for almost six months with some minor SEs ( joint stiffness). Today I noticed minimal hair shedding (hair in my brush). I am one year out off chemo this month and I know it sounds silly after everything (chemo, mastectomy, radiation and delayed reconstruction due to covid), but this is upsetting. Wondered if others have experienced this.
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Laurencl
Yes--there is a whole topic on it: https://community.breastcancer.org/forum/78/topics/859567?page=9#idx_251
Anastrozole unfortunately can have that side effect--I had quite a bit of hair loss in the first year while on it. I took pictures each time I washed my hair of the huge clumps that came out. The good news is it seems it stopped/definitely slowed down in year 2 on anastrozole. The nurse practitioner at my MO office said that is usually the case--that it stops/slows down. I also think it seems to have filled back in a bit with baby hairs. I also started taking various daily supplements as soon as it started happening---they are noted in this study and I do believe they helped:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864803/
Lastly some on the hair loss topic thread used the LED hair loss caps and several thought that helped quite a bit. You can read more about that on that thread I posted link to above.
So it is very upsetting--I know that firsthand--the good news is that there are things you can do to help and it does seem to slow/stop after a period of time.
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mysticalcity
Thank you so much for your response. I do take biotin and use a biotin and collagen shampoo. Just one more thing to deal with I guess0 -
Hi, Ladies. I have had pretty good luck with Arimidex for the 7 months I have been on it. A few times I have had the sharp pain, I called it an electrical shock on my surgical side, but I think it is from the surgery and radiation. My finger joints on my right hand get stiff. My middle finger locked up last night. I have exercises I am suppose to do, but it was difficult with that finger. This morning it seems ok. I was on statins before BC, but did notice an increase on my labs last month. The PCP did not change my dosage.
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Did they give you something for the nausea? I am just about to start this and looking for help. Thanks!
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Micky110, nausea? I had no nausea at all. Not when I started nor for the 5 years I took anastrozole. I don't recall anyone mentioning that. Please keep in mind that many women have no trouble taking anastrozole with few if any side effects. Of course there are women who do have problems. But I wouldn't anticipate having problems. If they crop up, we're here for you and so is your MO.
HUGS!
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Micky110 - I do not experience nausea with Arimidex, so no tips on what helps. Cancer, its effects, the success of treatments, SEs are all over the board. A huge spectrum. There are several threads on Anastrozole/Arimidex on breastcancer_org. Maybe someone has posted there. Below are just a couple of the threads. With so many threads it can be hard to find specific information, maybe do a search on hormonal therapy, AI, anastrozole, Arimidex and nausea. THe AI might be called different names, spelling, upper/lower case etc. I do not know how "fussy" the search engine is.
https://community.breastcancer.org/forum/78/topics/876572?page=1#idx_20
https://community.breastcancer.org/forum/78/topics/802153?page=56#idx_1658
https://community.breastcancer.org/forum/78/topics/854403?page=50#idx_1485
https://community.breastcancer.org/forum/78
https://community.breastcancer.org/forum/78/topics/790338?page=579#post_5553361
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I had the same problem with my fingers locking up. I had to have 3 of them operated on. My hair is falling out, I've gained 50 pounds, my joints hurt, lots of hot flashes and I've been on Anastrozole since 2014. Last year, the doctor told me if I could hold on for one more year, I could go off of them. So I was counting down the months but when I visited him in June. He said it would be a few more years. I was shocked that I went out to my car and cried for 1/2 hour until I could drive. I know, I'm lucky to be alive but when he had my hopes up about getting off of them, it felt like I was "sucker punched". Has this happened to anyone else? By the time I get off of these pills, I'm going to look like the Pillsbury Dough Boy.............bald and fat 0 -
Tobyholicdeb - I'm sorry that you are experiencing so many SEs and the oncologist is recommending that you stay on AI for several more years. Initially brand name Arimidex did not seem to have the SEs of the generic Anastrozole, and they are not as severe, but my hands are stiffer, and one finger on left locks up. I have been on Arimidex/Ibrance for almost a year now, no metastasis indicated (Sept 2019 PET), but this is the 3rd time for BC. Hoping the Ibrance knocks the S****** out of it. Oncologist has indicated that she would probably Rx both drugs for years, even if there is no longer any evidence of cancer. There are several threads on AIs, hormonal therapy on breastcancer_org, and people do post what seems to help them. Everything from hand exercises to a variety of supplements such as turmeric, glucosamine, comfrey, CBD salves (with/without THC). Searching the site can take time to find what you want, but I find it helpful to hear from others eperiencing the same thing.
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Tobyholicdeb, Maybe get a second opinion or try a new MO. I recently switched and it has made such a big difference in my treatment. I read another post about hair loss and she had been on anastrozole for 5 1/2 years and stopped due to her bone loss. Another the doctor decreased her dose. Maybe there is another solution if you want to continue on this med. Best wishes...
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Zeke - I had a really good experience on Tamoxifen. Six years. Initially, had some odd side effects like face tingling, hands and feet burning, leg & feet cramps every night, hot flashes every few minutes, etc. Yuk! But things settled down, and I found my ways to deal with what stayed. Mg & b12 for hands and feet. Face tingling just went away. Tonic water (quinine) on ice with lime, and Mg took care of nightly leg cramps. Didn't gain weight or lose hair, that's always good! I'll be interested to hear how your joint pain resolves. Hope you are feeling better all the time, and have a good experience with Tamoxifen.
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