For Arimidex (Anastrozole) users, new, past, and ongoing
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Castigame, Remember you also have bones in your arms, so besides walking make sure you do some weight lifting with your arms. I forgot about my arms and lost 25% of the bone in my arms on my dexascan. I negotiated with my onc to hold off on starting Prolia injections if I promised to get back to doing my arm weights at the gym. Now that I'm on Medicare I had to pay $150 to have my arm included in this dexascan, which I did, and my arm had improved 4% and I don't have to start the Prolia.
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Hello!
Just needed a place to rant about my fatigue, weight gain and hot flashes. I really dont enjoy this at all.
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My DR has not expressed any concerns about turmeric or curcumin. But I think I've read posts from others whose DRs have expressed concerns, then again they usually do about supplements. Acupuncture helps. There is even an article on this site from 2017 where it was studied specifically for joint pain and stiffness associated with aromatase inhibitors. If I were savvy, I'd find it and paste the link. I quit taking anastrozole after several months, and it was months before stiffness/pain subsided. I take tamoxifen now and am concerned about SEs, so far so good. One person on this forum said that switching from generic to brand name made a huge difference, and that she bought it directly from the manufacturer for $1/day . DR needs to send in the RX.
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I started Anastrozole a few weeks ago, and over the past week developed an incredibly hot/red rash over my face and neck very much like a bad sunburn. I thought possibly that it was a burn through the car window on a one hour drive to and from a medical appointment, but it continued to worsen over the next few days so I left a message for my Onc and stopped the medication. My skin is now peeling but the rash is gone.
I have very, very sensitive skin unlike most doctors have seen. I honestly had to purchase covers for the fluorescent lights in my office because I was getting burns over and over on my forearms (as they were most exposed while working at the computer). Figuring out the cause took us nearly 8 months. So...I don't imagine most have had this problem. I am just wondering if anyone else has experienced skin problems while taking Anastrozole.
I had a very small, 22mm DIC in my right breast with clear lymph nodes, but because there was such concern about radiation or chemo therapy due to my skin problems I had a full mastectomy with reconstruction in order to forego radiation and chemo. Tissue expander is in and I will have the implant completed on 9/11.
Anastrozole seems like the drug with the least side effects and my bone density improved significantly over the past ten years as I take Calcium and large amounts of vitamin D, so I was hoping to be able to take it.
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Inmyownskin- I found my face breaking out for a while on Anestrozole. It was almost like before I retired, when I was working and on the phone a lot, break outs along my chin where the phone would hit. But that dissipated.
Your skin sounds super sensitive. I hope the burn area heals up quickly for you. Best wishes!
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Hi
I am so glad you reposted this thread. I am starting Arimidex in a week and so afraid of the side effects also. I have been on Tamoxifen for 3 years but have to switch meds because of a recent surgery. I had my ovAries and tubes removed last week due to suspicious solid cysts. I hated Tamoxifen for every nasty side effect so really hoping Arimidex is not as bad but it seems like it is. I now have to Start over and take this new medicine for 5 years. The 3 of tamoxifen does not count My mo said. That has me so frustrated and just sick over. Our battle never stops. Hope all goes well with you on Arimidex. I am hoping it's not all bad.
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Hi,
I’m happy to have found this thread. I was diagnosed in Sept 2017 with breast cancer in my left breast. Since my mom had it 2 years prior, we did genetic testing and found I carry a CHEK2 gene. My family is loaded with breast cancer, however, the rest of the family was diagnosed in their late 60’s and 70’s. Since my diagnosis came in my late 40’s and I carry a gene, I opted for a bi-lateral masctomy as I only want to go through this once. I didn’t have to go through any chemo or radiation. So that was a huge relief for me.
My surgery was in November, I had infections so I had to have the left side expander taken out in December. Then we put the expanded back in March and I have had my implant surgery completed 3 weeks ago. I’m so happy to have this part over with.
I’ve been taking Anastrozole since January and didn’t have any issues until about March where I noticed my arms began to hurt and I didn’t have the normal range of motion anymore without some intense pain. The pain has moved to include my shoulders and has been causing sleeping issues. I can’t even put a coat on without pain. It’s getting a little ridiculous. I have noticed that since I stopped going to the gym because of this past surgery the pain has gotten worse. I’m cleared to go back to the gym next week. From what I have researched strength training is supposed to help.
I’ve also researched that Turmeric is supposed to help with joint pain as well as cinnamon. I put a teaspoon of Turmeric with honey in my morning coffee and sprinkle cinnamon on my apple in the afternoon. I just started last week and won’t know if it’s actually helping for another month or so. I also take Vitamin D and have been making essential oil rubs to help with the pain.
I didn’t realize how much this diagnosis would affect my life as I’ve also had problems now with vaginal atrophy and can’t take any medication because they all have estrogen. So another hurdle I have to figure out how to jump over.
I don’t want to start taking Advil every day, however, I do take it when the pain is just too much and it justtakes the edge off. I tried Aleve before I went to bed last night and it didn’t do a thing for me.
Does anyone else have any natural remedies?
Thanks!!
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Blessed1129. I have not been on Anastrozole very long however I developed vagina atrophy during chemo. It got so bad I itched and it hurt all the time. I am using replens twice a week. It does seem to be helping. I do have a white discharge since I started it but according to what I have read that is normal while the dry dead skin replenishes itself and to give it up to 8 weeks and it should go away.
I have developed arthritic hands. A friend of mine let me use her Lanacane prescription cream and it helped tremendously! I also have noticed the more I move the better I feel. I'm not out there tearing it up on the exercise floor by any means. I have joined a cancer rehab exercising class where they are teaching me slowly but surely weight training and stretches that are helping me.
Some people Swear by arsenic cream or pills. I myself have not tried them but my mother really likes it. It is natural.
Hope with getting back to the gym you start feeling better and that you get some relief from your symptoms soon.
Have a nice day! :-)
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LIFE1963, thank you for your suggestions. I had the vaginal atrophy before the diagnosis because of menopause, however, the medicine they gave me worked wonders and once it was under control I only took it as needed. My oncologist said I can’t have it because of the estrogen, I tried to explain that I reallly didn’t use it a lot but they said no. I get it, but it stinks. So that’s why I’m having the issues again. I have tried Replens but only used it 2 to 3 times because of the discharge and didn’t like it. Maybe I should have given it more time.
The doctor has suggested a vaginal lift, supposedly, that can help and then you have to go every year for maintenance. The initial procedure is $2,500 and insurance will not cover it, you have to pay the whole thing out of pocket up front. Then $300 or so yearly for the maintenance. My boyfriend has offered to help pay for it. He has been amazing throughout this whole ordeal. I’m just not sure I feel like going through another procedure right now, but, I’m thinking about it.
I’m glad your classes are helping you and you found away to get around the pain. :
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Yes. The Mona Lisa. I am looking into that as well. However I am with you. I don't think I really want to go through anymore procedures for awhile so I'm going to try replens first. However if I find I am still struggling in that area I may look into the Mona Lisa a little more. You have to let me know if you go for it and how that turns out. So to speak.
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If anastrazole is not a chemo drug, then why are oncologists the only ones permitted to prescribe it? I do believe it is called a chemo-preventative drug? I know what it does. I've been on it for almost 5 years. I know it blocks estrogen, but it is a very powerful medicine.
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Hello. I was wondering if you've been having issues with Anastrozole in The Last 5 Years that you've been on it? I just started it 2 weeks ago and I'm and I am one of the ones that they have prescribed it to take 10 years. So far the only thing I'm seeing is joint I don't move around alot, some insomnia issues and hot flashes.
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Oh yeah. I seem to be one of the women it has hit especially hard, and I am also one of the women whose onco wants me to be on it for ten years! Oh, man. I am especially hit hard in my joints, especially in my feet and hands, both of which I use constantly. activity helps, but if i do too much, my spine is messed up from hard construction work I did until I was 52, when I got cancer. It's hard for me to even keep up with housework, so I don't! Ha ha. I've tried everything. So, I'm gonna try to finish out this year, and then stop. If I was you, I'd try it, because of its proven benefits, see how it goes. Longest 5 years of my life.
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I don't know why they want you to take it for 10 years, when your diagnosis was DCIS, even if one node was positive?
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My diagnosis was stage 2B. Tumour was a little bigger them 3cm. I am not really sure why other than the new study this year came out that women do better on it for 10 years.
That sounds pretty rough on your spine construction is a very depleting job on your body for sures. My SO isn't the tiling and he is really feeling it at the age of 57.
Did you try and kick as much soy out of your life or did you just eat and live your life like you did before your diagnose? I have been trying to get as much soy out of my life but it's completely a tough project to do considering everything has soy in it! This can be a very frustrating thing.
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TrailDweller as you already have osteoporosis wanted to make sure you saw these two things that might help:
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hey castigame how are you? Mamaoz here
Are you taking anything for bone loss. I am not even though my dr wants me to
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I have been on anastrozole for 6 years, after 2 years on Tamoxifen, and stopped 3 weeks ago. I had very few side effects while I was on it. But yesterday I took offense at something my sister said (that I can't even remember) and spent the day crying off and on, and today I have been very anxious. It suddenly occurred to me that it might be withdrawal! I am not usually moody.
Does this make sense
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My MO wants me to stay on the anastrozole forever -- its been 5 yrs and she said stay on for 10 more years or forever because its a great preventative...
I do have severe osteopenia though and she wants me to take something (i forget the name) but it could be a problem with your jaw if you have dental work and I have been a dental patient for my whole life ---(probably should just get them pulled and false teeth).. so I haven't been able to take it ... always something to worry about!
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Tomboy it’s not a chemo drug. Any dr can rx it. Is an anti hormonal drug, drives down estrogen production. Most of our cancers feed on estrogen. Tamoxifen works by binding to the estrogen and preventing it from being used by the cancer cells. Or that’s what’s supposed to happen. I’m not a doc.
I was told 10 years on Arimadex. I lasted a bit over 4. Tried tamoxifen lasted less than 6 months.
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Thank you Mysticalcity! I printed off the list of micronutrients and saved the article.
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So are the side effects from the pill itself or the response of the body to the lack of estrogen?
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Not sure, maybe both. Hope someone with more knowledge comes along.
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Have been taking generic anastrazole since May. Was pleased to avoid most of the side effects I'd feared, but was in denial about the severe thinning of my fine but always abundant hair. First noticed it for real after a day at a pool -- sunburned scalp. Then my hairdresser remarked on how much it has thinned. Have been taking biotin and using lots of hair-thickening treatments, probably not helping at all. Obviously it's not the worst SE there is, but for me this is extremely difficult.
Will be seeing my oncologist tomorrow, not really sure whether to try a different AI; seems to me they will all affect the hair this way, and others could have other bad effects.
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Ugh, miranda. I'm so sorry. I really have no idea but my guess is the hair thinning has to do with lack of estrogen, so would probably happen with any AI. It's great that other than that you've been tolerating anastrozole well--that's the one I'll be starting.
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Hi, Ingerp, good to see more familiar faces here to chat with. When do you start it? Iv been on it 7 days, and my sister who took it for 5 years, and is now done, told me about the thinning hair as well. Sorry Miranda. I also wonder if a different RX could be used, but figure the beat down of estrogen is why the hair thins. I wonder if anyone here has had any info from their onco Dr. Regarding any steps to take to avoid, or fix this issue. Supplements? Rogaine? I don't see my dr. Till December. I sweard he gets the nervous widgets when hair or any SEs is brought up to him.
On another note mg bone density scan came back normal with no osteoporosis I'm thankful for that.
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That's funny, Djt, about "the nervous widgets." They really don't want to hear about the SEs. I'm imagining what my MO will say -- probably "It's your decision," you know, whether to risk recurrence or take the damn pill.
There is a thread on this board about hair loss from hormone therapy, with many kinds of approaches. I have also heard of women using Rogaine effectively (it scares me a little, but maybe not as much as balding does).
That's great news about your bone density scan! My baseline scan showed osteopenia, and I had my first Zometa infusion last week. I did get the "flu-like symptoms," which is pretty strange when you don't have flu.
Ingerp, I was certain I was going to avoid all bad SEs from the anastrazole. So far this is the only one that's really gotten me down.
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Djt—my MO said two weeks after rads, which would put me at mid-October. It’d be nice to get some hair re-growth before I start the AI, I guess. And I hear you, Miranda. At age 60 I was just starting to like my hair before my dx. :-(
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Ive been on arimidex for 10 mo and am just. Oticing my hair thinning drastically on top. After being bald for so long its thrilling to have hair again.. but now Im having to do a comb over!! I had slacked off on my hair skin and nails vitamins but im taking them again hoping it stalls the fall out!!
Ihave osteopenia my onc wants me taking boniva but I dont tolerate it. So im taking extra calcium and vit D. Any suggestions. ??
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Mine started me on Anastrozole two weeks after my last chemo treatment. I guess the chance of getting my hair growing back anywhere close to what it was is pretty slim. :-(
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