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Topic: For Arimidex (Anastrozole) users, new, past, and ongoing

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 10, 2012 07:46AM - edited Nov 15, 2017 02:07PM by Moderators

nancyjac wrote:

I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.

I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.

Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.

Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/7/2011 Herceptin (trastuzumab) Chemotherapy 12/7/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2012 Mastectomy: Left, Right Surgery 4/17/2012 Mastectomy: Left Surgery 4/19/2012 Mastectomy: Left Radiation Therapy 5/29/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/10/2012 Arimidex (anastrozole)
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Oct 10, 2018 10:07AM viewfinder wrote:

Hi there,

I'm starting Anastrozole this Friday but I'm scared (my last radiation treatment was last Friday and my oncologist said to take a week-long break before starting it). The side effects sound overwhelming, especially because throughout my life I have side effects to many medicines I take...and must stop taking them.

What are some of the non-prescription stuff I should buy in anticipation of some of the side effects? Thank you.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes
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Oct 10, 2018 10:41AM CBK wrote:

DJT

All I know I was a misery for months on generic TEVA brand anastrozole and switched to brand name Arimidex and I’m like a different person!

One of my Dr said if you are miserable on anastrozole, aromosin May have a better chance of being tolerable because of how it works to block the estrogen somehow! I don’t have any first hand experience on it.

Yeah you aren’t off anastrozole long enough to feel better. But I will tell you acupuncture cut my hot flashes at least in half or more. Totally worked.


Good luck djt!!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 10, 2018 11:16AM - edited Oct 10, 2018 11:17AM by Ingerp

Djt—my guess is the reduced estrogen is going to cause the same SEs regardless of which AI you take. That said, I know different women often tolerate one better than the others, so there would be some (additional?) SEs that depend on which AI and/or which manufacturer.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Chemotherapy 5/17/2018 Taxol (paclitaxel) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Oct 10, 2018 12:15PM PontiacPeggy wrote:

Viewfinder, not everyone has SEs from the AIs. At least not debilitating. I've been on anastrozole (made by Teva) for 4 years. I don't see anything new except maybe dry eyes and that is likely age-related. Start taking it with an open mind. If you have SEs switch to a different brand, the brand name or a different AI. But do give it awhile before deciding anything. Good luck.

HUGS!

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Oct 10, 2018 02:04PM - edited Oct 10, 2018 04:55PM by CBK

viewfinder

We are all different. I had a difficult time with anastrozole but I'm pretty sure it was because I was placed in surgical menopause and then placed on it two weeks later. So I was an extreme case. Plus I had left over neuropathy from chemo!

Depending on your side effects here's my assessment on what you can do to help yourself if you experience them.

1. Stay hydrated, for some reason that little pill dehydrates the hell outta me. I cut down on caffeine and threw some electrolytes in the mix. Whatever works for you but drink and drink some more.

2. If you aren't on a good food based calcium supplement with magnesium and D3 consider it with your Dr.

3. I added in turmeric from curcumin source for joint aches as well as a high quality fish oil.

4, Whatever you like to do, exercise and make it as often as possible. I swear yoga healed me on many levels but that's always been my passion. My PT cancer Dr. said super important to get in 30 minutes of aerobic activity a day. Apparently there have been studies on this to support that it reduces joint pain associated with als. Weight bearing exercise is necessary as well.

5. I cannot tell you how acupuncture helped with my hot flashes. My MO actually recommended I go since she's seen such improvement with a few treatments. And believe me she's no fan of taking a trip down any holistic path!! Oh and it can also soothe those frazzled nerves and aching joints. Yup!

6. I also take supplements for my hair but that's my own vanity in action! I haven't seen significant hair loss yet on anastrozole, but I'm not taking any chances after AC took every hair on my head!! And it's a big complaint for those taking als.

As I said above I switched from generic anastrozole to brand name Arimidex;this was a game changer!

That's what worked for me but my side effects were hot flashes, joint aches, cracking bones, headaches, dizziness and blurred vision! And a case of occasional rage!!

Don't be scared, we are all here living to complain! For some of us, what would scare us more than anything if we didn't have this little pill!!

Good luck!!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 10, 2018 02:15PM Taco1946 wrote:

Sadly, most of us experience some SE's from AI's. Joint pain and hot flashes are what I read about the most but there are others. Also weight gain and hair thinning. After all, they are putting us into menopause again! My SE's were different with arimidex and femora. Many have found the the manufacturer and/or taking the proprietary rather than generic helps. But don't give up before you start! Work with your MO to find the one that is best for you. People also report feeling better with the addition of canibas and acupuncture.

I was taking chondrotian/glouscene and calcium with vitamin D before BC. I have added biotin and generic claritin. I have also upped my physical activity and really pay attention to how much water I drink each day. I have not been so diligent about diet I admit but with the increased exercise I have managed to hold my pre cancer weight.

I can't imagine taking them longer than 5 years (I will be 76 then) but currently am wiling to deal with the SE's. I know they are no guarantee but know they up my chances for staying NED.

Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/29/2016 Balloon-catheter: Breast Chemotherapy 2/3/2017 Taxol (paclitaxel) Targeted Therapy 2/3/2017 Herceptin (trastuzumab) Hormonal Therapy 12/4/2017 Femara (letrozole) Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Oct 10, 2018 02:17PM Snickersmom wrote:

So for the past 16 months, I thought I was taking the Arimidex. Come to find out, I've been taking Anastrozole. Other than some aches and pains, I can honestly say I am one of those who can tolerate it without a problem. I was already on Gabapentin and Tramadol for my degenerative back issues, so I'm thinking that those have most likely helped so that I don't have any big side effects from the Anastrozole. I never thought to ask my oncologist but I sure am thankful that I'm okay with taking it. I wish you all could take it with no side effects.

Dx 3/24/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 5/2/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 6/11/2017 Arimidex (anastrozole)
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Oct 10, 2018 03:56PM Djt wrote:

I really appreciate everyone s comments on this .

I just left one of my Drs. Offices, my radiation oncologist, and she assured me that qua.lity of life must be considered. She said to make my oncologist appointment sooner to discuss with him these side effects regarding anastrazole. She specifically.mentioned 2 other drugs that don't come with bone pain and hot flashes.

I asked specifically if all these drugs cause estrogen to decrease. Don't they all do thiis with related SE? As. I thought the same as Ingerp just wrote above. But my dr. Said says, no, they all have a specific different effect. I'm off the drug till I see him next month.for me, the hot flashes are more of a heat wave that envelops my upper body, making wig wearing very difficult, and I feel nasty sweaty all the time. It comes over me 8 to 12 times a day, most often in the evening. My feet, hands, wrists and elbows feel like they wont bend and are very painful. How many ibuprofen can I take in one day, and Tylenol pms at night?

Sorry about the wierd typing and bold, idk what i did, eyesight stressing me out.

Dx 2/12/2018, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+ Surgery 2/14/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 4/24/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 11, 2018 12:02AM bennybear wrote:

CBK, thanks for the suggestion about the acupuncture. I would like to try it instead of more meds!

I sure appreciate everyone’s insights.


Dx 3/25/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 6/6/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Oct 11, 2018 06:07AM MamaFelice wrote:

Chiming in real quick on acupuncture.....just had my 3rd session and I am AMAZED at how even after the 1st my joint pains in hips (mainly upon waking and standing after sitting for a long time) have practically disappeared. More like a slight stiffness than pain. My energy and overall mood has improved as well. For those of you that haven't given it a try, please do before stopping your AI. I've been on Anastrazole since February when had ooph.

Djt-- I have had eye issues, but I related mine more to the Taxotere as mine seemed to start while on chemo and I would feel my eyes get all wonky with each treatment. MO had me see eye doc and all was fine....he also did brain MRI which thank goodness was fine, but my eyes do have strange sensations now and again, and I attribute it to Taxotere. Did it start for you during chemo at all?

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/2/2018 Prophylactic ovary removal Hormonal Therapy 3/15/2018 Radiation Therapy Lymph nodes
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Oct 11, 2018 06:58AM Ingerp wrote:

Djt how old are you? I have no idea if this is true or not but I’ve read that it *might* be that women who are older/have been in menopause longer might have an easier time with the AIs than younger women who took Lupron or had an ooph just because they already have a lower level of estrogen. I haven’t started yet but am hoping it won’t be too bad because I’ve been in menopause for 8-9 years.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Chemotherapy 5/17/2018 Taxol (paclitaxel) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Oct 11, 2018 07:34AM - edited Oct 11, 2018 07:50AM by CBK

InGerp-

Of course this is the case. I had an ooph and the transition has been torture. I tolerated chemo a thousand times better and all my surgeries. Not that I'm wishing any of these on anyone, even my worst enemy!!

You can get through it but you need a lot of support and alternative thinking!!

Benny bear- I was in bad shape when I went for acupuncture, there is this point on inner ankle that totally helps with hot flashes. I saw a huge difference in one session. I cried so hard after my first session, like is someone finally going to help me and NOT try to throw another pill down my throat! I finally felt so relaxed and serene. My acupuncturist is a dream! Good luck.

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 11, 2018 08:36AM - edited Oct 11, 2018 08:50AM by Jinx27

Thank you for responding,

As a young patient that had er/pr positive bc, my doctor wanted to move forward with ovarian suppression and daily aromatase inhibitor by mouth. Studies have shown that recurrence rates decrease with this approach. Hopefully things make sense now to you. Im in chemically induced menopause via Lupron.

It really a rollercoaster. Taking the generic drug doesn't help either, because of my reaction to the fillers. My doctor is talking about doing this for 10 years, I really dont know if I can do it. I see an acupuncturist, and have an appointment for my medical marijuana card in November. Hopefully a nice MJ strain can help with my insomnia, mood swings and neuropathy. Im also considering psychotherapy too, just to get myself aligned with this new life im living as a survivor.

At this point im not impressed with generics at all.

However this week I was able to order name brand Arimidex, my HSA from work is covering the cost since my insurance won't pay for name brand drug. Hopefully I can see some relief. I emailed my doctor and he stated that many patients have been complaining about the side effects from the generic Ariimidex. Most of us here use the same pharmacy and are prob taking the same Arimidex from the Accord manufacturing company in India.

My Dr. offered to have me stop meds for a month for a break, I might take him up on it later, but I want to give the name brand a try. I really am appreciative of all of you. Without this site I wouldn't be able to discuss these things or know about the difference between generic and name brand. Every cancer patient should have access to this type of solidarity!Heart

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 2, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Hormonal Therapy 8/29/2016 Arimidex (anastrozole) Chemotherapy AC + T (Taxol)
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Oct 11, 2018 09:09AM CBK wrote:

Jinx

I’m really cheering you on that the brand name can help you! I’m personally astonished with the difference I feel on it! I order it through eagle pharmacy at $30 a month. Otherwise with my insurance it was going to cost me $780 for a 3 month supply!!😱

Oh shoot you have neuropathy too? Me too!! That put a double whammy on my body aches. But the most amazing thing is this is finally all improving!

Thank you Eagle Pharmacy and ladies on this board!! Keep us posted Jinx, please!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 11, 2018 01:03PM - edited Oct 11, 2018 01:03PM by viewfinder

Thanks for all the helpful suggestions!

I'm on Vit D 3 and Calcium, but not magnesium. Doctor didn't mention the latter.

I'm not thrilled to hear about the weight gain and possible loss of hair. I'm already several pounds overweight.

Is depression a side effect?!

If need be, I'll look into acupuncture and try some of the other suggestions that have recommended.

I really can't afford the name brand if that's what my oncologist recommends down to road. btw, I'm 74 and that's why I sometimes think I don't want to take hormone therapy. Don't know how many years I have left but I'd prefer quality of life over feeling sick all the time.

As mentioned, I start Anastrozole tomorrow. Btw, is there a best time of day to take it? Thanks again.


Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes
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Oct 11, 2018 01:15PM Spookiesmom wrote:

Most insurance companies require the generic brands. I didn’t do well on the accord brand, so requested Teva from Walgreens. I refused to take it home if it wasn’t Teva, and made them order it for me.

Times are individual. If you have other meds, take then so you don’t forget. See how it goes.

Dx IDC, Stage IIIA, Grade 3
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Oct 11, 2018 02:00PM PontiacPeggy wrote:

Spookie, I'm with you. If it isn't Teva, I won't take it.

Viewfinder, I'm 73 and have been on anastrole for 4 years. My hair was already thinning and I was a bit creaky in the morning. Nothing has changed. My hair is still thinning. But I take regular generic Claritin and that helps quite a bit with the creakiness. I checked with my PCP because it is useless for my allergies and I wanted to continue taking Benadryl. He said taking both is just fine. And it is for me. Good luck!

HUGS!

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Oct 11, 2018 03:07PM CBK wrote:

Viewfinder

Magnesium is in my calcium supplement, it’s important for absorption of calcium. FYI

I didnt get depressed on it but I’m sure it’s a possible side effect.

I take mine in morning. When I was taking late afternoon to early evening my insomnia was worse!!

You are going to do fine on it I bet!!

Good luck!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 12, 2018 12:11AM CindyNY wrote:

I'm strictly TEVA brand too. Only because I know what my side effects are with it, which are doable, and don't want to try another.

I take it at 12:30AM. Night owl always, I did notice I'd wake up after 4 hours of sleep & had trouble going back to sleep. After a while that stopped, so I'm still a before bed AI taker. Pick what time works best for you. If you decide its not working, you can always change it. Best of luck!

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/14/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Oct 12, 2018 03:52PM Snickersmom wrote:

I take Anastrozole in the morning with no problem. I started out that way with it last year and it works okay for me.

Dx 3/24/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 5/2/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 6/11/2017 Arimidex (anastrozole)
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Oct 13, 2018 08:40AM MamaFelice wrote:

Hi ladies! I'm looking for some input from those with experience on Anastrazole (I believe mine is accord)...

I see my MO next month and want to discuss SEs of the Anastrazole as well and options to change to another AI. I've been on since min-February, so 8 months. I had terrible joint pains when first standing in the morning and after sitting for a long time like at a restaurant or in the car. Once I got moving though I was fine. In addition, I would have debilitating fatigue if I tried to work on my feet for 1/2 the day in my job as a caterer. Started acupuncture about a month ago and it really has helped with reducing these 2 SEs immensely.

My other SEs are my breathing.... started about 1.5 mo this ago, out of no where I can have a sense of shortness of breath, or a craving for deep breaths, and many yawns. It's not all the time, but happens at random, and not necessarily when I am exercising or exerting energy. I have always had acute asthma, and I feel like it is as if I'm having asthmatic symptoms. Maybe anxiety induces it. I need to pay closer attention and write it down so I am prepared to explain it to my doc. Similarly, my heart rate has been getting really high (185) with my workout. I called My onco cardiologist and he ran the gamut of tests on me the past couple of weeks including a CT angiogram and all checked out fine 🎉, and I see him next week to go over it all. Maybe it is a pulmonary specialist I need to see.

But I'm really tired of doctors, and wondering what is causing what..... is it the chemo, the rads, the AI, the sudden menopause having ooph, just getting older in general.... Im am otherwise healthy 48-year-old and I'm tired of feeling like I'm 80+....but if it is my new normal, I will work with it..... I just don't want to be thinking each new issue that crops up is cancer and then go through thousands of $$ worth of tests we cannot afford to learn it is just a SE of the Anastrazole. And then learn that if I just switched to another form of Arimidex, or another AI like Aromasin, these symptoms would dissipate. Maybe I need to go off it for a couple weeks and see if the SEs go away-- mainly the breathing and heart rate.

Sorry to vent here ladies, and would love any empathy from anyone that has had breathing/heartrate issues or sharing any thoughts about switching to another AI as well. Thanks bunches in advance! 😁

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/2/2018 Prophylactic ovary removal Hormonal Therapy 3/15/2018 Radiation Therapy Lymph nodes
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Oct 13, 2018 09:36AM - edited Oct 13, 2018 09:38AM by CBK

Mama Felice-

You are simply stating the facts. I too, had an ooph as you probably have heard me say a million times over on this thread. I was perimenopausal and the COMBO of this PLUS anastrozole were at times unbearable. The ooph I truly believe exasperates the side effects of the anastrozole or maybe 80 percent of the side effects are the drop of estrogen from the ooph! Who knows because 2 weeks after my ooph I was taking a anastrozole, that is an incredible shock to the system!!

I do not have a low pain threshold either. Not in the least! My side effects were headaches, hot flashes nonstop, body and joint aches ( I likened myself to a 90 year old woman) dizziness (where I could not get out of bed some days) insomnia, and severe mood swings. No doubt since I had residual neuropathy from Chemo this worsened the muscle and joint pain. I had a movement Dr that works exclusively with cancer patients confirm this.

And yes acupuncture has been amazing and yoga for me! Game changer was switch to brand name Arimidex!!

I don't have breathing problems. I can't imagine how scary this must be. But the dizziness was something that scared the hell out of me. I changed from TEVA brand anastrozole to brand name Arimidex and I feel 💯better. This could not be a coincidence in my opinion. My side effects were so awful it was my last ditch effort before I switched to another al. I feel like I have my life back!!

Is there a thread for surgical menopausers here? There should be, because for me this has been by far and away the most difficult portion of my treatment! I have complete empathy for you Mam Felice!!🤗

Hang in there and keep us posted!!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 13, 2018 10:09AM Goldfish4884 wrote:

I was already post menopausal when I started Anastrozole, just SE's of hot flashes until about 7 months in, I started having the joint pains, hard to get out of a chair, pain and stiffness after sitting in a car for 30 minutes or so. I too felt like I was 90 years old. My oncologist gave me a one month holiday off the Anastrozole to see if the joint pains went away. After two weeks off the Anastrozole, I felt like my old self, no more joint pains and stiffness. I then started on Letrozole and have been on it for just 5 weeks but so far so good. It seems like this is just a matter of trial and error, what works for some is not so good for others. I am hoping I get at least 7 months on Letrozole and my onco said we could always try the third AI. Good luck to you

Dx 9/28/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/23/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement
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Oct 13, 2018 10:29AM viewfinder wrote:

For those having very bad side effects, I'm sorry. I'm taken aback by the severity of some of them. Thank you for sharing your experiences.

I have a very important event that I must attend the end of this month, so I'm calling my oncologist on Monday to see if I can wait a few more weeks before starting Anastrozole. She may tell me I'm worrying too much, but I don't want to take any chances.


Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes
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Oct 13, 2018 11:47AM MamaFelice wrote:

Boy do I appreciate the quick responses from so many of you already! And I appreciate any more that want to chime in!

I am just not a "medicine" person..... always preferred making the healthy life choice to avoid a pill to make it better. In this case, I am soooo thankful to have the AI as part of the ammunition to starve my 99% ER+ Cancer, and not taking it is not a choice for me. I just want to ensure I am being my own advocate in requesting another AI option and not just settling for this is how it has to be....and to me, you all are the gateway to the truths about these meds. Thank you again! 😁

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/2/2018 Prophylactic ovary removal Hormonal Therapy 3/15/2018 Radiation Therapy Lymph nodes
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Oct 13, 2018 11:53AM Taco1946 wrote:

MamaFelice - keep "shopping" for the right AI. For me letrozole was better than anastrozole. Less joint pain, fewer headaches and some stability from my mood swings. I did take a three week break recently and MO also gave me something (haven't picked it up yet) to see if it would decrease my hot flashes so I'm back to popping the little pill each morning. Hate my thinning hair but it I could get the hot flashes under control, I could wear a wig. I also know that the balding isn't just the chemo and drugs. My stylist reminded me yesterday that my mother was almost bald when she died at 96.

Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/29/2016 Balloon-catheter: Breast Chemotherapy 2/3/2017 Taxol (paclitaxel) Targeted Therapy 2/3/2017 Herceptin (trastuzumab) Hormonal Therapy 12/4/2017 Femara (letrozole) Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Oct 13, 2018 07:59PM bella2013 wrote:

I believe that post menopausal women may not have the severe side effects on AI’s that chemically induced menopausal women experience.

I am into my fourth month on Anastrazole. SE’s are manageable so far. I would like to feel as good as I felt up to the day before I started on Anastrazole. I was five months post-op from BMX with DIEP Flap Reconstruction. I felt better than I have in the last ten years. I will keep finding solutions to the SE’s. I will switch to another AI if and when the SE’s become too overwhelming.

I have made peace with this little white pill. I am grateful that there is something that will stop feeding any cancer cells that may still be lingering about in my body.

Ladies, those of you who have been forced into menopause my heart goes out to you. Natural menopause is difficult enough much less having to give up every ounce of estrogen all at once.

Good luck to everyone as you work through these AI issues


Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/22/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Oct 13, 2018 09:28PM FarAwayToo wrote:

CBK, can you tell me more about your dizziness? This is something that bothers me the most, more than joint pains and hot flashes. I also worry that I should insist on more tests, and not just accept it as my new normal.

I'm not on anastrozole, I am on letrozole, but my oncologist says dizziness is AI related. She says I am having a hard time because I was thrust into menopause (I was 40 at DX and very regular before chemo has started).

My dizziness first strated while I was still on Lupron with letrozole, but then it went away for a month. It came back 2 weeks after oophorectomy. It's at its worst before and during a hot flash, but I also have small dizzy spells throughout the day, often when I am more.tired. I think (and really hope) that it's getting better slowly, but I still have it 5 weeks after it first started. It feels like when I don't get as many hot flashes, I am less dizzy. We had a week of cold weather and I felt a lot better, although not 100%. When I compare how I feel now to how I felt 2-3 weeks ago, it's night and day (now being better), but if I compare to 2 months ago, before oophorectomy, I am miserable. My DR says my body will eventually adjust to the absence of estrogen, but it may take another 6 months. I don't think I can't take 6 months of this.

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/22/2018 Zoladex (goserelin) Surgery 2/27/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/4/2018 Femara (letrozole) Surgery 8/20/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Oct 14, 2018 12:25AM Jinx27 wrote:

Received my brand name Arimidex today through the patient direct program! Only paid $30 bucks. I took the first one yesterday, we will see how things go....

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 2, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Hormonal Therapy 8/29/2016 Arimidex (anastrozole) Chemotherapy AC + T (Taxol)
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Oct 14, 2018 07:04AM CBK wrote:

FarAwayToo-

So sorry to hear you are experiencing side effects of the ooph/letorzole.I too feel out of everything joint aches were bad enough, but the dizziness is unbearable!

I think for me I’m easily dehydrated on anastrozole, I’m not a huge water drinker to begin with so this probably does not help my plight!

I don’t recall dizziness being something that happened right away after ooph and anastrozole but came on a couple months afterwards! At least if I did get dizzy early on it was manageable!

So before I switched to brand name Arimidex around 3 weeks ago, I would have days prior to this where I could not get out of bed I was so dizzy! It would be a whole day of me being largely incapacitated at about 3 times a week. Other days I would be just standing there and whoosh the room would spin. I can’t say it was correlated to more hot flashes or not! Hot flashes have subsided substantially for me! Thank God, because post-ooph I was a 24/7 hot flash until I went to acupuncture!!

I am about 9 and a half months post-ooph! It’s a hard battle. I’m encouraged to hear your MO is supportive in acknowledging the combo of the ooph and AL is very difficult! VERY!! My MO found my dizziness puzzling??? Huh, it says it right smack dab on the bottle caution: may cause dizziness! Combine that with the drop of estrogen from my ooph and I’m quite certain that’s what’s the problem😡

When dizziness was very bad I actually would take a small dose of Ativan for relief! I’m sure if you are like me you probably aren’t interested in popping another pill, but sometimes it was what I needed to calm down !!

But things do get better, they do! You are super early out of ooph. Let me know if you have any more questions! I’m always here!!

🤗Karen


Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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