Questions about Hormone Blockers: Side Effects?

Posted by kathysway @kathysway, Jul 24, 2019

alright half way through my Radiation treatments and its not bad at all now I’d like to ask for information on hormone blockers I’m 61 years old and most of my spine and hips have arthritis now I have been told by the Dr. about joint pain from these medicines so I thought I would ask for some info from the warriors that have to take these medicines first hand I know not everyone has side affects and some have I just want to be informed on the side affects thank so very much all of you for being here.

Very glad to have found this group. Stage2, diagnosed in 2017. two surgeries (partial mastectomy and then symmetry surgery) and 6 weeks radiation in 2018. Was on Letrozole – drove me crazy with the SE's (bone, muscle and joint pain; insomnia; hot flashes; night sweats; depression; no libido; extreme fatigue.) Changed to Anastrozole – having the same SE's. I did take a vacation for 6 wks from the Letrozole with oncologist's permission and boy did I feel better!! I think it's a balance. We know that in the clinical trials that taking the AI for 5 years lessens the recurrence rate. And of course it matters what type of tumor you had. But quality of life is also important, and the healthier we can be, the more we participate in life. I'm trying to hang on to the three year mark, at least (I'm at two years now), but it's really hard to feel yucky all the time. Thank you for listening.

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ljo, have you asked your oncologist about lowering your dosage? Perhaps a lower dosage could be a good compromise.

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Kathysway, sorry you find yourself in this situation. Having taken several of these drugs and having read extensively about the side effects and the experiences of others, it seems there is no rule of thumb regarding symptoms.. Every person reacts (or does not) differently and every drug can affect you in surprisingly different ways. My approach was to give one drug a try and see what happens. If it's no good, on to the next one. There are 5 that a post-menopausal woman may take, but do consult your doctor. If all are intolerable, then at least you know you gave the drugs a shot. One of them did prove to be acceptable to me after some miserable failures that produced no lasting effects. Good luck to you.

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@elsie37

Kathysway, sorry you find yourself in this situation. Having taken several of these drugs and having read extensively about the side effects and the experiences of others, it seems there is no rule of thumb regarding symptoms.. Every person reacts (or does not) differently and every drug can affect you in surprisingly different ways. My approach was to give one drug a try and see what happens. If it's no good, on to the next one. There are 5 that a post-menopausal woman may take, but do consult your doctor. If all are intolerable, then at least you know you gave the drugs a shot. One of them did prove to be acceptable to me after some miserable failures that produced no lasting effects. Good luck to you.

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@elsie37, what drug did you finally settle on? I am currently on a six week vacation from Anastrozole to see what my life USED to be like before that drug. I've been on it for a year and a half. I'll probably go back to it at the end of 6 weeks, but I'm interested to know your experience with various other drugs. You can send me a private message if you prefer.

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@sparklegram

@elsie37, what drug did you finally settle on? I am currently on a six week vacation from Anastrozole to see what my life USED to be like before that drug. I've been on it for a year and a half. I'll probably go back to it at the end of 6 weeks, but I'm interested to know your experience with various other drugs. You can send me a private message if you prefer.

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Sparklegram, you’ve probably read my posts about being off cancer drugs. For me, it’s a total night and day difference. I feel better, have more energy, and my brain fog is gone. Just being able to think more clearly is amazing!!! I’m scheduled to go back on Tomoxifin after our vacation in September. I’m dreading it. I’ll for sure be requesting the very lowest dose that’s effective!

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@sparklegram

@elsie37, what drug did you finally settle on? I am currently on a six week vacation from Anastrozole to see what my life USED to be like before that drug. I've been on it for a year and a half. I'll probably go back to it at the end of 6 weeks, but I'm interested to know your experience with various other drugs. You can send me a private message if you prefer.

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finally found out what meds Ill be taking yesterday hormone blocker is Arimidex and then Ill be doing a IV every 6 months of Zometa so now I have to get a dentist clearance for that it can cause problems with my jaw and teeth fun fun fun another side affect which is rare but it has happened from what the dr said is someone got a broken bone not even doing anything just snapped does anyone else here have any input on this thank you.

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@kathysway

finally found out what meds Ill be taking yesterday hormone blocker is Arimidex and then Ill be doing a IV every 6 months of Zometa so now I have to get a dentist clearance for that it can cause problems with my jaw and teeth fun fun fun another side affect which is rare but it has happened from what the dr said is someone got a broken bone not even doing anything just snapped does anyone else here have any input on this thank you.

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@kathysway Kathy – you just need to be sure if you need any dental procedures, i.e. crown work, root canal, tooth implantation, etc., that that is completed and healed prior to Zometa. My oncologist said that jaw necrosis is very rare. My suggestion for you as well is to plan your Zometa about future vacations. I just had mine last month so that the following one would not interfere with Christmas or New Year's. You may or may not feel like you've had the flu for a few days, but plan your life around it. The IV doesn't take that long.

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@trixie1313

@kathysway Kathy – you just need to be sure if you need any dental procedures, i.e. crown work, root canal, tooth implantation, etc., that that is completed and healed prior to Zometa. My oncologist said that jaw necrosis is very rare. My suggestion for you as well is to plan your Zometa about future vacations. I just had mine last month so that the following one would not interfere with Christmas or New Year's. You may or may not feel like you've had the flu for a few days, but plan your life around it. The IV doesn't take that long.

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thank you for your information

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@colleenyoung

@kathysway, I changed the title of your discussion to be specific to your question. @sparklegram is right. There are several discussions currently in the Breast Cancer group focused on hormone blockers (aromatase inhibitors, called AIs and selective estrogen receptor modulators, called SERMs).
There are 3 AIs
– Arimidex (chemical name: anastrozole)
– Aromasin (chemical name: exemestane)
– Femara (chemical name: letrozole)

There are three SERMs:
– tamoxifen in pill form (also called tamoxifen citrate; brand name: Nolvadex) and in liquid form (brand name: Soltamox)
– Evista (chemical name: raloxifene)
– Fareston (chemical name: toremifene)

Here is a list of related discussions in the Breast Cancer group:
– Anastrozole…has anyone had an increase in glucose or cholesterol https://connect.mayoclinic.org/discussion/anastrozole-has-anyone-had-an-increase-in-glucose-or-cholesterol/
– Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/
– Completed 5 years of anastrozole. Withdrawal symptoms? Side effects? https://connect.mayoclinic.org/discussion/stopping-anastrozole-after-5-years-withdrawal-symptoms/
– Can anyone speak to the pros/cons of arimidex vs. tamoxifen? https://connect.mayoclinic.org/discussion/can-anyone-speak-to-the-proscons-of-arimidex-vs-tomoxifen-ive-been-on/
– Cognitive impairment, forgetfulness with hormone blockers https://connect.mayoclinic.org/discussion/cognitive-impairment-forgetfulness-with-hormone-blockers/
– Timing of HRT, anastrozole – taking day or night? https://connect.mayoclinic.org/discussion/timing-of-hrt-anastrozole-taking-day-or-night/
– Letrozole https://connect.mayoclinic.org/discussion/letrozole/
– Stage 1 Invasive Ductal Carcinoma: Exemestane and side affects https://connect.mayoclinic.org/discussion/exemestane-and-side-affects/
– Aromatase Inhihibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/
– What problems have you had with Tamoxifen?
– Tamoxifen 10mg vs 20mg https://connect.mayoclinic.org/discussion/tamoxifen-10mg-vs-20mg/

Kathy, this is a crazy list of discussions. I provide them only as an inventory of the support you have here on Connect. As Sparklegram says, not everyone gets side effects. Women who don't have side effects tend not to write on the forum as they don't need support. I hope that you are one of them. As you get ready to move to a new treatment after radiation, what questions do you have? What questions would you like to prepare for your oncologist?

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Hi Colleen,
Thank-you so much for the links, especially for the Hormonal Therapy Side Effects Comparison Chart. I’m about to start taking an Aromatase Inhibitor. My oncologist said I could choose any of the three. But with all the serious side effects, and to make that decision, I’m looking for randomized controlled trials (RCT) that answer these questions:
1. Are there links to RCT trials that demonstrate the efficacy of these drugs > Arimidex (anastrozole) vs. Aromasin (exemestane) vs. Femara (letrozole) vs. a control group of women who do not take an AI? It would be ideal to see any more recent reports that reevaluated the efficacy and where more years of data were included.
2. My oncologist indicated the standard AI dosage is exactly the same for every woman regardless of stage/grade/type of estrogen positive breast cancer. Are there any RCT studies available where the dosage was evaluated based on the severity of the cancer? Did the trials dosage determination include that criteria too?
3. The oncologist also noted the standard dosage is the same if the woman weighs 90 or 395+ pounds. Are there any RCT studies available where the dosage was evaluated based on the patients weight or BMI?

I’ve looked for this info on many websites including the FDA, NIH, Mayo clinic and more without luck and truly appreciate any info you may provide.

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@lindalm

Hi Colleen,
Thank-you so much for the links, especially for the Hormonal Therapy Side Effects Comparison Chart. I’m about to start taking an Aromatase Inhibitor. My oncologist said I could choose any of the three. But with all the serious side effects, and to make that decision, I’m looking for randomized controlled trials (RCT) that answer these questions:
1. Are there links to RCT trials that demonstrate the efficacy of these drugs > Arimidex (anastrozole) vs. Aromasin (exemestane) vs. Femara (letrozole) vs. a control group of women who do not take an AI? It would be ideal to see any more recent reports that reevaluated the efficacy and where more years of data were included.
2. My oncologist indicated the standard AI dosage is exactly the same for every woman regardless of stage/grade/type of estrogen positive breast cancer. Are there any RCT studies available where the dosage was evaluated based on the severity of the cancer? Did the trials dosage determination include that criteria too?
3. The oncologist also noted the standard dosage is the same if the woman weighs 90 or 395+ pounds. Are there any RCT studies available where the dosage was evaluated based on the patients weight or BMI?

I’ve looked for this info on many websites including the FDA, NIH, Mayo clinic and more without luck and truly appreciate any info you may provide.

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Welcome to Connect, @lindalm. I can only imagine the many questions you must have before making a decision! Here’s some information I found – although this may not pertain specifically to RCTs, they are all recently published studies based on clinical trials – are you ready for a lot of reading? 🙂

Q1.
– First Trial of Three Aromatase Inhibitors: Similar Efficacy, Safety https://www.medscape.com/viewarticle/894890
"This is also the first trial to compare an up-front treatment schedule with a switch schedule using anastrozole, the study authors note. The up-front schedule consisted of 5 years of treatment with aromatase inhibitors; the switch schedule consisted of 2 years of treatment with tamoxifen followed by 3 years of treatment with aromatase inhibitors.”
– Risk–benefit ratio requires ‘highly individualized’ plan for extended aromatase inhibitor therapy http://bit.ly/303EY7x

Q2.
– Optimizing the Use of Aromatase Inhibitors https://www.cancernetwork.com/supplements-2009-breast-cancer/optimizing-use-aromatase-inhibitors
– Aromatase Inhibitors in Gynecologic Practice http://bit.ly/2N5DSEC
"What is the best sequence, timing, and duration of AI use? Conclusions and recommendations of The American College of Obstetricians and Gynecologists”

Q3.
– Efficacy of letrozole, anastrozole linked to BMI http://bit.ly/33BdmsE
– The predictive impact of body mass index on the efficacy of extended adjuvant endocrine treatment with anastrozole in postmenopausal patients with breast cancer: an analysis of the randomised ABCSG-6a trial https://www.nature.com/articles/bjc2013367

I hope this helps, @lindalm. We look forward to getting to know you – could you share a few more details about your health?

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@kathysway

finally found out what meds Ill be taking yesterday hormone blocker is Arimidex and then Ill be doing a IV every 6 months of Zometa so now I have to get a dentist clearance for that it can cause problems with my jaw and teeth fun fun fun another side affect which is rare but it has happened from what the dr said is someone got a broken bone not even doing anything just snapped does anyone else here have any input on this thank you.

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Hi- I have been taking anastrozole as my estrogen blocker which can soften my bones. I just had my first infusion of Zolendraic/Zometa that is supposed to strengthen my bones. My dr husband did some research and told me that this infusion is supposed to result in 70% fewer vertebral fractures and 40% fewer bone fractures. These seem like good odds to me. Have you started your Zometa? Of course when I read about all of the side effects it is frightening, but I just felt a little out of it after my first treatment-thank goodness. I just took it easy for a couple of days. Good luck!

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dmgweiss @dmgweiss
I've had 3 "bone glue" Zometa infusions. They must be doing something right as I do have osteoporosis and have had two "whoppers" of falls that were quite bad but no broken bones. The nurses do slow down my infusions from 30 minutes to 45 minutes as I had trouble with my second infusion and started to faint. With the longer infusions, I don't seem to have a problem.

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