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.

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@farmgirl1556

I am so sorry you have Mets to the bones!! How was that diagnosed? I have a fear of that happening to me! I will pray you are feeling better !!!

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Good morning fg. My bone mets were found when they did a bone scan. First identified as possibly normal stress fracture in my left leg as I had a pretty severe fall with my dog (on ice) a few yrs. back. Also similar looking injury to my upper arm on the scan. They then did a PET Scan to look into areas of interest along my spine and such and they "lit up" on the film as they do when it's cancer. I honestly thought all along they were just old injuries and wrote off the aches. Now I have to be careful what I do that I don't take a fall. That I guess is the reason to get Xgeva shots with the Letrozole since Letrozole I guess weakens the bones. I'm still learning all of this stuff so bare with me. Thanks for your well wishes. I'm doing pretty good and can only hope it stays this way for a long while.....and you as well.

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@mom23boys

Good morning fg. My bone mets were found when they did a bone scan. First identified as possibly normal stress fracture in my left leg as I had a pretty severe fall with my dog (on ice) a few yrs. back. Also similar looking injury to my upper arm on the scan. They then did a PET Scan to look into areas of interest along my spine and such and they "lit up" on the film as they do when it's cancer. I honestly thought all along they were just old injuries and wrote off the aches. Now I have to be careful what I do that I don't take a fall. That I guess is the reason to get Xgeva shots with the Letrozole since Letrozole I guess weakens the bones. I'm still learning all of this stuff so bare with me. Thanks for your well wishes. I'm doing pretty good and can only hope it stays this way for a long while.....and you as well.

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@mom23boys, You may also be interested in these discussions on Connect.
- Metastatic breast cancer, in bones: Trouble eating https://connect.mayoclinic.org/discussion/medistatic-breast-cancer-in-bones/
- Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

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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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