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Old 06-01-23, 02:07 PM  
Negin
 
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Originally Posted by Vintage VFer View Post
I had good results rebuilding bone when using low-dose estrogen patches plus progesterone pills. I had no side effects at all from the patches. But, they don't want to prescribe them for someone over the age of 65
This is not good news at all. I've been happily using both patches and progesterone. I was hoping to continue to do so forever. I know that once I stop, I'll lose all the benefits. I take both for multiple reasons - osteoporosis is only one of them. Thanks for making me aware. This just stinks.
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Old 06-02-23, 02:58 PM  
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Earlier this year, I had surgery for breast cancer (Stage 1 invasive ductal carcinoma; I had a lumpectomy; no chemo; 16 sessions of radiation). The day after radiation was completed I started taking Anastrozole (anti-estrogen hormone therapy). They coupled it with an infusion of Zometa a few weeks later. The Zometa is intended to help offset the potential bone density loss of the Anastrozole. The evening of the infusion I was feeling pretty woozy. The next day I was soooo sick. Unfortunately I had a bout of Covid right before radiation began; with the Zometa I was just as sick as with Covid. The third day I plunged into a deep depression. I thought I was going to die. I thought to myself that I will NEVER go thru that experience again. (My primary care physician has diagnosed that I had a severe allergic reaction to the Zometa and may even be allergic to the Anastrozole as well.) I'm currently going round with the oncology doctors. My survival rate with having had breast cancer is 92%. Taking anti-estrogen bumps that up 0.8%. Adding a bisphosphonate such as Zometa bumps it up 0.3%. So a 1.1% additional benefit of survival (when my survival rate is already 92%)??? Why in the world would I put myself through that? I couldn't even got out of bed. So the cancer center is like in full-force offense trying to get me to change my mind and take "something".
Everyone's experience with taking medications is different. We need to take it upon ourselves to do as much research as possible, consult with others in similar situations, and follow our gut instincts. I really think -- I hate to say this -- is that the Pharma / medical institutions think that since we're women, we'll just be compliant and go along with what they tell us to do.
-Anita
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Old 06-02-23, 04:00 PM  
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Originally Posted by FirmDancer View Post
Earlier this year, I had surgery for breast cancer (Stage 1 invasive ductal carcinoma; I had a lumpectomy; no chemo; 16 sessions of radiation). The day after radiation was completed I started taking Anastrozole (anti-estrogen hormone therapy). They coupled it with an infusion of Zometa a few weeks later. The Zometa is intended to help offset the potential bone density loss of the Anastrozole. The evening of the infusion I was feeling pretty woozy. The next day I was soooo sick. Unfortunately I had a bout of Covid right before radiation began; with the Zometa I was just as sick as with Covid. The third day I plunged into a deep depression. I thought I was going to die. I thought to myself that I will NEVER go thru that experience again. (My primary care physician has diagnosed that I had a severe allergic reaction to the Zometa and may even be allergic to the Anastrozole as well.) I'm currently going round with the oncology doctors. My survival rate with having had breast cancer is 92%. Taking anti-estrogen bumps that up 0.8%. Adding a bisphosphonate such as Zometa bumps it up 0.3%. So a 1.1% additional benefit of survival (when my survival rate is already 92%)??? Why in the world would I put myself through that? I couldn't even got out of bed. So the cancer center is like in full-force offense trying to get me to change my mind and take "something".
Everyone's experience with taking medications is different. We need to take it upon ourselves to do as much research as possible, consult with others in similar situations, and follow our gut instincts. I really think -- I hate to say this -- is that the Pharma / medical institutions think that since we're women, we'll just be compliant and go along with what they tell us to do.
-Anita
My mom had hr+her2- negative breast cancer in her early 70s (way post-menopausal) just like her mother did. Lumpectomy, radiation, and the drug she was first on was Anastrozole. Eventually she started having really bad joint pain (more than the usual). She went to her PCP to see if she needed pain mgmt or something (my mom never takes pain meds other than ibubrofen, etc.) and the PCP referred her back to the oncologist and they switched her to letrozole and magically the joint and muscle aches and pain went away (or at least just back to her usual level).

Just mentioning this in case you or anyone else experiences something similar. Sometimes there are other options.

The doctors have never suggested any bone stuff for my mom but we tend to have really strong bones in our family. Genetics I guess. The knee joints sometimes wear out but the bones are good, even when fallen on. They did do a DEXA scan before she started the estrogen-stripping drug and I think there was a follow-up scan recently.

Sorry you are going through this. I imagine it's difficult when one is at odds with their treatment team/medical establishment.

For example, I think I have to have a talk with my PCP this year regarding not wanting my breasts biopsied every year. So far I'm 41 and have had two annual mammograms and both times they've resulted in extra imaging and biopsies and the doctors admitted there is very little risk of it actually being cancer both times but they do it just in case. I don't mind maybe every 2-3 years doing the ultrasounds and biopsies or if they see an actual tumor on the screening mammogram but otherwise, I need a break. I almost told my PCP this year I didn't want to do the recommended follow-ups but she's a new PCP I just started with and I didn't want her thinking I'm anti-western medicine because I'm not.

(Sorry if TMI about me.)
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Old 06-02-23, 04:00 PM  
prettyinpink
 
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Thanks for starting this topic and thanks to those sharing experiences.

It’s hard to know what to do. DEXA is recommended only for over 65 unless there are risk factors. I don’t have risk factors, and neither do most that I know who are getting one at menopause or even before, yet everyone is doing it, either requesting or recommended by doctors. One doctor said that not taking estrogen is a risk factor, but that isn’t listed anywhere I can find, and if that’s true, why isn’t DEXA recommended for everyone who is postmenopausal?

I’ve said no just because I’m young to consider meds. Maybe later. Maybe there will be better understanding of factors that better predict fractures, rather than the situation we have now where treatment is mostly based on bone density. I don’t think it would do me any good now to know that I am osteopenic. I decided a while back to live as though I am, lift weights, do some impact as I am able, watch vitamins D and K, and eat well. I did what I was told and took lots of calcium in my 20’s and 30’s, and it turns out that was probably not great, certainly not the most impactful thing I could have done.

I am sorry for those who are further along in the journey and facing decisions about what to do.
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Old 06-02-23, 04:12 PM  
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I would stay away from the IV osteoporosis medications they are the worst. Can cause necrotic bone after extractions. It stays in your body for YEARS. A patient has lost half her jaw. Fosamax is worse if you are on it for several years. Personally I will never take them.
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Old 06-02-23, 05:57 PM  
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I would stay away from the IV osteoporosis medications they are the worst. Can cause necrotic bone after extractions. It stays in your body for YEARS. A patient has lost half her jaw. Fosamax is worse if you are on it for several years. Personally I will never take them.
I've spoken to a few dentists who are not too enthusiastic about some of the bone drugs.
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Old 06-03-23, 07:06 AM  
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pgun3 and Alta - thank you for your comments related to dental work. Yeah, before my Zometa infusion, I had to be cleared by my dentist. Apparently many people have their osteoporosis infusions delayed because you have to have any possible dental work done in advance. My dentist, who I rely on for advice on health in general, was very concerned. I'm on a strict dental hygiene routine. You both have given me more to think about ... I don't mean to be morbid at all, but we all have to die sometime. I'd rather do what I can to stay healthy and strong, and live as good as a life as I can, rather than pour harmful "medicines" into my body that could do other, severe damage.
-Anita
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Old 06-03-23, 12:58 PM  
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FirmDancer/Anita - I somehow missed your earlier post. I'm so sorry you had to go through that! I'm praying for your best outcome. (((hugs)))

Doctors want to give us drugs and then forget about us. In the meantime, we are home alone having to deal with the aftermath. If you question the drugs, they label you as "non-compliant." And trying to get a follow-up appointment is often difficult.

I went through a few years of GERD. The GI doc had me on Prilosec 2x per day. When it didn't help, he suggested 3x per day! I then became non-compliant. I later read that Prilosec is bad for bones as it affects calcium absorption. I did have bone loss from that. He never said a thing about that.

I'm not anti-drug by any means. I just have trouble with some doctors (who sometimes get kickbacks from drug companies for writing prescriptions).
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Old 06-03-23, 01:49 PM  
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I'm not crazy about going on drugs, but my grandmother suffered for decades with spinal fractures, and my mother has been for over a decade now. It's what stole their quality of life in their later years, and made it a living hell. That scares me more than the drugs.
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Old 06-03-23, 03:56 PM  
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I took Evista for osteoporosis for 7 years, starting at age 52. After my first two years on it, my DXA scan showed no change (this was actually good as it meant things were stabilized after several years of progressive loss). After four years on it, my DXA scan showed a small improvement. After six years on it, I had significant improvement - enough to be out of osteoporosis and back into osteopenia range.

Unfortunately, at 59 I've developed high blood pressure and have had to start taking meds for that. I'm not blaming Evista for my blood pressure problem, but dealing with high blood pressure has made me more aware of and less comfortable with blood clot/stroke risks. So, with my Endo's knowledge and consent, I've recently stopped taking Evista. I will go without medication for osteo for the rest of this year, and then we will talk about other options after my DXA scan next year at 60. I'm not looking forward to that conversation as I don't have good feelings about Prolia or Reclast or any of the oral bisphosphonates.

The only side effect I had from Evista was hot flashes (which happened on a pretty much daily basis), but they were bearable.
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