Bone density worsening on AI & post chemo

@ksue3 I’m 71 on Reclast for bones, three years post BC surgery & radiation, no chemo. I’m on Tamoxifen, which is somewhat protective of bones, but I was at osteoporosis at BC diagnosis. You might want to consider that you want to protect the bone you have with something like Reclast - although there are bone builders, they can have more side effects.
My local endocrinologist and MD Anderson rheumatologist seem happy with where I am, now in osteopenia and stable.

I did see the oncologist. She wants me to stay the course of Exemestane of course. The referral to the university hospital endocrinology is in process. Usually takes a while to get an appt. I told the oncologist that I felt caught between a rock and a hard place. She said, "You are, at age 85". Well, so no real great path to follow. For now, I continue with Exemestane.
I don't know if Reclast will be offered. I am curious as to side effects with that drug. Anyone out there on it and can tell me how they are doing on it?

I’m 71, just had my third annual infusion of Reclast with no real side effects. I’m glad I’m on it, because if any missed breast cancer cell decides to moves its way over to my bones the Reclast is known to help prevent cancer cells from taking hold.
The first two infusions I had mild flu symptoms, ended on the third day. The last time I did have some nausea and eye aches that stopped 6 hours after the infusion but that was because the nurse pushed the drug in 15 minutes or less - it was way too fast. And she was way too glib about the whole thing - telling me I was not like others who didn’t have side effects after the first dose. I didn’t realize until it was done that she had set the infusion rate so fast.

I’ll still do Reclast in the future because I think the benefits outweigh the risks. All the women in my family have osteopenia/porosis. My mom had spinal fractures in her 80s and 90s, extremely painful. I want to avoid that.

I’m guessing I won’t do another infusion for two years. I’ll discuss the infusion rate with my endocrinologist- and I’ll be very vocal at the infusion center next time.

First, my surgeon told me 25% of women stop Anastrozle due to side effects. She had no real stats on the % of women who stop have a reoccurrence. I more than understand you ksue3. One of my surgeons, when discussing implants after a bilateral mastectomy, said to me "you are 70, you know". I answered "yes, I know but my mind is 35". I ended up not going for the implants simply due to all potential complications (or none) down the road, I didn't want to take the chance. You said your tumor is grade 3...do you mean the stage? With a oncotype of 37 you are considered in the high range, mine was 14, with one positive node. I more than hear you about your bone density issues. I too am worried about this. But my thoughts are these: The only treatment for my cancer is an aromatase inhibitor (right now). I can work on increasing my bone density. There are options to do this - walking, stair climbing, sitting up and down from a chair without supporting yourself (squats), a diet rich in calcium/supplements, yoga for balance issues, use of a cane/walker for support and strength training. Other options to increase bone density are available for you. There is only ONE option (right now) to help prevent cancer reoccurrence. That's my personal answer right now...do I like it? No!
I can help myself NOT to have a fall. I have NO control for cancer to return my AI the best defense right now.
Yes, it is a tough decision. Only you can weigh your options and which directions you want to pursue.
And rubyslippers: I am a retired nurse and disheartened to hear about your experience with the RN who set the infusion rate of Reclast too fast, not to mention her attitude and putting "guilt" on you. Shame on her/him!
Find out exactly what the rate should be and insist on it! I had a similar experience in the ER with a concussion headache...the protocol was a headache "cocktail" and the RN pushed the Benadryl IV way too fast, simply because she wanted to get it over with. The result? I developed immediate chest pain and was starting to
lose consciousness and she even downplayed this. I ended up asked for the IV medications that worked in the past for me. One must always be their best advocate! Or have someone to advocate for them.
Good for you Ksue3! Stay invested in Life...life is for the living...until it's not. You Go Girl!

I declined AI’s because I have osteoporosis, and asked my oncologist about Tamoxifen instead. Tamoxifen is not routinely offered to post menopausal women, you have to ask about it. Here are a couple of links with more information.

Good for you for advocating for yourself!
https://www.cancer.org/cancer/types/breast-cancer/risk-and-prevention/tamoxifen-and-raloxifene-for-breast-cancer-prevention.html
https://www.cancer.org/cancer/types/breast-cancer/treatment/hormone-therapy-for-breast-cancer.html

I had stage 1B, Grade 3, Oncotype 34, Total Nottingham of 9, Ki-67 was 65%, 98% estrogen positive. I can't find it now but I seem to recall that the stage ended up a II something. I will have to research that more. Those numbers all add up to high risk and more aggressive than expected, especially in my age group. As much as I try to talk myself out of Exemestane, I know it is my hope of fighting this disease. I consider myself cured at this time. Your note, as well as the others here, really did help me. Thank you Briarrose. I am a retired nurse too. I was never exposed to chemo patients so this whole thing is new to me. My cancer was on the right. My best veins are on the right. So, I am very protective of my left arm veins and want a really good technician to do my blood draws. I actually get nervous before draws. I wrap my arm in a fleece jacket and drink lots of water before labs. After this long a time I finally think that I have faced my mortality. I don't like it one bit. My family doesn't live near and I so want to spend time with them. My GI track has never really recovered from everything. So that is a concern when away from my apartment. I am mostly on a FODMAP diet. Well, not much on there to enjoy but managing. Am doing better so hope to hop on a plane this Fall to see a son and grandson. Adjust is a key word for this path we are all on. I appreciate each and every one of you.

I am not sure...what is a total Nottingham of 9 or Ki-67 of 65%?
Is this another tumor marker? I only had the Oncotype testing done.
My cancer was in both breasts...please refresh my memory - did you get a bilateral mastectomy?
What happened to your GI track? Damaged from chemo? My only treatment is the Anastrozole. Yes, the AIs are our best chance of stopping a reoccurrence - despite the multitude of serious side effects. I don't know if I have faced my mortality. I was so shocked when diagnosed I immediately went into a denial and think I am still in it 3 months later. The cancer was picked up on my annual mammogram, no symptoms whatsoever. I had to have 4 biopsies, all positive. My only child, my son, lives in another state also. He left home for college at 17 and never looked back...I miss him terribly and feel I want to be "around" him now. But we can only fly to each other.
Of course, he visits me & my husband (not his father) several times a year but I am finding it's not enough now at age 70. I also had heart disease, brain abnormalities. Ironically I hope to put my big girl pants on and fly alone to see him this fall also. My husband has a fear of flying so I will go alone. And to add to this all, he is currently dealing with mental health challenges. A heart-break for me...but he is 40 years old and does not listen to any help I offer. Yes, adjust is the right word for the path we are on. In more ways than one. It certainly helps to know other women are in my shoes. The very best to all!

I was a grade 2 tumor, ki67 of 25%, oncotype+, Hr+ (er 100%). Her2- went through chemo, radiation and then ai. First dexa scan (before all this was found - done same day as mammogram that showed the mass) showed osteopenia. Put on calcium/D3 once daily. About 14 months later, with 5 months on Anastrazole, twice daily on calcium/D3, scan still showed osteopenia. I declined bone meds (Prolia or Reclast) so he elected to do another scan in 1 year. Then because of side effects, changed to exemestane Nov last year. My research showed that while both can affect bones, exemestane does less damage than Anastrazole. Currently I’m on calcium/D3/K2 twice daily, joint supplement - UC II cartilage with boron, fish oil, weights 2-3 times/week (not heavy weights max 5-8#), walking at least 5 days a week. Last dexa scan done June 2 (so 8 months off Anastrazole, 7 months on exemestane) and it was normal. So the exemestane may still be the better option for bones. Most likely won’t reverse the osteoporosis but may keep it from progressing more than the Anastrazole.