AI+OS= osteoporosis at age 44. :/

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cider8
cider8 Member Posts: 832

I started Zoladex and Arimidex after active treatment of my second primary BC. That was almost 2 years ago. My DEXA shows I went from osteopenia to osteoporosis in my spine. It's at a -3.2; I'll have to double check. I have not been exercising as I shoul, mostly due to fatigue. My mom has been trying to treat her osteoporosis for several years and side effects of Rx have been intolerable for her. I seriously do not want another med with miserable side effects! I have hypothyroid, which my PCP treats by checking TSH every year. My MO's NP suggested I find a good endo to treat my thyroid and bone density.

I think this might me a kick in the butt to get my butt moving. But I don't think walking and lifting is going to fix it! I've been on 5,000iu D3 for 5-6 years (before cancer) and a good food based multivitamin.

I'm curious what others do for osteoporosis at a young age.


ETA: My t-scores for spine went from -1.9 to -3.1. Left femur -2 to -2.2. Right femur -1.7 to -2.3.

Comments

  • sugarplum
    sugarplum Member Posts: 318
    edited September 2015

    I was already osteopenic prior to my diagnosis in 2006 at age 50, so after 2 years on Arimidex watching my density take a dive they put me on annual infusions of Reclast (with no side effects to speak of). I had 6 years of that until my DEXA last December showed a 5% decrease in my lumbar spine - it looked like Reclast was no longer up to the challenge as my T-score was -2.3. It was recommended that I switch from Arimidex to Tamoxifen in an attempt to rebuild my bones, but so far I haven't been able to bring myself to do so. I'm worried about how bad my next DEXA is going to be however, so will probably end up making the change before the end of this year (which will make 9 years on Arimidex). In the meantime I've changed my exercise routine on the advice of a physical therapist (no more crunches or twisting my back) and just keep praying that I'm not doing irreversible damage by staying on the AI as long as I have.

    Not sure how this helps but that's my story...!

    Julie

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    I'm not as young as cider (like sugarplum, born closer to the peak of the 'baby boom' years) but saw my bone density decline by 3% after six months on letrozole. Not on the verge of osteopenia yet so the results of my annual DEXA scan this fall will be interesting and perhaps influence how long I continue aromatase inhibition.

    Undoubtedly you both know this however for anyone else reading here, the importance of adequate calcium intake should be stressed. Most multivitamin/mineral tablets don't have enough room to accommodate a full dose and dietary sources have limitations unless lots of dairy products are consumed.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited September 2015

    I see an endocrinologist who specializes in bone health. (so I agree w/ your MO's NP). I see this doc once every two years for a consult and he reviews my DEXA scans, diet, exercise, meds, etc. His opinion is that the effect of exercise tends to be "subtle" (his word), especially compared to the potential impact of some meds and perhaps an underlying thyroid condition.

    Have you considered switching to tamoxifen? I began tamox when I was pre-meno, had some bone loss, but now that I am post-meno, I've had a significant increase of bone density because I'm staying on tamoxifen; my spine is better than when I first started tamox, back when I was pre-meno, so it recouped all that loss, and a bit more. (I have a rare bone conditions and can't take bisphosphonates, so AIs aren't an option for me).The endocrinologist said that tamox not only improves bone density but also bone quality--fewer fractures. (which, ultimately, is what we care about).

    Not sure if you're aware, but there's a section of this discussion board (below) that's dedicated to bone health. Just an FYI that you might find more info there and/or get more responses. I remember some members there also had thyroid issues, which can impact bone density. When they treated their thyroid, their bones improved.

  • cider8
    cider8 Member Posts: 832
    edited September 2015

    thanks. I didn't realize there was a bone health board when I posted. I took tamoxifen for 1.5 yr but got my second primary while taking it. No go on tamoxifen and no way my MDA MO will let me stop AI. I see my local MO in about a month. In the mean time, I will try to get recs on an endo who is good with bone and thyroid. My understanding is a lot of endos are better with diabetes.

    My aunt has been taking fosamax while on arimidex. She told me that has been the cause of her hair loss. :(

  • MaryJC
    MaryJC Member Posts: 350
    edited September 2015

    hi ladies, I'm not even two weeks into AI but prior to starting I purchased Bone Maker from Amazon. Based on the reviews I thought best to start taking now. I'm posting the link. Reviews says people reversed their osteoporosis to osteopenia and others from osteopenia to normal.

    Doctor's Best Strontium Bone Maker (340mg Elemental), 120-Count https://www.amazon.com/dp/B000Y6W2E2/ref=cm_sw_r_awd_uTD9vbMG3WF8Y

    Praying for great results. And I too need to add more calcium as well. Hope this helps!

  • windingshores
    windingshores Member Posts: 704
    edited September 2015

    Strontium has been used in Europe as Prolos (strontium ranelate) but in the past year there were warnings about blood clots for those at risk. I am unable to do biphosphanates, calcitonin or Forteo and Prolia scares me. I stopped strontium but just bought some more. I have to do something: I was already -3.5 on my hip before Femara! The recommended dose for Doctor's Best is two, 680mg total.

  • MaryJC
    MaryJC Member Posts: 350
    edited September 2015

    Drs Best is Citrate where the Rx version, ranelate contains a synthetic additive. They did so, so they could market it as a drug which needs a patent to do so as strontium is an element. So it makes sense that synthetic versions would cause SEs similar to the big debate on synthetic pot. But as I said prior I hope it helps. Take care.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited September 2015

    I have just experienced the same going from osteopenia to the beginning of osteoporosis I my spine -2.5. I have been on letrazole for six months. Now need to see a specialist. Other areas were -1.2 and -1.5. I have been taking d3 and calcium for many years but I guess it hasn't done much over the past 6 months. Have any of you been diagnosed with high cholesterol as well?

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    Abnormal lipid panel readings are another well known side effect of aromatase inhibition, related to the drug's mechanism of action. In my way of thinking, when the substrate (base molecule) is not being converted to estrogen, it has to go somewhere and cholesterol has a similar structure so those levels go up.

    Anticipating this reaction, I had mine under control with a low dose statin but had to double the dose after several months on letrozole. I prevent muscle aches with coenzyme Q. Two more things to take every day...

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited September 2015

    how long does it take for your cholesterol to go up? I've been on it for six months and haven't been tested .

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    TP (sorry for abbreviating your screen name with those initials!): prior to recently, I had the fasting lipid panel run annually. I requested a check at 6 months which is the time interval many internists will use especially after a change in statin dose or for someone with a strong family history of heart disease. Liver enzymes are also assessed when on cholesterol medication. My oncologist tracks those twice a year along with CBC, etc.

    Perhaps your doctor would order labs if there has been a trend you are concerned about. I used to joke that my number before treatment was perfect at 300 - for a game of bowling - however that's way too high for optimal cardiovascular health...

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited September 2015

    Thanks vinrph.. .looks like now I am worrying about my CA125 results that I just got back today. It was elevated about the normal. I have an ovarian cyst that I have been following up on. CA 125 results were always normal. Now that I have decided to book the surgery to have the ovaries out, the test comes back elevated....

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    Hope that CA 125 elevation is just a quirk. As you probably realize, those numbers don't always denote a problem. Still, since you have other ovarian issues and are going ahead with a plan to remove them, does your surgeon automatically do a peritoneal wash?

    I understand that gynecological oncologists take this extra step, along with having meticulous pathology performed in order to see if any rogue cells are hiding out. A community based physician, on the other hand, may skip those procedures for lower risk women, assuming nothing nefarious is going on...

    At least the ooph should be an easier recovery than mastectomy. Some gals have it done, rest up over the weekend then go back to work on Monday!

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited September 2015

    vinrph...what is a peritoneal wash? Had my ultrasound this morning and the tech said the cyst and fibroids are still there...all about the same size... so hoping the results are the same that they have been for the past 5 or so years that I have been following up on it.... Not sure what ob/gyn will do if results are the same...she mentioned ob/gyn oncologist.. but not sure why if results come back okay. GUess I will just have to wait.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    With fibroids, are you also having a hysterectomy? I take back my fast recovery comment in that case however perhaps you'll have an uneventful post-op and be back on your feet quickly! Sorry to our original poster or anyone else still following this thread for our digressions from the bone health topic...

    Peritoneal wash basically means they flush the abdominal cavity with a good amount of sterile fluid then send it to the lab for analysis. This is something a gyn onc specialist would do fairly often which means their staff & facilities are accustomed to the process, handling the samples, etc. A community hospital, probably not so much.

    Congrats on the lesions remaining stable. Best wishes for arriving at a plan and coming to a conclusion soon.

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