Osteoporosis

Hi there @kamada. All I can add it this. I had a total hysterectomy at age 28 and blood tests at age 37 found me to be very much post menopausal,,,like years before, I was told. As well, I've been on prednisolone for over ten years now due to an autoimmune disease which damages all the connective tissues in my body..particularly the joints, tendons and blood vessels. Another autoimmune disease has me on warfarin, which means I cannot take non steroidal anti inflammatories Add letrozole to the pot, stir and serve, and the result is (no surprise) I have very bad osteoporosis. Three rib fractures at different times without fall or injury. I've been on Prolia injections since 2017 and my jaw has yet to rot or fall to pieces. (Sorry about that my dear hubby....but you can still hope that something will eventually stop the yabbering from me). I've had some improvement in my bone density but am still osteoporotic...just bad now rather than shockingly so. I use a wheeled granny walker when out of the house as I know if I fall, then that would be a disaster. I have very few side effects other than about a week after having it, I get the collywobbles and feel quite nauseous. It passes in about three or so days.

This is an interesting thread. I am in my 70s and had ER+ PR- HER2+ cancer. Chemo and rads plus herceptin (last infusion a couple of weeks ago - exciting after 15 months of various infusions 😊) and started letrozole in April. Due to complete hysterectomy at 43 had osteopenia before all this started and had a base line bone density test done before starting chemo.  Just had another one and now have osteoporosis in spine and osteopenia in hips though they showed marked decline. I expected to be given something stronger than caltrate and vit d which I have been taking for years but onc said the same about prolia as your GP @JulieVT11 and he doesn’t like the side effects of the others (made me smile coming from an onc). He said that tamoxifen is good for bone density and will stop the decline and even improve it. I am a bit concerned about following this path and intend to discuss it with my GP but am wondering if anyone else has tried this path and what happened to their bone density. The last thing I need atm or ever is a serious fracture. I am also a bit concerned about the efficacy of tamoxifen compared to letrozole in preventing recurrence as tumour cells were 95% ER+. Would be very interested in any info you ladies may have on either issue. 

@Caibo My oncologist sent me for a bone density scan before I started Letrozole. Two years on I'm having another one this week to see how I'm travelling. I didn't pay for my first one, at the local public hospital. I'm going there again on Thursday and haven't been informed of any charges. Small waiting list involved and it got postponed due to Covid19. I think it's good to get a baseline scan so I'd ask your oncologist to refer you. K xox

@Caibo yes ask for the bone density tests one now and one at end of treatment. All the best xx

@JanineG thank you and all the best to you too xx

@Jwrenn Yes, that’s what I was finally told too, you need to answer yes to just one and you can get it. I have a health care card too as single parents apparently get same benefits as seniors 🤷🏼‍♀️. It’s been very helpful though. I’m also getting free treatment at a private clinic, and medication is thankfully very cheap. I still paid for scan but only about $15 so I’m ok with that 👌🏻

@FLClover I was answering the same questions and the lady finally told me if I answered yes to just one question it wouldn’t cost me anything. So it was yes I have asthma and my BC nurse told me I have rheumatoid arthritis everywhere so those two things were enough to get it free. I have a health care card so haven’t really been charged for anything, even radiation in a private hospital. 

Oh yes that’s right, you do have to be under 45. I forgot about that. Too much info 🤦🏼‍♀️ 

It’s worth checking the conditions for rebate on the BCNA website ( bone density info). Postmenopausal is OK as long as you became so before 45 I believe. Also, if you are over 70, at the moment you can’t get a free one every year. Cheers

Hi @Caibo, I’m due to start Letrozole in about a month, and had a bone density scan a couple weeks ago. Lady was asking me why I was taking the scan, going through different reasons, and I couldn’t understand why. Then I realised she was trying to find a reason to get me the medical rebate. Being postmenopausal is reason enough, so if you are, or are taking Zoladex like me which will cause you to be, you qualify for a rebate. Scan was $160, I got $145 back (but I’m unemployed single mum).  So it’s prob a good idea. Good luck Xx