Forum Discussion
CassieB
6 years agoMember
Osteoporosis
Hi I'm 58 and 6 years post diagnosis and 4 yeas post treatment for HER2+ BC. Had chemo and radio plus Herceptin.
Had two bone density tests during treatment half way and at end. There were some signs of bone loss but at no point was I told to keep having these tests. Fast forward to a fall and fractured wrist and a bone density test. I've been diagnosed with osteoporosis of my hips and lower back. Probably caused by steroids during treatment and menopause.
Has anybody had experience taking Aclasta or Prolia? Any side effects or pain? I want the truth.
Thanks for reading.
CassieB
Had two bone density tests during treatment half way and at end. There were some signs of bone loss but at no point was I told to keep having these tests. Fast forward to a fall and fractured wrist and a bone density test. I've been diagnosed with osteoporosis of my hips and lower back. Probably caused by steroids during treatment and menopause.
Has anybody had experience taking Aclasta or Prolia? Any side effects or pain? I want the truth.
Thanks for reading.
CassieB
36 Replies
- CaiboMemberThanks @Afraser. Good advice.Will check that out
🙏🤗 - AfraserMemberIt’s always worth knowing what you are dealing with. If, like me, your bone density is good, you can feel a little easier about the impact of Letrozole, in that regard. If not, you can think about what other medications may be able to offset the bone thinning if it occurs. The test may not be free so check the costs (I pay about $125). Best wishes.
- CaiboMemberHi. I have had chemo and a double mastectomy 2 weeks ago because of Her2+ Invasive BC in my left breast.
After reading this thread,I am wondering whether to ask my oncologist to do bone density scan before he starts me on Letrizole. Shall I bring this up with him? I am on Herceptin for another couple of months. Thanks - JanineGMember@CassieB it sounds like you had a good informative appointment with your rheumatologist. It looks like you have a plan! I really hope you have the great results that I am having. I’m keeping my fingers and toes crossed for you 😁
- CassieBMember@JanineG I saw the rheumatologist yesterday. I am starting on Aclasta in six weeks time. I need to have a full dental check up prior and start taking Ostelin because my vit D is a bit low. (43 and should be around 50). Treatment can stop and start apparently so I could have it once a year for 3-5 years and "get some money in the bank" as he put it. Maintain progress and revisit later. Side effects are low 1/10,000 for long-term use. Things such as bone loss in jaw. He also said it could protect me from bone cancer and thought it was probably a good thing I rejected the Femara 6 years ago because that causes worse bone loss. My osteoperosis is mostly genetic made worse by menopause and chemo. For 58 years of age I'm nowhere near normal in the scale in fact my bone loss is closer to a 70 year old. So willing to try this drug if it can slow it down.
- AfraserMemberDear @iserbrown
Thank you! An encouraging word is always welcome. I slightly lament the excellent bone density I had at 67 (that of a 35 year old according to my oncologist) but it’s probably allowed me to get this far with relatively minor damage, so I shall be grateful! - iserbrownMemberWell that sounds like an excellent result @Afraser
Given the BC diagnosis and treatment and the natural ageing process I would say woo hoo to that result "Bone density is still above average for my age"
Excellent
Best wishes
Take Care - AfraserMemberHmmm, my last bone density test shows little change from last year, osteopoenic in patches (left hip particularly, I wonder if it’s coincidental that I invariably carted my daughter about on my left hip!) but no osteoporosis. Bone density is still above average for my age. Good in one sense although a worse result might have motivated me to go off femara. Oh well, here we go for another year!
- JanineGMember@CassieB Not at all! 🤔Though now maybe I will blame my weight gain to Aclasta rather than the excess of chocolate, chips, biscuits, etc I’ve ‘accidentally’ consumed lately🥴😂. Seriously though no problems other than the very first one giving me a day of nasty bone pain. I picked up my Aclasta yesterday ready for my appointment in a couple of weeks. To give you an idea on price I paid $92 at Priceline phy. If you qualify for it to be subsidised the price is $40! Here’s hoping your wrist fracture has a $ilver lining 😁
- CassieBMember@JanineG quick question about Aclasta. Have you noticed any rapid weight gain or swelling in legs or feet?