Hi everyone, I don’t post on here much these days but check in from time to time to read about others. I am in need of some support/advice at the moment though. It’s coming up to 4 years since diagnosis, I seem to have ‘had it all’ as far as treatment was concerned, mast, chemo, rads, herceptin, overy removal, recon, infections, reactions to chemo and femara. I’m 39 (soon to be 40!!!) anyway all has been going ok, apart from the drastic bone density loss showed up on my scan over a year ago. Just recently my joints are giving me he’ll. I’m know this is caused by one of three things, bones getting worse, the femara, or mets - obviously I’m rather hoping it’s not the latter!
Anyway just wanted to hear your thoughts, stories and opinions on this. The femara was fine for the first couple of years, does it all of a sudden come on, or is it like a gradual effect? If it’s my bone density what should I expect - my doc was trying to avoid bisphosonates (spell?) for as long as poss. If bone mets is it likely that ankles, wrists and fingers would all start to ache at the same time?? My back and hips do not ache much really. I also fractured my finger recently, never had a fracture in my life until a few weeks ago, worried that this is the start of frail bones.
Thanks for reading.
Xx
Sorry to hear you are in a lot of pain - it is rotten to have to cope with it. The way you describe your pain does not sound to me like any description of bone mets that I have heard of. It would be quite unusual for the pain to be noticed in the ankles, wrists & fingers as you describe.
It’s all very well for your doc to talk of avoiding bisphos. for as long as possible but if you had a scan a year ago showing drastic bone density loss then what is your doc waiting for!!! I assume that it was a dexa scan. Have you been back to him since and is this your GP or your oncologist you are talking about. I think there are quite a number of members here on bisphos for bone density loss so I hope they will be along soon to reply.
Thank you Dawn for your reply. It is my gp who I am now under for the scan, I think it is the dexa one ( that scans your hips). I have spoken to her yesterday and she has referred me for Another scan. she said a year ago that I should try and stabalise the situation with diet and exercise, and didn’t want to start any bisph due to my age, I think because I can only be on them for a limited amount of time???
I hope some of the other ladies who you refer to can give me some advice.
Hello Ness, I think I can empathise a little-the pain in my hands and feet appear to have trebled (and more) in intensity since I came off tamoxifen recently (following a recurrence in my reconstruction) and started zoladex and letrozole, and my bones were pretty painful during the 2 years or so I was on Tamoxifen post chemo. Indeed, I had a bone scan a year or so after my original diagnosis (I was 37 when I was diagnosed in 2007) because my hip was so painful. I have had a few scares along the way but the scans, so far, have not shown any spread to my bones; and, touch wood, they won’t! I have though recently been told that I am osteopenic and have been prescribed calcichew d3. I didn’t know that bisphosphonates were prescribed for people with low bone density; I’d always assumed it was treatment for spread to bones. It’s a relief to know that there is something else out there if the next dexa scan shows further loss! Are you also taking any calcium/vitamin D supplements? You don’t say. Perhaps this is an option before having to take anything else?
As for whether it has spread, I defer to Dawn-likewise, I’ve not heard of spread indicating itself as pain on the way you describe-but I would still be inclined to mention it at your next appointment with your oncologist. In the meantime, I hope you are able to find some pain relief-right now I am tempted to buy an automatic foot massage to help take away the aches and pains! xx
Hi, thanks for your comments. Yes I take 2 vit d daily, I wasnt very good at taking them prior to my last scan nov 10, but since I saw how quickly my bones went downhill, I have taken them every day!!!