Having only been diagnosed with bc and bone mets together just before Xmas, I’ve just been in for my second Pamidronate infusion.
Mentioned that the effects of the last one seemed to have worn off and that I was in a lot of pain in my left hip/lower spine, thinking they’d just say that was what normally happened. The onc had another look at my scans from last month and immediately sent me off for an X-ray of my left hip with a “New mets??” query on the X ray card. I’m really panicking now that this is spreading already - although the bc nurse told me it could be referred pain from the mets in my lower spine. Am I being paranoid here?
My bc and bone mets were dx together 2 years ago. We all on here understand your worries, its natural to worry about every ache or pain we feel. My bcn has always told me to tell them if anything new happens and not to feel paranoid. Can I ask which bones are effected? When do you get your results? I know I normally get mine within a day or 2.
I’m taking oral bondrant, haven’t had pamidronate, but I know on previous threads ladies say they have pain just before next infusion is due. Sorry not much help. Keeping my fingers xd for you.
Thanks Lynni - I was dx’ed with mets in my lower spine, ribs and upper vertebra - the pain I’ve been getting in the last week is in my left hip which I thought was just generalised pain coming from my lower spine but they seemed to be worrying it might be a further spread. I had the X-ray today and the onc said she would be in touch if that showed I needed a further scan. I’m due to see the onc for a ‘regular’ appointment next Monday anyway but may try ringing the bc nurse on Friday to see if I can find anything out.
No, no chemo yet, just Tamoxifen at the moment - the onc will no doubt be telling me on Monday what treatment they recommend I have but from what I’ve read on here it seems most bone mets are just treated with hormone therapies/bisphosphonates and rads - unless anyone has had a different experience…
I haven’t had chemo yet tamoxifin for 1 year then femara for a year and still going. My bone mets are in right hip, several ribs and 3 spots on spine. Also mets in peretinium wall and ovaries. Found when ovaries removed last year as BRCA2 carrier. All mets stable, but have had a couple of scares this year. I had originally been told with the bone mets if I have pain they will blast area with rads, it could also mean tablets not as effective and would then change to another one. Coz mets now elsewhere I would maybe need course of chemo now, but then back onto hormone therapy. Sounds easy doesn’t it lol!!!
I’ll keep my fingers crossed for you and really hope you get good news.
Lesley I was dx with bone mets in skull, all areas of spine, ribs, collarbone, and left pelvis/hip back in 2002. There was a bit of a time lag before starting on pamidronate as I was about to go on holidays (ok’d with onc) then there was Christmas/New Year. I then went on 4 weekly pamidronate in January and after the third one had another scan. The mets had increased in my spine and spread to my right pelvis & hip. The oncs cant be sure at what point it spread further but think it was from the time of dx to starting on pamidronate, so I was changed to 3-weekly. All scans after that 2nd one have shown stability and improvement - so don’t give up hope. I think your onc is just being extra careful having that x-ray done because if it has spread to your hip they do need to check because hips can be a bit fragile :(.
Thank you Lynni and Dawn - I’m so new to all of this and panicking about everything at the moment - but if it has spread to the hip then no doubt it will either start responding to the pamidronate from now on or they’ll recommend me for rads or something …
I can tell hips are fragile - mine feels as though it’s about to break every time I turn over in bed, it’s a nightmare, although a week ago it was absolutely fine!
The onc agreed straightaway to my request for three-weekly pamidronate so that’s good news.
Hi Lesley…glad you can have 3 weekly infusions. I had a scare last Spring when I suddenly had severe left hip and knee pain…it appeared out of nowhere…I went straight to the hospital and had an urgent scan so they could rule out sudden spinal cord compression. It was all okay the problem was actually due to my (known) sacrum mets…I had one blast of rads and it fixed the problem completely. But the pain hadn’t been in the sacrum at all, just hip and knee so you might well have referred pain. It took a few infusions before I stopped feeling so fragile…I used to feel my spine ‘move’ if I laid on my back when I was first diagnosed …it was a very scary feeling! Your first infusions will be jolting the bone mets about (in a good way) I was warned my pain would get worse at first before getting better. I hope you have a good appointment Monday. Belinda…x
Thanks Belinda - my initial reaction was that I had referred pain so I hope that’s what it is. It may be that a blast of rads will fix the problem but I’m hoping the infusion will kick in like it did last month and the pain will ease up in a few days. I didn’t realise the first infusions will be jolting the mets around - but if that helps then I’ll put up with it, lol!
Will let you all know how I get on Monday, thank you for all your support, it really helps in a huge way
Hi Lesley…I was always think of mets being jolted around…but that’s probably not the most accurate description! The infusions are being ‘taken up’ by the areas affected and (I think) because they are beginning to stop, slow the bone being broken down this is why you can feel more pain at first. I have lytic mets…the holey kind…the onc has told me some of my mets areas have healed and the bones are ok now…I guess most of us might not know if we have blastic or lytic mets but when I had my hip replaced they said I had a big hole in my old hip! Yikes. So glad they didn’t show it to me! Belinda…x
Yes, that makes sense that the pain may be worse before it gets better. I’m not sure what sort of mets I have, I shall ask on Monday though - they’ve only talked about ‘lesions’ at the moment which means nothing to me - I really should start getting more informed I suppose.
Hi Lynni…there’s a really good site if you want more info, AdvancedBC (dot) org…I copied this below from their website…Belinda…x PS Lytic lesions are more common than blastic.
Bones – breast cancer can spread to many parts of the skeleton, but the ribs, spine, pelvis and long bones of the arms and legs are the most common metastatic sites. Persistent pain, achiness, or tenderness on pressure are usually the first symptom of bone metastases. Bone metastases are of two kinds, or may have mixed features. Osteolytic bone metastases, where the bone is eaten away, have a characteristic “Swiss cheese” appearance on scans, and may cause weakening and even fracture of weight-bearing bones, although this is less common now that IV bisphosphonates are routinely given. Osteoblastic bone metastases can cause growth of unhealthy bone that leads to pain.
Thanks Belinda, that’s really interesting - I’m going to ask which type I have when I see the onc again next Monday. I would imagine as I’ve been told that my vertebrae were in danger of collapsing that I probably have the former, but will check with him anyway.
It is interesting isn’t it Lesley :). When I asked for copies of all my notes I found it made fascinating reading (strange I know) but found mine were a mix of both osteolytic and osteoblasts then for good measure they chucked in a bit of osteoarthritis as well. I also found it very interesting being allowed to look at the scans. After a couple of years all the black circles on my skull had gone. I think I read somewhere that once the damage is done to the bones the bishbosh can’t replace the holes in the damaged bones but that it strengthens what is left. When I had a brain mri scan a while ago it puzzled the consultants looking at it because the onc had told them when asked that the mets had not affected my skull. They never seem to read all the way thru my notes - I wonder why - so because she had looked at recent scans she made the wrong assumption. When I told her that the mets in my skull had been bad there seemed to be sighs of relief all round!!! The damaged still showed up on the mri scan.
Hope you are noticing improvement to those aches & pains now.
I don’t think I’m brave enough yet to want to read all my notes or look at my scans - that may come later! It must be great when things start disappearing on scans though - I don’t mind looking at it if it’s good news but I think it’s a bit early for that for me yet, lol!
Thanks Dawn, think I’m feeling a bit better today, the pain is still there in my hip but is more of a dull ache today rather than the sharp knife-like pain that I’d had for a few days prior to the infusion so hopefully it’ll all start to kick in properly in a day or so.