It is nice to have a bone mets thread for comparisons and support. We all seem to have different treatments to some extent and this seems to be down to the individual oncologist as much as the patient!
I discovered I had bone mets 2 years ago when I went for a scan following a local recurrence. I was so shocked as I had no idea, hadn't been in any pain and was 'only' expecting to have a mastectomy - not to be told I had mets. The initial suggested treatment was going to be hormonals and bisphosphonates but my onc did leave it up to my OH and I to eventually make the decision - she certainly wasn't in a rush about it which was nice not to feel I was going to drop down dead any moment. After discussing it again with her we opted for chemo 1st then continue on hormones and bisphos - partly due to the local recurrence. The view is that hormonals will do the same job but tend to work slower so the results would take longer to show. I responded well to chemo and have continued to do well on hormonals (Arimidex) and bisphos. So much so my (new) onc sent me away the other month and said he wasn't going to do any scans - good new but quite worrying that I didn't have my little 'picture' taken! I have switched from Pamidronate to tablet (Ibondronate) due to poor veins. Initially my onc said the same thing about not being as effective but this tends to be from them not being taken in EXACTLY the right way and I understand that the oncs at The Marsden, where the ZICE trial has been monitored say they produce the same results as Zometa (the IV bisphos that they are trialled against).
Since my dx, and also finishing chemo, I have got on pretty much as I used to. I get the odd twinges but these go away (luckily) and I make sure I enjoy my life as we are all aware that this can change. Howver I do get great comfort from the postings of dawnhc and Belinda who have lived with bone mets for many years.
I can't help with the Pamidronate I'm afraid. It is very strange about your conflicting hormone results - are they suggesting that your status keeps changing, or that the testing isn't accurate for whatever reason? Also, I hadn't really thought about it before, but does this means all our tissue samples are retained?
Lots of good information on this thread, it was a good idea Finty.
I meant to add to my post about path reports, if your original diagnosis was after 2005/2006 it is worth asking for your tissue samples to be tested to see if you are HER positive. Tissue wasn't routinely tested until after those dates. I did and I am HER+++.
There has been some confusion as I originally was (2004) ER positive 6/8 when it was retested recently it came back as ER neg 0/0. I had been on Tamxofin, Arimdex and Extremsene. Taken off hormone treatment a few months ago. I queried this and asked for a retest which has come back as HER+++ and ER positive 8/8 - they tested the highest node which was effected. I need to talk to my oncologist about this as I am not on any hormone treatment at the moment.
I do have a question, I had my first Pamidronate infusion last Friday and have felt very down and weepy since, has anyone else had this reaction? Can't be bothered to do anything. Could just be the situation I suppose but it seems to have been since I had that infusion.
I am not on calcium either ..........I mentioned it to my onc and she said you have to be careful not to have too much when on zometa (risk to kidneys).
So strange that we all get told different things.
Before my secondary diagnosis I was just on hormonals and was prescribed Adcal then !!!
Hi finty & Dawn,
Thanks for info re portacath.
I'm currently having a PICC line, but that's coming out in Aug/Sept. Also, have one more chemo to go - yippee!!! And hoping to stay off it for some time - if I have to go back on chemo, portacath is certainly the way forward. My note says that they won't fit a PICC line in again due to tinny veins!
Heard a lot about the jaw prob when on IV Zometa long term, but also heard a lot about tablets not as effective. Have lymphoedema in right arm, so restricted to only left arm for IV, so poor veins on left certainly didn't have much chance to recover. Will need to speak to onc re tablets and weigh up the benefits & risks.
m1yu - I agree with Dawn, if you are struggling with veins it would be worth asking for a portacath, particularly as you are on chemo anyway for your liver mets. Zometa is described as the gold standard of bisphosphates - would be a shame to move to the tablets if you can avoid it.
For those who are newly diagnosed with bone mets, here's the link to BCC's publication.
Great idea to have a Bone mets thread.
I was diagnosed with bone mets in April 08. Had chemo (tax) so that I could have Herceptin again. Now on Herceptin every 3 weeks, Zometa every 6 weeks. They also give me AdCal tablets - Calcium and Vit D. I also supplement with extra VitD and Magnesium.
Recent bone scan showed overall appearance very similar to last year.
The MRI showed that the pain I've been getting down my left leg is sciatia not cancer. Going for physio tomorrow morning.
m1yu I was on the tablet form of bisphosphonates but didn't get on with them. Have you thought of having a portacath?
Re the calcium supplements I was prescribed these early on with the bone mets but my calcium levels were going too high. I never went back on them.
Claire I also have bone mets in my neck (cervical spine) they have damaged the odontoid peg which is the one the head turns from side to side on but don't recall having problems with my arm because of it. At least they are checking yours out carefully.
Do any of you have chemo for bone mets who are not on either tamox or AI or herceptin? I think if you are on one of those and your mets are stable you don't need the chemo. My fear is that although mine are stable and I have been on herceptin for 6 years now it is possible that it is not working so well for me now and I am dreading being put back on any chemo - I have had so many of them over the years.
I've got bone mets in neck. Also have 1 in breast bone, 1 in hip, 2 in spine and a newly discovered one that I didn't bother to ask where it was. The newly discovered one apparently was there for some time and only showed up last time because it was "healing".
I'm "fortunate" in that I've not experienced any pain for my mets. I've been on Zometa for about a year now and it's doing a good job. I don't know anything about the calcium supplement either. I believe that's related to the hormonal treatment rather than Zometa - Do correct me if I'm wrong. I might be switching to tablets form soon due to poor veins. Any info on that would be great.
I also have liver mets and the chemo I'm on now is mainly for that.
Thanks finty for starting the thread
Thank you all for responding to my question,I have learnt so much already!
Julie , I do hope you get good news from you scans, a nerve wracking time!!
I will keep everything crossed for you..
Mrsblue Good to know things are going well for you, long may it continue, it is a relief to know that the hormone and Zometa,can keep things at bay.
Dawn sorry that you are having pain,do hope they can get your combo right,you have been such a help with all your knowledge,thank you for offering to answer any questions,
Finty thanks for starting this tread, as I said I have learnt so much already,and I think there is a lot more to go!! Re the calcium, I was prescribed it the first day I had Zometa, I am surprised you haven't been given it, ask next time you go!
Thanks again everyone, you have all been most helpful,
I too think this thread is a very good idea. Has anyone experienced bone mets in their neck? I have extensive bone mets in my spine and ribs, and at the moment I have had a great deal of pain in my arm for the last 2 months or so, and have been treated for tendonitis, but the physiotherapist thinks I have a trapped nerve in my neck which could be causing it, or making it worse. My Onc has already done an xray of my shoulder, which showed up nothing, and now he is booking me in for an MRI and a CT, to look at my neck. I just wondered if anyone has mets in their neck, and if so, did it cause problems with trapped nerves, pain in the shoulder or arm area? Of course I am hoping it is just tendonitis and nothing to do with the cancer, but you never know.
Elaine - I just heard about the two different types - one of the reasons I started this thread, as there seem to be so many things I don't know! Have you been told whether they respond differently to treatment?
There are 2 different types of bone mets (lytic+sclerotic-apologies if you already know this). It could be you have both types (I do), which would explain this apparent discrepancy.
Thanks Liz - I don't understand why the mets can be healing in one area and progressing in another at the same time. I might have a new one in my arm (scans were inconclusive) - but the spinal one has showed some regression. It's very odd - did your onc have an explanation?
Mary, another poster here - cromercrab - was dx very recently and is also only on hormonals and bisphosphates, although I can't remember which ones. I was surprised too - had thought chemo was a given. I am finding it quite hard to adjust to the relaxed attitude my oncs (the regular one and the radiotherapist)seem to have to bone mets - it seems to be a quite casual wait and see approach.
Mrs blue - I'm on Zometa and haven't been told anything about calcium tablets. Is this just for women at risk of osteoporosis or should everyone have them?
I think it is a good idea to start this thread - much like the liver girls started theirs. It will give anyone looking for info a better chance of finding this. Thankyou for the nice comments above :). Certainly Scottishlass(Val), Belinda and myself have a lot of experience with bone mets over a number of years. Marilf comes a close 2nd with 5 years I think, and hers like mine spread to many areas. Mine started off in my skull, collarbone, ribs, pelvis, hips & all areas of spine back in 2002 (original primary dx was in 1990). I have had rads to my cervical spine, both hips, and twice (2 yrs apart) to my lower spine. Sometimes this was successful, and sometimes not. I was originally on Pamidronate and during 2003 on Capecitabine briefly but discontinued, and then navelbine mainly because I had a lot of lymph nodes in chest and neck areas. When they returned after navelbine the onc discovered that the tissue from my last mastectomy in 2000 was her2+. So from 2004 I was on pamidronate & herceptin. I was switched to zometa earlier this year.
I remained relatively pain free for about 5 years but 2 years ago things started getting bad painwise in my lower spine/hip area so had rads which didn't work. Also had a couple of epidural spinal blocks, again these didn't really help. A number of scans during these 2 years showed no change despite the increasing pain so I requested another MRI recently as it was a good year since the last one. This time it did show a change but strangely not in my bones. I now have a tumour growing alongside the lower spine and affecting the nerves in that area so I had further rads to the lower spine which sadly has not helped. Am on a lot of pain meds and still experimenting to find a combo that will work. Currently on 80mgs day & night of oxycontin, working up to 50mgs amitripyline and fentanyl actiq lozenges.
Sorry this is a bit long but thought it would be useful to set it all out in this one place. If anyone wants to ask questions I am happy to answer them.
Marychris: I was diagnosed with bc 4 years ago, bone mets found 3 weeks later. Treatment for the first 3 years was hormonal (Femara) and pamidronate, which was changed first to Zometa and then Bondronat tablets, which I'm still taking. Bone mets in several places, the hip met is the only one that has been troublesome.
Unfortunately a year ago I was dx with liver mets so needed my first chemo (EC). I've been reluctant to post on bone mets threads since then, but the chemo did a good job and I'm now feeling well, currently on another hormonal, exemestane.
Am negative for herceptin so haven't had that treatment.
Anyone on Zometa, make sure you take a calcium supplement.
I have a met in my lung and one on T12 in the spine!
I had rads to the spine and have been on herceptin, femara,zometa and zoladex for 27 months. I am due for more scans but have been stable for this time (not sure about the moment though having a wobble) 😞
I was told stable was good and chemo would be kept in reserve until there was any change.
I was also told that my treatment would have been the same if I had had multiple bone mets (although not lung).
I was dx with bone mets in April, My pain was ignored for about three months,until I insisted on having a scan, by that time I had extensive mets, in my ribs, spine, skull, and leg! I was in a lot of pain, and started Zometa in May, and hormone was changed to Tamoxifen. My pains have settled, and my tumour markers have gone down. What I don't understand is why my onc didn't suggest chemo for me! I saw him on Wednesday, and asked about another scan to see if anything had changed, but he said no, as all the signs were good, and I felt well. To be honest after a series of things going wrong, I have lost confidence. Is there anyone else who was just treated with hormone and Zometa?
My mets were originally to spine, ribs and sternum but I had chemo first and the next scan showed the sternum one and part of the spine ones had gone so that was good. In June last year I had a small new area towards my upper ribs on left hand side but part of my spine had improved a bit too so it wasn't all bad. I have since had scans last Dec and this June and they have all looked the same as the one from June 09.
At the mo, I'm on zoladex with arimidex as I'm 100% er and pr+, and then zometa every 4 weeks and a daily calcium tablet. Fingers crossed they all keep working as long as poss. I have been told that at some point in the future when they worsen, I'll need chemo/rads or whatever but I'll cross that bridge at that time.
i was dx with bone met on 6th July,my breast cancer was back in 2005
it would have been the 5 year NED for me in October this year,
unfortunately i never reached it.
my cancer has returned in my sternum, and after numerous scans
inc a PET scan they have told me that I'm unusual as it is only
in one area of my sternum, close to heart I've been told.
i started on chemo a week ago,I'm on Taxotere & herceptin
the Tax is till end Sept & the herceptin is indefinitely.
Any info on bone mets would be great for me, as I'm not fully up to speed on it all yet, and anything that i should be asking my oncologist i will!
when i was 1st dx i just wanted them to treat me and i did not really want to know any details however now i like to know everything!!
Hi Daffy - I remember reading your story and was so shocked at how you had been treated. I'm glad you are now getting what you need, but it must be very difficult for you to put the mistakes behind you. So glad the pain has reduced for you and hope the bone strengthener can undo some of the damage.
Hi Liz - I agree, Belinda and Dawn have been a great source of inspiration, and Scottishlass too. It's great that your mets are stable - have you been like that since dx? What meds are you on? As my single met is quite small I am hoping I will be as lucky as you, but there doesn't seem to be any way of predicting how it will progress.
Hi Finty, I have bone mets. Diagnosed in June 2009 with a spinal met to L1.Due to a clerical error where new mets were not added to my file, from a scan in Nov 2009 - so was considered stable and no treatment apart from hormone given. Which obviously was an error. I now have widespread spinal mets and a few rib, difficult to differentiate as I have developed osteoporosis. I am sure errors are not common but I would say to anyone, ask for copies of reports to be copied to yourself, keep an diary of appointments and outcomes from those appointments.
I have just started Capecitabine, had one cycle. Herceptin and Pamidronate. Had a port fitted last Friday. I was in a fair amount of pain but a month ago had a second radiotherapy session to a large area of my spine and only have discomfort from L1 now. I was considered for surgery as the body of L1 has crumbled but bone shards are too near the spinal cord and its considered too risky.
I have found this forum so helpful. It was reading other ladies experiences with bone mets and treatments that started me questioning my treatment and hence the error being spotted.
Wish you well
Great idea ! I was diagnosed with bone mets at diagnosis 3 yrs ago and have benefited greatly from the words of wisdom from ladies on here. Not to mention their stories of hope etc - thinking esp. of Belinda and Dawn here. Would love to be your onc getting loads of questions from you next visit !!!
Fortunately my mets seem to be remaining stable and there's only in a bit of the spine and ribs at the mo. I feel great and am making the most of retirement from work - Amsterdam calls next week for a few days....I do try and go on live chat on Tues evenings when I'm around and remember and there are a few on there with bone mets.
I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!
I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....