Hi all,
For those who are newly diagnosed with bone mets, here’s the link to BCC’s publication.
breastcancercare.org.uk/search-results/*/changeTemplate/PublicationDisplay/publicationId/7/
Jo, Facilitator
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.
finty xx
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.
xx
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 !!!
julie
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.
Paula x
Hi Paula
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?
Hi ladies.
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.
Nicky
Morning all! Just popping in again to clarify about calcium and Zometa.
Zometa is indeed the strongest bisphosphonate in regular use in the UK. There is (I think) a recommendation to have blood tests before each infusion - to check for high blood calcium (my blood calcium levels have always been normal).
I don’t look on it as a “shame” to change to tablets, Bondronat usually does a good job of keeping bones strong, and because you take the tablet daily, drug levels remain steady - some people on a 3- or 4-weekly cycle of pamidronate or Zometa can have pain just before the next infusion is due (I’ve not had this myself).
Oestrogen-blocking treatments (except tamoxifen) can cause bone thinning, which is why some are prescribed a calcium supplement, or choose to buy an over-the-counter product. I had been diagnosed with osteoporosis before bc so was already “bone aware” and had taken another bisphosphonate, alendronate, which had significantly increased my bone density.
Good that someone mentioned the risk of jaw problems. Remember to tell your dentist that you are on bisphosphonates, and tell your onc.team about any dental problems (normal fillings are OK).
That makes sense mrsblue - thanks for that. Apparently Zometa can stay in the system for a very long time and recent research shows that it carries on working for ages. I have read on some US cancer boards that because of this it is not uncommon there to have Zometa only once or twice a year. So regarding the dentist issue - I imagine it is necessary to inform the dentist even if you have recently finished Zometa - just to be on the safe side.
Nicky that is good news about the ZICE trial - I have just googled it and it ends in October, so hopefully results will be disseminated to oncs fairly soon. If they are the same it would be nice to have a break from IV treatment for a while. Do you happen to know if the jaw issue is specific to Zometa, or applies to all bisphos? Thanks.
The generic drug name (*) for Zometa is zoledronic acid. This same drug with a different brand name, Aclasta, is licensed in the UK for osteoporosis as a once-yearly infusion.
* see netdoctor.co.uk/medicines/brand_generic.htm
And the risks of jaw problems are thought to apply to all bisphosphonates, but the stronger drugs have higher risk.
Finty, I am Pamidronate and was told to get all dental treatment done before starting it, so I guess it isn’t just Zometa.
I made a mistake in my post up there ^ about HER testing, should have said if initial diagnosis was before 2005 then ask for the tissue to be retested for HER status.
I supposing that tissue slide/samples are kept as mine were. I do wonder if the confusion from the different results has come about as I had two tumours, maybe they tested different samples. That is why they decided to test the lymph node tissue as its more accurate - so my BCN said.
I presume most things as I seem to be surrounded by confusion at times from the people looking after me. So far the only explantion for this is that a ‘0’ was missing from my hosptial number!
Hello ladies
Great idea to have this thread. I thought I’d check in too, as I was dx with bone mets in summer 2008. Just had a bone scan which shows all still stable, which is great news. I’m on herceptin and pamidronate. They’ve just reviewed the concentration of pamidronate and as I get quite a lot of pain they’ve decided to increase the strength of it, so if anyone else gets pain it’s worth seeing if the onc team can increase the bisphosphonate.
Alison
Hi, I’m just starting a forum break, I will still check in but I really feel like a little break, I’ve been using these forums since January 2004 and they are such a part of my daily life now it won’t be easy…anyway I couldn’t go without first replying to this very useful thread. 
My mets are lytic, not in the marrow, er+, pr+ and her2-
I was diagnosed with bone mets in 2003, I was in my early 40’s. My hip spontaneously fractured, I had a successful hip replacement and my breast cancer and bone mets diagnosis all at the same time.
I’ve had Tamoxifen, Arimidex and I’m now on my first chemo, Xeloda. (Exemestane didn’t work for me.) Tamoxifen worked for approx 18 months, Arimidex worked for just over 3 years and Xeloda is still working nearly 2 and a half years later.
I’ve been on bisphosphonates since 2003. I had pamidronate infusions at first and changed after a few years as veins were bothersome. I’m now on Ibandronate tablets. I also take Adcal D3 calcium tablets, one a day.
I’ve had some radiotherapy, one dose to my sacrum and a couple of doses to my operated hip side to kill off any stray bc cells after my hip was replaced. I should (hopefully) be having my ovaries zapped soon as after many years of injections to halt my periods whilst on hormonals my periods returned when the injections were stopped as I started chemo.
As I was diagnosed with mets from the beginning I’ve not had a mastectomy. I think that’s everything…
I feel well and have not had any pain. I’ve had no detectable active cancer for most of the last seven years.
xx
Hi Belinda
Enjoy your break away from us. I know you will be back soon and will look forward to your posts
Blondie
Belinda - enjoy your break - I think we all need time away from time to time. But that phrase “no detectable active cancer” is soooooo good to hear and so encouraging for people like me with a recent diagnosis.
finty x
Hi Girls,
I am having a lot of problems wearing my prosthesis,since I have had my bone mets diagnosed, I have tried various bras,but I haven’t found a comfortable one, I have them as loose as I can, but they still hurt me around my ribs,where I have the BC.I try and avoid wearing a bra as much as I can, but there are certain times you just can’t get away with it!!
Has anyone got any suggestions? Thanks,
Take care, Maryxx
Mary - could you get a pocket sewn into one of those camisole tops that have some secret support ??? I have found sports-type bras from Primark at £4 are good as they don’t have any underwiring and I can have 3 a year fitted with pockets at the local hospital. They don’t put pressure on my ribs - I have a couple of small ones there and another area on my spine where the bra fastens.
Liz
Liz that is a good idea about the camisole, I never thought of that,and there wouldn’t be anything going around the ribs, unfortunately,I have extensive mets in both sides of my ribs. I found a really good bra in Asda £6 and it has pockets both sides, check it out! It was quite comfortable when I first tried it on, but as the day goes on, I can feel my ribs getting really sore!! I will check the Primark ones out!! Thanks,
Maryxx
i went to see a surgeon on Tuesday it was my first consultation with him, it was to discuss removing part of my sternum that has the cancer in it.
It was a good appointment he was a really nice guy, he explained lots of things and showed me the pictures of my PET scan
{it was weird seeing slices of my own body!,also someone told me that a PET scan lights everything up like a christmas tree and they were right!}
my oncologist is wonderful but he works alot with pen and paper! usually gets the nurses to get the scans on the PC
The surgeon told me that he would think about stopping the chemo i have just started and doing the op however my oncologist has said I’m to have 4 chemos then a repeat PET scan, dependant on the results, I’d either have more chemo or the op to remove the sternum.
He was positive and explained that if the PET showed no other cancer apart from the sternum, he could remove it although he would have to take more than just the cancer area,to make sure he got clear margins
i admit the thought of yet another operation does not fill me with happiness but if it gives me more time I’ll grab it with both hands!
I’m feeling down today, its sinking it about my secondaries and feeling more real i think its alot to do with my hair falling out in hand fulls today