Bone mets - please join in

[dawnhc]

Hi Linda,

Sounds like you really have had a lot to cope with in the past 3 years. How soon after your bone mets dx did you get the skin & lung mets? I think there are quite a few of us with just bone mets for for a few years but the fear lurks for me that it won't stay that way. Actually I keep forgetting that for me it has already moved on but it doesn't have a 'label'. It is the tumour (not bone related) that is growing alongside my spine. I thought for ages as did my onc. that my pain was due to the bone mets. I am just hoping and praying that the recent rads I had for it will keep it at bay for longer but it doesn't stop you wondering where else it might be.

Are there others with more than 'just' bone mets?

Dawn
xx

[Guest user]

Hi

I'm a bone mets person too (although I now have lung + skin mets to add to my collection). I was diagnosed in Jan 2007, since then I have worn out all hormonal treatments, had taxotere, two mastectomys, radiotherappy, hip op and spine op to relieve spinal cord compression. I started on Capcetibine/Lapatinib 2 1/2 months ago. I will be having a a scan shortly too see whether this is doing any good, but I fear the worse as the pain in my spine is getting worse and there is no improvement in my skin mets. Sorry I am not a very good ad for bone mets, more like your worse case scenario but I am still fighting the b*@"d.

Regards

Linda

[dawnhc]

Hi Muddy,

I was really surprised to read that you are on capcitabine and herceptin.

I have extensive bone mets since 2002 in skull, ribs, collarbone, all of spine, hips and pelvis - bit of wreck really LOL. but it is all stable. I am only on zometa and herceptin. I wonder if it is worth asking your onc why you are on both chemo & herceptin. Hope the results of the forthcoming scan are all good.

Dawn
xx

[Guest user]

Hi
Just to say I too have bone mets. Brief summary - initial diagnosis June 07 . Bone mets in Jan 09. Feeling ok. On Capcetabine permanently(until it stops working) also on 3 weekly Herceptin. Feel tired and need regular naps. Not pleasing at 40 . Married with two angels of boys aged 14 and 11 and a saint of a husband who puts up with my regular tears for a life thats gone and a new one with a very uncertain future.

Have another big scan coming up- I hate the fear and dread they bring. The drinking the rotten stuff, the hunt for a vein and then the wait - oh my, the wait for results!

So far one bone met on spine 2cm which at last scan was stable. Please God may he have mercy for the next scan.

MuddyXX

[Guest user]

I too have trouble wearing my boob and most of the time don't bother anymore. It's so heavy and presses on my chest wall. It is noticeable as I have one remaining large boob, get looked at sometimes but I have decided I am not that bothered. I do try to wear it but most of the time I find a quiet spot and pull it out and go without. I've have mislaid it several times. 😄

I have had a set back, just out of hospital. Had neutropenic sepis from my first cycle of Capecitabine - which surprised me as I thought that it was a kinder chemo. Then I was told that I was very close to heart failure as my first Pamidronate infusion knocked out my electrolytes, calcium and potassium. My BCN nurse said she had never heard of that happening before.

I have had 7 days of IV antibiotics and potassium, calcium infusions. The couldn't find the infection that was causing me problems. I am home now, weak as a kitten but hopefully will get stronger soon. Still talking calcuim twice daily.

My chemo has been put off for two weeks as my white count is still low and we are going to discuss maybe a lower dose or different schedule.

I was fine when I was taking the chemo too, had all the side effects but in a mild way.

I am hoping this was a one off reaction, from the sounds of things its not common.

Best wishes

Paula x

[Guest user]

Hi all

Like Nicola, just had a chance to catch up on thread, haven't read back through posts yet but will do asap. Great threat Flinty good to have somewhere to share experienes, treatments, pool information etc.

First diagnosed in August 08 and with bone mets in September last year - after complaining about pain for 11 weeks and seeing various doctors, onc, breast care consultant etc - my GP advised me to go for a massage!! By the time they scanned it it had done considerable damage to top of spine and I have now to take far too many meds for my liking to keep the pain at bay. Second met diagnosed April after 6 cycles of Carboplatin. Recently asked for a second referral to the Marsden (due to inconsistency of care and onc's that said different things) and they have recommended a chemo which I intent to ask for and hope to start soon. I am also being considered for a trial (triple neg) but only 10% change of meeting the critea so letting myself get excited. I also have skin mets and regional lumps & bumps. Apart from some pain feel relatively good and still work full time. Just bought a caravan and plan to get away very soon.

All the very best to us bone mets girls and thanks for the thread.
Love Anne x x

[Guest user]

This is a really good thread, I have been away for the weekend and most of last week, so seem to have missed it earlier. I will certainly start to look out for it. It is also quite useful having information about each other summarised. I communicate with quite a few people on here and can't always remember where different bone mets are that people have and what treatments they are having.

For those of you that don't know me. I was diagnosed with bone mets end of April 2010. (primary diagnosis Dec.2006) large area across my hip and hot spots in my neck, shoulder, ribs and lower spine. I also have a soft tissue tumour in my chest. I am currently taking Femara and am due to start Zometa (once every 4 weeks) next week (I have been taking alendronic acid a lower dosage bisphosphonate, a weekly tablet, since last Summer to treat osteopenia.) I also take daily AdCal tablets. I am also due to have a hip replacement, to remove the affected area at the top of my femur/pelvis. I am just hoping that the hip holds out and doesn't fracture, as I want to have a holiday this summer.

Take care all and keep on posting
Nicola xx

[finty]

Thanks Nicky - I hadn't paid that much attention to this issue, and now realise I should have been much more on the boil. I wasn't given much information about it - just an almost throwaway line from my onc - like so many things with bc it seems it is up to us to do the reading. Fortunately I've had very little problems with my teeth, but will be more attentive now. Going to the dentist next week for the first time since treatment started - hope there will be no nasty surprises - and hope all goes well for you too.
finty xx

[nicky08]

Hi
I've been away from the boards for a few days so just wanted to answer finty's question (although other already have said) about the jaw problems and bisphos. If you look at the amount of active 'ingredient' in the IV bisphos it is huge compared to the amount in the tablet form and it is thought that there is more risk to those having the IV type. However, I had to have a tooth out last year and have been on bisphos for over 2 years - not what I wanted but couldn't be avoided. The surgeon I saw (I was referred to my hospital) is the key dentist there who has to study statistics for the jaw necrosis said that it is a 'ticking timebomb' as so many people are on bisphos these days, and not just for cancer. He says that it is completely random as to whether this will develop after a tooth extraction and they cannot predict who will have problems although it is thought more likely to be from patients having IV bisphos. Also it has nothing to do with infections after the extraction so taking anti biotics after any dental surgery will not help as it is the bone not the gum that is affected. I must admit I am having to go back to him in afew weeks as I am experiencing a few problems but keeping my fingers crossed (to say the least) that it is not this complication but something more minor. I've been told the necrosis starts almost immediately and is painful but I guess there may be differing degrees of it - but I don't know.
Just a quick hi to Belinda as well - I fully understand about not being on the boards as much or not at all - I am similar but nowhere near as long as you've been on here 😉
Nicky x

[Guest user]

Hi Mary,
My mum uses those type of bras and she steps into them as she has trouble putting it over her head, she loves them.
Reneexx

[Guest user]

Hello Fruitgum,

Thanks for the info, I am going to check the 'pull over bra' that sounds like a good idea,I am assuming that as you can pull it over your head, they must be elasticated,ideal!!

I have tried allsorts from quite expensive to really cheap,and just can't get a comfortable one. Many thanks for your help.

Coomercrab, I am on Tamoxifen and Zometa every three weeks,since May,I am doing well, my tumour markers have come right down,and my pains have settled. I go tomorrow, so hoping my bloods are still going down! I do hope you have good results with your treatment as well. It is very frightening,and we all have wobbly monents, I don't know what my prognosis is, and really don't want to know. We just have to get through as best we can, and there is great support on the forums, I don't know how I would cope without it!

Take care ladies, Maryxxx

[Guest user]

hello
am new to this chat thing- but read your comments about bra's etc.

I still have soreness/tenderness after my surgery a while ago and sometimes find that a "bra" that I pull over my head- a bit like the sports variety with no catches, gives good support, looks good and is comfy.

Avon do a good one in black up to a large size. their policy is to refund fully if you're not satisfied - so there's nothing to lose.

Primark's bra tops are very flimsy and you might find their vests with added support around the midriff better than their bra's. they're about a £5 and hold everything well.

lots of luck with it

[Guest user]

Hi everyone. I was dx with bone mets and primary bc in May this year. I am only on hormone tabs and zometa iv once a month. I have a blood test before each iv to check calcium levels. My onc says that an mx is not an option because he is worried about damaging my chest wall, and if the hormone tabs shrink my lump then that will be ok. I really didn't have a lot of time with him last visit, so will be grilling him a bit more on my next appt. I am crossing my fingers that I can avoid chemo. I have drawn lots of comfort from ladies on this site, and I am v pleased that someone has started a thread for us boney ones. My mets are in hips and ribs. I was ridged with fear when first diagnosed and still have wobbly moments. I am still unsure what my prognosis is,but there are no real answers to this disease are there.Take care everyone, x

[Homer]

justy

thank you for your reply xxx

i have not heard from anyone else who has had the cancer return in the sternum,
its good to hear the op worked too even though as you say it was not a small op to have.

Can i ask how long you were in hospital for and your recovery time after the op?

sorry you have it back again xxxx

[Guest user]

Hi Homer
Just wanted to say that I had the whole of my sternum removed and a prosthetic one put in at the Royal Brompton in London four years ago. It was a very big op but very successful as I have had no recurrence (of that cancer!) since. I have developed a new breast cancer in my other breast now but that is a different story. So I just wanted to say that the surgery can be extremely successful and I was NED for four years and still no signs of trouble in that area,
Hope you're feeling a bit better
Justy

[Homer]

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

[Guest user]

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

[lizcat]

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

[Guest user]

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

[finty]

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

[blondie]

Hi Belinda
Enjoy your break away from us. I know you will be back soon and will look forward to your posts
Blondie

[belinda]

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

[Guest user]

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

[Guest user]

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!

[mrsblue]

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 http://www.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]

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.

[finty]

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.

[mrsblue]

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).

[nicky08]

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

[finty]

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?

[Guest user]

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

[juliet66]

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

[Guest user]

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

[finty]

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

[Jo_BCC]

Hi all,

For those who are newly diagnosed with bone mets, here's the link to BCC's publication.

http://www.breastcancercare.org.uk/search-results/*/changeTemplate/PublicationDisplay/publicationId/...

Jo, Facilitator

[SueCheshire]

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.

Sue

[dawnhc]

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.

Dawn
xx

[Guest user]

Hi claire,

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
xx

[Guest user]

Hello Everyone,

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,

Love Maryxxxx

[Guest user]

Hi
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.

Claire

[finty]

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?

[Guest user]

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.

[finty]

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?

[finty]

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.

[finty]

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?

finty xx

[dawnhc]

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.

Dawn

[mrsblue]

Hi all
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.

[juliet66]

Yes Marychris,

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).

Julie x

[Guest user]

Hi Girls,

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?

Take care,

Maryx

[lizcat]

Hi finty,

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.

Liz