64843members
341680posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

Hi all,

I was diagnosed with spinal mets (T5 area)in 06. They initially thought it was stable but shortly after had spinal chord compression which resulted in an emergency vertebrectomy. Unfortunately this resulted in nerve damage in my right leg which now means I cannot walk far or fast. At the same time I had 6 x FEC and 6 x Docetaxol. Now on maintenance herceptin and pamidronate iv 3 weekly. I experience a lot of pain in neck, hips and back I take 70 mg of oxycontin each day as well as paracetamol and gaberpentin etc. Some of the pain is due to arthritis (neck and hips,) in any event sometimes it's hard to keep upbeat when it's bad. However I was delighted when I was told that the majority of pain sites were arthritis - oh how interesting it is when you realise that it's all relative and once the diagnosis of arthritis would have been deeply depressing.

Thanks for this thread it proves to be very interesting - a very good idea.

Highlighted
Member

Re: Bone mets - please join in

Hi Girls,

Dawn I was dx 5 years ago,and have had the same onc, and his attitude has always been the same, I dread seeing him, not just for the news I might get,but I feel intimidated, I am not a very confrontational person, so have let things carry on. I live in Suffolk, and I had a Mac nurse visit once, just before she was due to leave for another job, and have not heard from anyone since !!! I have never had anyone ring to ask how I am, not even my BN!!!

I know that I could get a referral to the Marsden,as I know someone who has done it recently, but my question is, if I am under the Marsden, would I have to go every three weeks for my Zometa, or could I still get that done locally? It is rather a long way to travel!! I may look into changing onc locally!

Paula, what a dilemma for you,and the added worry about your sister, do hope all goes well for her.
Well at least your ex is willing to step in, perhaps, you could just see how social services could help out in any way, I do understand your reluctance though!!

Hope you both managed to get some sleep!

Take care, love Maryx

Highlighted
Member

Re: Bone mets - please join in

Aww Dawn, it must be difficult juggling pain medications. Hope you settle soon. I do have a district nurse and a MacMillan nurse, they are helpful but usually it is just in for a chat every month or so. I am about to email my children's dad as he told me he was willing to come back when needed. How that is going to work out after nearly ten years apart I have no idea. My sister sister was my first choice but sadly is undergoing tests herself now. My Onc has told me to see the social workers at the Hospice where I see the Palliative care consultant but I don't want too.

Thanks Mary x I know how hard it is to change Oncologists, I should have done but haven't. Only because the team have been good up until we had a lot errors. I think if I didn't get on with them or found them obstructive then I would make the move. It's fairly easy, my sister has just transferred from a breast surgeon to another one. It took a phone call to her GP and she was referred to the new surgeon.

Good news Mary, that your tumour markers are going in the right direction.

Hope you all have a restful nights sleep.

Paula x

Highlighted
Community Champion

Re: Bone mets - please join in

Thanks for your replies Paula and Mary. Paula do you have any contact with macmillan nurses? I think with your difficult situation you could do with all the help that is out there and these folk will help you to be sure you are getting it. You just need to ask your oncologist or your gp to refer you.

Mary I find it appalling to read of the attitude of your onc. Do you have other oncs in the hospital that you could ask for a change? I don't understand why are are being tossed back and forth between him and the gp. I go the Royal Marsden and my gp hardly ever sees me. Apart from the cancer I dont have any other medical problems and the oncologists always tell me if I have any problems between clinic appointments just to ring up and ask to see them. I also have fantastic support from my Macmillan set up with their Doctor ringing me regularly to check up on the pain meds and negotiating with my gp as to what my needs are. The mac nurse comes out from time to time as well. Which part of the country are you in?

At this time of night I know I should be tucked up in my bed but I got so fed up with nodding off so much I took half a dexamphetamine to wake me up. Not exactly buzzing now but not quite ready for sleep LOL.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn,

My markers started going up last Sept, I think they were about 70,I had ct scan, which didn't show anything, then in Jan they went up again,about 100,I had another ct scan again that was clear,I don't know why I didn't have a bone scan,as my ribs were beginning to ache,and I did mention it to the onc! They continued to get more painful, I phoned BC nurse who suggested I go to gp,and get him to send me for an x-ray, again it didn't show anything, by this time was in agony and was told by BC nurse to back to gp, he wrote to onc asking for a bone scan, I didn't hear anything, and when I phoned his sec, she said onc had seen doc's letter, but didn't think there was any need to bring appt forward,so just to come in six weeks. Well I did get upset,and she did arrange for me to see him the next week,and my markers were up to 448!!! well the rest is history,had the bone scan, and of course it had spread to all the areas mentioned before!!! Needless to say I haven't got much faith in my onc, he is a most unapproachable man I have ever met!!! Anyway since I have been on Tamoxifen they were down to 83,a few weeks ago, still too high,but going in the right direction! 24 sounds great!!! I was told that between 35 to 50 was normal!!! I am only taking ibruphen and paracetamols at the moment,and they seem to be controlling the pain. Sorry you have that awful drowsiness,and hope something can be done about it. I too get blood tests every 3 weeks, so am hoping they are still going down when I go next week!!

Paula, sorry you had that nasty shock , so worrying for you as a single parent,and not nice to think you are in for a rough ride,in the next six months. I do hope your treatments are sorted out soon,and things improve for you.Sending you lots of love and hugs.

Thinking of you all,and hope you have a peaceful night.

Take care, Love Maryxx

Highlighted
Member

Re: Bone mets - please join in

Nice to see you Val x

Dawn I know you wasn't asking me but my tumour markers went up to 287, don't know what they were before as I had to errors to sort out and am not sure if they were measured. That is when they decided to put me on Capecitibane, Herceptin and Pamidronate. Unfortunately as I posted up ^ there the other day. I had a reaction was quite poorly. I'm off all medication for the moment.

Had a review yesterday and had a fright as my Onc said that the next 6 months to a year are going to be very difficult and you need to make sure plans are in place for your children (single parent). I was visibly taken aback and asked her what had changed since two weeks ago, She then went on to say she thinks the cancer is either much more active then they thought or my immune system is very tired, she hadn't meant that I was on the way out but predicted it would be difficult with hospital visits and treatment taking it out of me. Reeling I was. Just about got my head around it today.

I am going to have Herceptin next week again and start Megace hormone on Monday, as my third retest on hormone status has come back as ER positive 8/8 and HER +++. They tested the tissue from the highest node this time.

Thankfully the radiotherapy has knocked out the pain in my spine for the most part. I am just feeling very fragile and tired.

Review to see if I am strong enough for other treatments in a month. although they may stay away from the biso's.

Paula x

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Val,

I wondered where you had got to - you must be our longest surviving bone mets lass Smiley Happy. Good to see you joining in.

Mary as a matter of interest what are your tumour marker levels.
Mine are taken regularly every 3 weeks and have never hit the highs at any time. They hover around 12-24. When the tumour alongside my spine started causing the pain that I have, they started moving up from 17 to 24 but that is all in the region of normal.

I would also be interested to know what pain meds you are all on. I still haven't found the right combination. At the moment I am on 70mg day and night of oxycontin, 4 x fentanyl lozenges and 150mgs x 2 of pregabalin which unfortunately makes me soooooo sleepy. When I was on the pregabalin last year I also had some dexamphetamines for the sleepiness so I have resorted to just half of one at the mo to try and keep me more alert.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Everyone, I don't know how I missed this thread. I "know" a few of you who have posted here. To those who do not know me, I have bone mets in my spine, ribs, thorax and pelvis and have been having ongoing treatment for this for 11 years now ( first diagnosed with BC 21 years ago). I am on various painkillers, am on Femara and take Bondronate ( was on Pamidronate and Zolidronate before that). I have had 2 couses of Capacitabine (chemo) in recent years. At the moment I am feeling well. Best wishes to you all, Val XX

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn,

Thank you for replying so quickly,

I have quite a large area in both sides of my ribs, and have felt this sensation from the beginning,I mentioned it to the doc at the clinic and he gave a blank look and said that he had never heard anyone saying that before! My onc did say that he had heard people mention it, so I don't know why we get it!!! I also have skull mets,spine and right leg,and there is a question mark about my left leg! I am on Zometa and Tamoxifen and at the moment my markers are going down, also I am not in so much pain as I was,so I guess I will just have to live with this annoying feeling!!!

It is good news that your mets seem to be stabilizing, I asked the onc when was I having a scan to see if there was any improvement, but he said while the markers are okay, and I didnt have any new pain etc to report, that he wouldn't be doing one in the foreseeable future!!! I think I would like to see if anything had improved, it's good to get positive news!!

Take care,

Maryxx

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Mary,

Interesting you should say that it feels like a metal cage around your ribs. For several years I had the sensation of a steel band around my ribs. I only realised from your post that I haven't felt this for some time now Smiley Happy. My last surgery to my chest area was the 2nd mastectomy in 1999. I have always put it down to the surgeries and not the bone mets. I haven't had reconstructions apart from the VRAM which is in essence a recon without the shaping. I only had a few spots on my ribs and the last lot of bone scans don't show them so black any more. Indeed the extensive ones in my skull don't show up on bone scans but caused some confusion when I had a brain scan a couple of years ago. On the MRI brain scan they must show up in an unusual way because 2 consultants poured over them - certain they were not brain mets but not knowing what! My onc had said that I did not have brain mets because on recent bone scans they weren't showing and she did not know my history. When I said they were quite severe when first discovered everyone breathed a sigh of relief! But it just shows how we do need to be aware of our own histories in some detail!

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn.,

I have extensive mets in my ribs,and a few other areas, could I just ask you, do you get a sensation as if there is a metal cage instead of ribs!!! This feeling drives me mad, it is as if my ribs have turned to concrete!

Maryxx

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Linda,

Am I right in thinking that most of you with skin mets have not had anything done about them?

When my surgeon saw mine and did the biopsies he said I would have to have them removed but as I already had radiotherapy to the area the skin wouldn't stand any surgery just to the area of skin mets. I had to have all the skin, fat, muscle etc. removed from a large area - down to the rib cage. He warned me I might have to have some ribs removed as well if the cancer had got into them. It was really scary stuff. Then I had to see a plastic surgeon who pulled at the fat around my stomach area and reckoned he could get enough skin, muscle etc. from there to patch up my chest area. The took quite a large area from just below my rib cage right down to just above my pubic area and then pulled my stomach skin over to close it uop (bit hard to explain really but let's just say I had a good tummy tuck on the NHS) You all have heard of TRAM flap, well mine was a VRAM flap (V=vertical). It all seemed very drastic just for half a dozen 'flea bites'. I could have had my breast rebuilt with the flap but I said I didn't want a reconstrution so it is just a mound of flesh on the area where my breast used to be.

I have strayed a bit from bone mets but I guess we are all dealing with other things as well.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn

My skin mets were diagnosed in April 2008 and 2 tiny nodules in my lungs appeared in June 2009. At my last scan one nodule is now 13mm and the skin mets are all around both mastectomy scars, in exactly the area that I had radiotherapy to. Hows your pain now?

Linda
x

Highlighted
Member

Re: Bone mets - please join in

Hi everyone, Hope you dont mind me joining in, I to have bone mets on spine and ribs, havnt asked how many not sure I want to know, was diagnosed in dec 2005 after hip fractured. Have had 10 doses of zometa and now on arimadex and bondronat, had my overies blasted out and suffer bad with hot flushes, soooo embaressing, anyone else on arimadex suffering from joint pain and stiffness?? I keep my fingers crossed every 4 months when i see onc that all is well with bloods and markers, so far so good, just got to be positive.

Muddy and BoneyL, Hope all goes well with your scans.

Love
Roz

Highlighted
Member

Re: Bone mets - please join in

Hi Linda

I also have skin mets and lumps in lymph glands at collar bone. My skin mets are alone my lumpectomy scar and under my arm and around my breast. I hate the dambed things as you can see them growing. How long have you had them and are they still on the move or have they stoped at all?

Love Anne x

Highlighted
Community Champion

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Community Champion

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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. Smiley Very Happy

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Community Champion

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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!

Highlighted
Member

Re: Bone mets - please join in

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.

Highlighted
Member

Re: Bone mets - please join in

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.

Highlighted
Member

Re: Bone mets - please join in

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.

Highlighted
Member

Re: Bone mets - please join in

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).

Highlighted
Community Champion

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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?

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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