67285members
354908posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

hi claire

sorry to hear of your bad news.

i had radiatherapy to my lower back and also my left rib cage back in february which had been causing me excruating pain it took a week or two but the pain virtually disappeared I do have to say though in the last fortnight the pain has returned lasting for a few days but again has eased off for now.

max x

Highlighted
Member

Re: Bone mets - please join in

Hello Everyone
I got bad news at the hosp the other day, basically the cancer is in every vertebra in my spine, going right up into my neck, and it has also spread to the humerus bone in the shoulder. It has been the cause of intense shoulder and arm pain for the last few months, which I had been told was tendonitis, but it's not. I am going to have a blast of radiotherapy on the shoulder next week. When you have radiotherapy on a bone, does it give you instant relief from the pain or does it take a while to take effect does anyone know? Also, will this only be a temporary measure and will the pain return?I am really down at the mo, if anyone can encourage me, it would be great.
Best wishes to all of you,
Love from Claire x

Highlighted
Member

Re: Bone mets - please join in

Dawn I am on 900mg gaberpentin per day. Along with the pain relief I am also on zopiclone which are sleeping pills. So yes I do have trouble with sleepiness, but not often whereas I do have more trouble with fatigue - these of course are very different from each other.

I have managed down my oxycontin last year, but I had not realised that this would involve going through withdrawal symptoms which were horrendous. I do consider managing down even more, but as I have been in pain of late I am querying the wisdom of that.

In terms of arthritis, the scan has been able to identify that which is cancer and that which is arthritis - I imagine they have different signals.

Celeste

Highlighted
Member

Re: Bone mets - please join in

It must be difficult Val to have your help taken away. I hope your husband has a speedy recovery.

I have been thinking about all the avoidance stuff that I do and it would probably be different for some people depending where the bone mets are.

I never travel by bus anymore, they jerk and jolt you all over the place, had too many days of pain following a short bus journey. I also have suffered from sitting on all types of chairs apart from my desk chair, hospital appointments are a bit of a nightmare as you sometimes end up sitting on those hard plastic chairs for a couple of hours. I figured out that in my desk chair I lean forward to use my computer, taking the weight off the base of my spine. So now when I sit anywhere I lean forward slightly - the difference its made is pretty impressive.

There are plenty aids, for gardening and suchlike on the mobility sites to avoid bending. Not that I do gardening but I know a lot of people do enjoy it.

I am sure there are loads more avoidance techniques I do but the taking the weight of the base of my spine has helped me the most.

Best wishes to all x

Highlighted
Member

Re: Bone mets - please join in

Hi Paula, It is interesting to hear that you avoid doing things too. I find if I have a busy day...or a day on my feet....or suchlike, that I need to rest the following day. You learn to get round things as you go though. I have learned to ask for help....but as my husband is in crutches just now I am having to do things just now that normally I would ask him to do. Still it makes a change being a nurse instead of the patient....just wish I was more patience.... as he is not a good patient at all! Love Val

Highlighted
Member

Re: Bone mets - please join in

Interesting Val about watching what you do. I am pretty good with pain at the moment after a blast of radiotherapy. I have constant dull ache in L1 as the body of the vertebrae has disintegrated but I have found that I can keep that at an acceptable level by avoidance techniques. I do not bend to pick stuff up, I have one of those litter picker things (very helpful). I plan my driving trips so that I have a day to recover as that will set off pain. I used to forget a lot but have learned that bending to pick something up can lead to weeks of bone pain and trigger off nerve pain.

I can't take Oramorph, the only time I did I had to have a DR come in to give me an injection to stop me vomiting. I tolerate Oxynorm though but only take that now when I need it.

Paula x

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn, to answer you question about dosage of morphine.
When I first started taking oramorph I felt very odd, dizzy and light headed. But you need time to get used to it. Yes you can reduce the dosage of MST (morphine in slow release).
At my worst I was on 120mg a day and because I have other painkillers now after visiting a Pain Specialist at my hospital, I have managed over the years to reduce the dose to just 20mg a day. I have been on 40mg a day for over a year now and seldom need to resort to liquid Oramorph. But my Consultant did plant a seed in my mind when she wondered if the breakthrough pain was triggered by something I was doing. So I stopped trying to lift things, like carboard boxes in a storage cupboard, and pushing the hoover around. I now THINK before I attempt to do anything and they pain is now under control. My GP is happy now to let me decide when I need to increase/decrease the amount I take. Hope this answers your question. Love Val

Highlighted
Member

Re: Bone mets - please join in

Hi everyone

Haven't had time to catch up on all the recent posts but in answer to Mary's question about a referral to the Marsden I did this recently and have continued to have my Zometa at the local hospital. As you know I am waiting to see if I can get on a trial at the Marsden (very slim chance I meet the criteria). If I do I will have to go to the Marsden regularly for trial but will continue to have Zometa locally.

I am so pleased I asked for a second opinion at the Marsden as even if I don't get on trial they recommended my next chemo as I was very unhappy with the continual change of onc's I was experiencing at local hopsital - all saying different things. Well worth thinking about a second opinion as they were fantastic at Marsden.

Love Anne x x

Highlighted
Member

Re: Bone mets - please join in

Hi Isobel,

You sound as if you have been through bad times in getting your mets diagnosed. The tales that get told of GPs treating women like us for 'just' backpain and that dismissive way is horrendous especially as you have a history of bc.

It was such a good idea of finty's to start this thread. I often used to look with envy at the liver girls thread and thought there weren't that many with bone mets, or that they had 'just' the one or two hot spots. It has been good to find so many more here to talk about the problems we experience, and indeed what can be done to help. I know what you mean about the nerve pain and how it affects the thighs - for those fans of BB 'I'm buzzing' 🙂 but I find the pain does last longer.

To those on opiod's and additional meds for the pain, have you found you are able to reduce the amount at any time or is it an ever increasing spiral of the body getting used to it and needing more? Like some of you I suspect, I was one of those that didn't like taking pills for anything!

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi - yet another one with bone mets.
I was diagnosed late last year, following having had, bad back pain, for much of last year. After many visits to the GP for pain medication, I was referred for a bone scan, which they thought showed a fractured vertebra at T11, due to Osteoporosis (if only). Finally, after developing neurological symptoms - and again being dismissed by the GP - I was admitted for an MRI and the rest as they say, is history. I also had spinal cord compression, due to the fractured vertebra. I had an op to insert metal rods and pins, to stabilize my spine. 6 weeks later I had radiotherapy. Since then, I started on Letrozole and just recently, Herceptin.
Pain wise, it has taken a long time for things to settle down, but I am now managing with one Cocodamol and one Paracetamol, which I take 3 times a day. I am also on Pregabalin 200mgs twice a day, for the intense bursts of nerve pain which I get in my thighs. It only lasts seconds, but it's a burning/stinging sensation and it jolly well hurts!
Thanks for starting this thread - it's interesting to read others stories. Pity we even have to be here and read them at all...!
Cheers
Isobel.

Highlighted
Member

Re: Bone mets - please join in

Hi Val,

I so agree on the 'tomorrow's another day' philosophy. I love to get out on the nursery and tend some of the bonsai - I get carried away and spend far too long but heck it's worth it even if I do pay the price the next day. My markers taken are the CA125.

On the morphine based pain meds I am told that oxycontin is double the strength of MST so 70mgs of oxycontin = 35 morphine. I was interested in the comparison because I was on a trial at the Marsden a while back trying to find out why some patients coped with one better than another (oromorph and oxynorm: MST and oxycontin) I am one of those that can't manage oromorph - it makes me sick! I have just changed the 50mgs of amitriptyline I was on to pregabalin because I really struggled with the ami when I needed to pee - it could take forever sometimes to just squeeze a few drops!

I think you better look after your man well and get him back on his feet asap LOL - sorry he is suffering though.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn, Which tumour marker are you talking about? I have CEA and CA125 taken each month when I am on chemo. Before I go to see my Oncologist for a check-up every 3 months I have them both done at GPs. They have been very useful when having chemo to monitor how the chemo is working. I remember after the first course of Capacitabine the tumour markers went down by half..it boosted me up. But the Oncologist says that they cannot rely on the markers alone. Generally speaking though when I am feeling worse than ( my new) normal the markers have risen. But my marker numbers at my worst were in thousands not under 50. I have them in a diary if you want me to look them up.
As for painkillers, I am on MST 20mg twice a day, diclophenac slow release 75mg twice a day, Gabapentin 600mg twice a day, amitryptilene 25mg at night. ( Sorry spellings all wrong but too tired to go and look up!). I would say at the moment I am feeling better than I have for a while. Yes I do get tired and as my OH is in plaster and using crutches I have to do more than usual as he is normally my carer....how dare he!! He will be in plaster for 3 months as he has ruptured his Achillies tendon on holiday! I know I will be back on chemo again before too loing but am enjoying life even more that I am not on the blasted chemo this summer. I even managed to do a little weeding in the garden this evening. I know I will be sore tomorrow....but that's tomorrow isn't it! It was so lovely to stand in the garden tonight watering the plants while listening to the birds, and all the lovely smells that the night garden brings.
Love to all here. Val XX

Highlighted
Member

Re: Bone mets - please join in

Hi Mary,

I think if you wanted any sort of 2nd opinion it wouldnt be difficult to ask for that from the Marsden. I think it is either your onc or your gp that can ask. I doubt though if they would take over your regular treatment as there would be no reason you couldnt have it at your local hospital. Do you have a PALS in your hospital - ask about it and if so they can help you liaise and ask for a different onc within your present hospital. I imagine that would be more satisfactory. It seems really hard if you feel intimidated by your present one - it just shouldnt be that way. Also why not try and renew the contact with a macmillan nurse - maybe for some reason when your original one left you just fell out of the system. It could be very helpful for you to have the contact if they have one you could get on with.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Celeste,

I am glad to find someone on similar pain meds to myself. I am up to 70mgs of oxycontin twice a day but they are trying to get me to up it and I am not too happy to do this. Also taking pregabalin which is similar to gabapentin. How much of that do you take? and do you have a problem staying awake on the combo?

I have often wondered about arthritis if if any of my hip pains can be down to that. How do you find out if that is causing the pain and not the bone mets? I remember when first dx with 2ndaries that there was mention of osteo arthritis in the lower spine. At the moment they seem to think the pain is due to the tumour growing alongside the lower spine. Sorry so many questions but nice to find someone a bit similar with pain control.

Dawn
xx

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
Member

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
Member

Re: Bone mets - please join in

Hi Val,

I wondered where you had got to - you must be our longest surviving bone mets lass :). 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
Member

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 :). 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
Member

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
Member

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
Member

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. 😄

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