Bone mets - please join in

[dawnhc]

Hi finty - you have a good memory :). Crawfo - I was dx with breast cancer in 1990, then in 2002 with bone mets and they were extensive in my skull (I was amazed when I saw the scans to see loads of perfectly round black holes all over my skull), in all areas of my spine & sacro-iliac, ribs, collarbone, hips & pelvis. After 3 months they rescanned and yes the ones in my skull were no longer visible on bone scans! most of the other areas instead of appearing black were grey and shadowy. I started of on pamidronate for some 3 years then was switched to oral bisphosphonates but I didnt get on with them so went back on pamidronate. Then 6mths ago I was changed to zometa. This was because I had been getting increasing pain and the onc thought zometa was stronger. It now appears that the pain I am in is not due to the bone mets, but to a tumour growing outside my lower spine for which I had 5 sessions of rads. I have now had another MRI and a CT scan to check if I have anything else going on so fingers crossed that I still have 'only bone mets' (and the tumour) 😞 I will get the results on Tuesday.

Finty I know what you mean about the wedding and wondering if you would get to see your own children get married. I went through all that as mine were 16 & 18 when I was diagnosed. I have been so thrilled with each 'special' that happened in my life - like silver wedding then ruby wedding, getting my state pension LOL, seeing my daughter married and having our very first grandchild. Life can be good, but specially poignant for us.

Dawn
xx

[finty]

Crawfo I'm so sorry you are feeling so down, but you're not alone - although my mets are small there are ladies here with extensive mets that are doing well. My met also showed significant reduction through 3 cycles of tax (and we blasted it with rads for good measure) so I hope 5 cycles of tax will do an equally good job for you too. There is one poster here (sorry I forget which one - maybe Dawn?) who had skull mets that have healed and not returned.

Take care finty xx

[Guest user]

I now know that my mets are multiple in the skull, thoracic and lumber spine, pelvis, ribs and iliac bone. I found out the extent of the spread of the cancer from a letter sent from the hospital to my GP which I was copied in. I was starting to feel better about the whole thing but now I'm down again.

[finty]

I'm on zometa too - I think the 6 or 12 months will depend on how soon your bone mets stabilise. The zometa is a high dose given IV and is usually used after initial dx, but when the mets stabilise most of us are put onto oral bisphosphates - I'll be changing soon.

I think the answer to how do we cope is different for everyone - and not everyone does cope with it. But in time the initial panic will recede, and hopefully your treatment will go well, and you will gradually adjust to the new normal. My own personal coping strategy is to do all I can to improve my chances, so I have radically changed my diet, take as much exercise as I can manage, and tried to rid my life of any unnecessary chemicals. I don't know whether it will help or not, but it helps me to feel more positive. I will be going on a course soon to learn to meditate and do visualisation therapy. I keep busy and socialise a lot more. I have the odd wobbly day, but so far I am finding it manageable - but I don't know how I will cope if/when my cancer progresses.

Some things can be very upsetting - I am going to a friend's son's wedding soon, and I know I will spend the whole time wondering if I will get to see my children's weddings. But generally I have just taken a decision to not think too much about how things might have been, and focus on making the best of what is ahead. I don't think it is possible to forget about it - it's always there in the back or the front of my mind, but for now I'm not as frightened as I was.

finty xx

[Guest user]

Thank you for responding so soon. I have read some of the threads and it was inspiring but what I want now is for someone to tell me I am definitely going to die of old age. I know that's irrational and no one can say that but how do you go on knowing you've got something that is more than likely going to kill you. I keep thinking of my kids and how old they'll be if I die in 5 years or 10 years, whether I'll live to see them married or finish uni, (they're 16 and 23). I know it will get better and I'll come to terms with it eventually but right now I can't see the point in anything.

The treatment plan is for 3 weekly cycles of zometa for 6 or 12 months (not sure what it depends on) and 5 cycles of taxotere which I had all ready started on for the original tumour. After that the onc seems to be saying just wait and see.

[finty]

Hi crawfo - you've come to the right place, you'll find plenty of support here from people in a similar position. I am so very sorry that you have had this devastating news, just when you thought it was all going so well - we all know exactly how you feel. But as shocking as a secondary diagnosis is, having bone mets isn't necessarily as bleak as it sounds. There are many ladies that find their bone mets can be kept stable and have a high quality life, although perhaps not in the same way as pre dx.

I think my onc said the same sort of things as yours, but with a more positive spin. Certainly there is no cure (yet) and there are no guarantees, but she thought there was every chance that I would live long enough to die from something else!(I'm 51) I'm on two drugs that I tolerate very well, just some stiffness (which may even be a hangover from chemo, and not these drugs).

Perhaps it is too early for your onc to have given you a treatment plan - but I imagine you will be put on bisphosphates straight away to strengthen your bones. These are relatively new drugs and have made a huge difference to the treatment of bone mets.

If you have time read back over this thread from the beginning - you will find there are many here that have been around for years with bone mets.

Keep in touch and let us know how you are doing.

Love finty xx

[Guest user]

I just found out today that I have secondary bone cancer. I was first diagnosed with breast cancer in 2003 and at that time never once considered the possibility that I would die. In April of this year I was discharged by the onc and felt life couldn't be any better, I full expected to live a normal and long life. Within two months of being discharged I found a massive lump in the chest wall on the side where I had already had a mastectomy. Since then I have found a smaller one in the other breast and one at the top of my spine. That has now confirmed to be bone cancer. I have no idea how extensive the bone mets are, I was so shocked when I got the news, I didn't think to ask.

I don't feel any sense of hope at all at the moment. The onc was quite negative, his exact words were he couldn't in all honestly tell me I had 10 years (I'm 45). He also told me I shouldn't expect a normal life span but he couldn't say how long I had left as I could get run over by a bus tomorrow. Plus, I keep reading things like "incurable" and "palliative care" and how treatment from now is about prolonging life not curing the disease. I'll never be well again.

If I could use one word to describe how I'm feeling right now it's 'sad'

[Guest user]

Re DLA, I don't know what my Maccy wrote, but I got it within a week. I am now applying for the disabled railcard which will give me and accompanying person a third off fares. You just have to send a copy of your award letter. I am going to the Penny Brohn centre in October, hopefully, and this will help loads with the costs.I just have to get my head around the 'disabled' thingy.
x sarah

[Guest user]

Hi Claire

Sorry you are having such a hard time just now. Just to reinforce what the others have said you are definately entitled to DLA. I sent off for the form myself and took it to the local CAB office who were very unhelpful and said I would not be entitled to it because it was JUST bone mets!! Someone on the forum advised me to go to a mac nurse and she sorted it all out through special rules signed by my GP. I finally got it and it was backdated till the day I first sent off for the form - very nice!! As the girls have said it is not means tested - I am still working but it is a great help and you deserve it.

Good luck and I hope things improve with your radiotherapy. I have also had two blasts it on my spine and although I was very sick the first few days afterwards it was well worth it. Make sure to ask for some anti sickness tablets and I do hope it helps you.

Anne x x

[lizcat]

Hi Claire,

Just read your posting on this thread and the bit about work getting in contact with you re early retirement.

I was diagnosed just over 3 yrs ago and had bone mets and lymph involvement from the start. After a year off for treatment I tried to go back on a staged return basis doing 2 half days a week. I lasted 4 weeks before going off again. A month later, I asked to be considered for early retirement due to ill-health even though I was warned it would be highly unlikely I would get it at all. It was one hell of a struggle and took over 4 months but finally when the pension fund doctor saw my case he immediately granted me full retirement so I get my pension as if I had worked to 62 (company retirement age). I was just turned 43. It took a lot of adjustment but I'm soooooo glad I did it and the point of my ramblings is that I would say if the company are offering it to you, snap their hands off !! It's not easy but well worth it in the long run. I still get incapacity benefit and since Feb this year I've had dla - apparently I could have had it from the start but I've never had a Mac nurse and no-one told me about it.

Good luck with everything and if you want any more info on my experiences, feel free to pm me.

Liz

PS - What you said about the ripple effect of bc is so true and I've found the time after treatment harder than the treatment time itself (don't count the hospital trips for zometa and drugs now!)

[Guest user]

Wholly endorse what Rozvi says in her post...

I'm hoping that after my bone scan on Sept 8th it will be confirmed that I have treatable mets in either back or ribs where my current new pains are (original dx left shoulder - Tax x6 rads x5 aromasin,ad-cal,bondronat regime). All responded very well and have had 8 months like a good'un but recent pain issues suggest spread to me despite my last markers being good. I'm braced for more rads if nec but don't relish the prospect of chemo again... ho hum keep plodding on grateful that my marvellous Mac nurse has sorted out a recent bout of horrid gastritis and balanced the pain relief meds. bcc is ab. fab. but, face to face when the chips are down temporarily, where would we be without the Macmillan team?!

All the best to you all as we bump along the road...teachehrjy

[Guest user]

Hi Claire,
Just wondered if your surgery has put you in contact with the mac nurse yet,if not I would start to ring the surgery and ask them for a name and number so you can start the ball rolling. You are very much entitled to DLA and it would be one less worry for you if you got the money as in a lot of cases they will backdate it.Sounds like your company have your best interests at heart.
Hope you have fully recovered from the gastro enteritis. The rads should soon kick in and take away some of your pain, then you will be back on the road.
Please take care, lots of love Roz xxxx

[Guest user]

Hi Dawn
Sorry I didn't answer your question about my diagnosis. I was originally diagnosed in 1996 with the primary. Then in 2006 I had a lymph node come up in my neck for which I had chemo and rads. Then in 2008 came the secondaries in my spine and ribs. I have been on capecitabine for the last year which has shown good results in my blood tests, but obviously the mets have still been increasing in my bones at the same time, which was a shock, as I felt the chemo should keep everything in check. My Onc says I should be glad it's not gone to my liver or lungs and that the capecitabine must be doing a good job to have stopped that happening. I've just had a phone call from work, they say they would like to get occupational health involved and that it might be poss for me to retire on the grounds of ill health and draw my pension as though I was 65 (I am 44.) This might be a good option, as I am about to start back on the capecitabine again and it does make me very tired and I don't think I could work full time anymore. If I can't get DLA I may have to sell the house and go and live with my Mum as I don't know how I'd pay the bills. But I am waiting for my surgery to refer me to a Mac nurse and then I can talk it all over with her. What scary times these are, I don't reckon people have any idea what we have to go through, with the ripple effect of having cancer and all the troubles and uncertainty it brings.

Take care,
Love Claire x

[Guest user]

Hi Cromercrab,
Sorry, didnt mean to go over what you had already posted to claire, your post wasnt there when I read the page but then when I submitted there you were.I think the DLA is very helpful to us as you have pointed out.
Hope all you ladies are having a good day today.
Lots of love
Roz xxx

[Guest user]

Hi Claire,
Have been reading this thread with interest as I to have bone mets, I posted my history a few pages back.
I feel for you being on your own and having to go through all this hassle that we ladies have to put up with. I do hope you get relief from the pain with the radio.
I would seriously ask your mac nurse about DLA, it is not means tested and you should get it with having bone mets.When I first applied for it my mac nurse took the form away and filled it in for me, as some of the wording is quite scarey and you havnt got to take it litrely, as you should be able to claim under the special rules.
I hope all goes well, please take care.
Roz xxx

[Guest user]

I am very sorry to hear of your pain. As for DLA you should be entitiled to this as soon as you are diagnosed with secondaries. I found that the ladies on this site were a mine of information. Your macmillan nurse will help you with the forms. My wonderful maccy did, she filled it all in, all I had to do was sign and give my NI number.It is not means tested and I felt a little guilty at first about claiming as I am very lucky to have not much pain at present and although signed off work at the moment hope to return in October.She pointed out that it will help with utility bills( obviously when you are at home you use lights heating etc) car parking at the hospital, which are outrageous at our place, and phone calls etc. She even suggested that she may be able to backdate it to my dx date in May. The DLA should then open doors for you to perhaps be able to get a modified car, or at the very least a blue badge. The maccy will be able to help you with all this and may go a long way to making practical things better.
x sarah

[Guest user]

Thank you all so much for your responses. It does make me feel better. I am trying very much to feel that this is a hump to go over, and not the end of the road, although one family member thinks I'm on my last legs! I have just had gastro enteritis and am recovering from that - I guess the enforced rest I have had due to that has helped rest my arm, which is less painful now, but I hope the rads takes away the numbness and pins and needles which is really annoying. And I desperately want to be able to drive again. I haven't been able to drive for a couple of months because the pain is too bad and driving makes it worse. The Onc is referring me to a Mac nurse, and I hope to talk to her about the possibility of giving up work, but that would only be poss if I could actually get DLA, as I am on my own with children and can't afford to lose my salary and Tax Credit.

Take care everyone.
Love from Claire

[Guest user]

Hi Claire, I've had two separate sessions of radiotherapy in the last year, both to the spine. The first one took a few weeks to show improvement but the last one about 8 weeks ago gave me relief almost straight away. Depending on where the radiotherapy is going to be given, anti sickness tablets and a few days of steroids are given. These worked well for me.

Best wishes

Paula x

[Guest user]

Hi Claire, you certainly have alot to take in at once but when I was speaking with my Onc two weeks ago she didnt seem bothered as to how many place in spine mets were but the fact that that are contained makes the difference. Im still waitng for my reslts of my cat scan so dont know if Im anywhere other than multiple spinal mets at moment.

I had my one off radiotherapy dose 16 days ago, before which the pain was exruiciating, it still is sometime but there are moments to where pain has definetly decreased, One couple more big bonus' for me is that I can move my feet and toes more and the twitching/numbness to my legs/buttocks/vagina are improving too so its must be working in some positive way.

The worst part for me has been the sickness but I was very low before I had rads, I had gastroenterirtis so didnt feel 100% ready to deal with rads but didnt want to wait any longer as the pain was too much to handle. Yes 2 weeks on Im being sick about 2-3 times a day but maybe you will take to anti-sickness better than I did.

For the discomfort I have had over last 2 weeks the positives have far out-weighedthe negatives and if you can think positively that this isnt the end of the road its just another hump to go over Im sure you will do the rads and see an improvement.

best of luck follow you instincts they rarely let you down xxxx Ann B x

[scottishlass]

Hi Claire, I have had radiotherapy on my lower back and also my ribs twice. Unlike other radiotherapy I only had one session for my ribs but my lower back I had a few sessions, but not a full week. I didn't notice instantly but it did help and the benefit has lasted for a long time. I had tattooes on the spots but they are smaller than my freckles so not noticable. I am sorry that you have had this new diagnosis. I hope that some painkillers may help. Any questions at all, just ask me. Take care. Love Val

[dawnhc]

hi claire,

so sorry to hear that your bone mets is worsening. How long since it was diagnosed and what treatments have you been on for it? I have had radiotherapy to various parts of my bones including the neck, both hips and twice to the lower spine. I don't think many people get instant relief - sometimes it can get worse for a few days before it starts to get better. It is worth knowing that 'cos to find it getting worse can be quite depressing if you don't know why. I think everyone reacts differently but for many it does bring relief and often it is long lasting. My neck and one of my hips was zapped about 8 years ago and have not given trouble since.
Hope this helps.

Dawn
xx

[Guest user]

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

[Guest user]

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

[Guest user]

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

[Guest user]

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

[scottishlass]

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

[Guest user]

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

[scottishlass]

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

[Guest user]

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

[dawnhc]

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

[Guest user]

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.

[dawnhc]

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

[scottishlass]

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

[dawnhc]

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

[dawnhc]

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

[Guest user]

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.

[Guest user]

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

[Guest user]

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

[dawnhc]

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

[Guest user]

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

[Guest user]

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

[dawnhc]

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

[scottishlass]

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

[Guest user]

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

[dawnhc]

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

[Guest user]

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

[dawnhc]

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

[Guest user]

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

[Guest user]

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

[Guest user]

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