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!
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!!
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
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 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.
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.
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.
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.
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!!
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.
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.
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.
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
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.
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.
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!
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.
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
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.
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
but I find the pain does last longer.