I have had extensive bone mets since 2002. At the original dx of this I had radiotherapy to my left hip and top of spine (C2/3 I think) and have been on pamidronate 3-weekly and herceptin since then. I have had the odd hiccup but been relatively pain free most of the 6 years. For about 5 months now I have had problems with lower back and hip/thigh area which initially wasn’t too bad and after taking regular pain killers seemed to improve and was then relatively little pain for about 4 weeks. It flared up again about 3 weeks ago when I was on holiday so on my return I contacted the macmillan nurse and was put on MST & oromorph plus paracetamol & ibuprofen. Have had to double the dose of MST. I put off rads for some time because I felt they had not pinpointed the root of the problem but when the pain returned I got the pins & needles and numbness in my right thigh & buttock plus really severe pain in the femur & hip. When I saw the rads onc last week she thought from my description of the pain & what she saw on the scans that I had 2 areas causing the problem even tho the scan reports said stable - both the lower spine and the hip so I started on rads yesterday and will have 5 sesions.
Previous radiotherapy I have responded to well and quickly. This time I have been warned it can get worse before better and would like to know if any of you have had rads for bone mets what your experiences are. Last night was certainly the worst I have experienced yet!! and that was just after one treatment.
I was surprised at the changes since I last had rads. The Marsden have a beautiful new radiotherapy unit - more like walking into a 5-star hotel reception area!! The planning sessions are so improved as well - no longer those awful long drawn out sessions when you feel like you are a slab of meat being prodded and pulled. The planning is now done on the CT scanner and only took 20 minutes. I talked to the staff there about some peoples bad experiences and the insensitivity of rads personnel and they said people really should fill out comment forms and tell of those experiences - sometimes staff are just not aware of how they come across to the patients and they think it would be helpful to let them know.
Hi Dawn
I’m sorry to hear that you are in pain right now - I’ve heard that things can get worse before they get better (although not experienced this myself). I just hope that it does the trick and make sure they give you enough painkillers to sort you out - don’t suffer in silence.
Hi Dawn, I had rads to the sacrum a few weeks ago…the pain was worse for about 3 days after the rads and then it vanished…was so pleased I’d had the radiotherapy, I was getting pain in hip which was going down leg to knee…Hope you feel the improvement soon…Belinda…x
Hi Dawn
I had rads to left hip base of spine and back of neck in Feb this year. It was 3 days before I started tax & avastin and the rad team told me to expect a bit of pain and to mention it to chemo on the Friday.
I was in a terrible state when I went for chemo the Dr checked me over and told me I was in for a rough ride. Boy were they telling the truth, my windpipe was badly burnt I could not swallow left leg did its own thing and I felt ill for the 1st time. It took several weeks but it did get better and the pain just left as it came. But what a bl…dy relief.
Hope it soon improves I am sure it will.
Take care.
I don’t know if this will help but my mum had radiotherapy for her bone mets in May. They warned us about a flare up and she was a bit worse for a couple of weeks after treatment. It took about six weeks for her to really feel the benefit but she is moving around much better now. She’s also on Fentanyl patches for the pain which have worked very well for her. I hope you get sorted out soon.
Not sure whether I mentioned to you before but my last lot of rads (Feb/March time) have been the worst in that the pain didn’t go immediately and I had really bad fatigue for quite a while afterwards which has never happened before.
I was told though that they’d be ‘zapping’ it more so whether that meant it took longer for the bones to recover or not I don’t really know.
Hi Dawn and anyone else out there in the same position
I had radiotherapy on Monday (just one dose) for secondaries in hip and yesterday the pain was much worse than its ever been. I’m panicking because although i know it wouldnt give me relief right away i didnt expect it to gewt worse. I’m also taking MST and oromorph, diclofenac and paracetamol (hows your bowels by the way!!). I hate taking all these pills just want to get rid of the pain and for life to return to normal - well as normal as it can be. How are you feeling now, have things settled down a bit?
Please call our specialist nurses on the helpline for advice and information about the increased pain you are experiencing following your treatment on Monday, the number to call is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Thanks to all of you for your comments. It is now a week since I finished 5 sessions of rads on hip and lower spine so I thought I would update this. They were right!! the pain has got a lot worse, particularly in my hip & thigh. They also told me I might feel nauseous. Yes I did but it still hasnt stopped - even been sick a couple of times. I am falling asleep a great deal of some days but am sleeping well at nights generally. Mornings are the worst with pain and nausea even though I am on slow release morphine (MST) at 20mgs twice a day plus breakthrough oromorph, paracetamol, ondansetron, omeprazole, senokot (of course!!!) was on ibuprofen as well but have been told to stop that cos they are concerned about my reflux prob. Have any of you found pain meds that work better than morphine. They don’t really want to up mine as they are hoping the pain will ease - so I continue swigging the oromorph :). I have found the marie-curie nurse to be so helpful. They phone every couple of days - evenings as well. Trish how much MST/oro are you having? I was fine for the days I was on rads with bowels but they have since rebelled. I was quite amused at the statement by the rads people that I would probably get diarrhoea as a result of the rads, and by the marie-curie nurse that the medications would cause constipation LOL - i can assure you they don’t cancel each other out!.
while i’m really sorry you are going thro a rough patch just now god its comforting to know that i am not alone and that this pain seems to be par for the course. I was sitting in the garden yesterday thinking is this it, am i going to be a cripple now, i’m not one to normally feel sorry for myself but i have to admit this is getting me down especially is i cant get to all the sales that are on just now!! i am on 40mgs MST twice a day and 15mgs of oromorph in between. (i might need to take some extra soon as i have not ‘been’ for 6 days so i dread to think what state i’ll be in then ha ha). i’m taking part in a bone pain trial for 4 weeks post radiotherapy so a palliative care dr phones me every couple days to see how i am doing and increases the pain killers. he said yesterday that when you take oromorph if it hasnt worked within an hour then take some more so yesterday i took 3 lots of 15mgs in 3 hrs god i felt a bit rough, had to go to bed but must admit i slept well. Like you i sleep ok at night and the pain is generally worse in the morning, have you had radiotherapy to hip and spine before or is this your first shot?
Well Dawn i hope your pain goes soon, you just waken up every morning hoping that some miracle has happened and that when you swing your legs over the bed things are back to normal eh. I hope it happens soon for us and everyone else who is in a similar position. Take care and let me know how you are doing.
Trish
ps Lucy thanks for the number, will phone today, didnt phone yesterday as was unable to string 2 sentences together
sorry just read your original post and see you have had rads before, thats another problem no memory, its nearly 3 years since i had chemo does your memory ever come back??
I’m still catching up on the site after my holiday and have only just seen this.
I’m so sorry to hear that you’re in pain and I do hope it gets better soon.
The diarrhoea /constipation business sounds difficult. Have you tried adding lactulose to the senokot? It might make things easier.
I hope you start to feel better very soon.
Take care
Anthi x
I think this period is pretty tough to get through. I know they told me things would get worse before better for at least 2-3 weeks. At the time you are in so much pain you just want them to fix it and think 2-3 weeks is manageable, but it soon wears you down. Are you having problems with nausea on that dose of MST/oromorph? What are they doing for your constipation 'cos 6 days sounds dire to me!! have found the senokot is working o.k. How recent is your dx of bone mets? I do remember that time 6 years ago when mine were dx - I really thought that I hadn’t long left and if anyone had told me then that I would still be here 6 years on I would have been amazed especially when it had spread so much. But this is the first time I have had such bad pain since then so yes, roll on the day I wake up and it has gone. I found this morning the pain was bad but within 30mins of taking just the MST and paracetamol it was a lot more comfortable. Let’s keep in touch trish and compare notes
Anthi, I do have movicol I can add in during the day if I need to but so far things haven’t got too bad.
I’ve had several rounds of Rads now for hip, pelvis, shoulder blade and oesophagus. Each time the pain is so much worse about 1 week after fiishing and gradually eases. It usually takes about 4-6 weeks for e to feel the benefit of the rads but it is worth it.
Pain control - so unpredictable. Is it bone or nerve pain? Usually I find the rads irritate the nerves and so then I take things like amytyptylline, garpentin or clonazepam for that pain and it is more effective for me than upping the MST.
Such a balancing act to get pain control, diarrhoea nd constipation right. Am now on amazing amount of laxatives but they said if it works to carry on with what I’m taking!!
Hope you feel better soon all of you - it’s a long haul with rads sometimes but worth it in the end.
Kate
How are you doing? Hope you have had a good weekend. Well i’ve had a mixed weekend, was really sore on saturday, could hardly put any weight on my leg, by the evening and after a few doses of oromorph it started to get better. Yesterday wasnt quite as bad and this morning i feel really good, have got a wee bit pain but nothing compared to saturday so hopefully the radiotherapy is starting to kick in. Fortunately the morphine doesnt make me feel nauseas and my bowels now have a life all of their own. Dr gave me bisacodyl to take 2 at night but i think i’ll cut it back to one!. I was told i had secondaries about 5 or 6 weeks ago now although feels a lot longer than that. On the whole i’ve been ok, cried a lot at the time but once i get this pain sorted and get back to work i will bash on with the treatment and hopefully life will return to normal (ish). I’m lucky that i have a really good husband, he feels useless and thinks there is nothing he can do to help but apart from helping me practically around the house he listens to my fears and makes me laugh and i wouldnt be able to cope with all this without him. Dawn did you have rads when you were first diagnosed with bone mets and were you able to stop taking pain killers when it kicked in?
I hope your feeling a bit easier as well and i would love to keep in touch, i’ll send my email address if you like, i assume i just type your name in the private message box?? - pc’s arent really my forte ha ha.
Kate - it is bone pain i have, the palliative care nurse tested my leg to see if it was nerve pain but i wasnt sensitive to the tests but your right it is a fine balancing act that i haven’t quite mastered yet. Glad the rads work for you and i’m sure i’ll feel the benefit soon, just need to be patient eh.
It is strange how the pain comes and goes and shifts around. Just when I thought yesterday things were getting better and have gradually reduced the meds i comes back and bites you in the bum - literally! Yesterday it was more pain in my lower back - the hip actually felt a lot easier and i could put weight on my leg. I get a lot of numbness and pins&needles in buttock and thigh. But this morning the bad pain is back my thigh.
I did have rads when I was first dx with bone mets. My left hip was then the main concern and the top of my spine. I gather the peg on the vetebrae near the top is really bad - the one that has a peg that allows the head to turn from side to side. So I had rads to both those areas. I can’t really remember having a lot more increased pain then, but it was all so new and those first 3 months of dx were pretty painful and I was on a lot of meds at the time. I was on the bisphosphonate - pamidronate and after about 4 treatments of that I was relatively painfree for the next few years. So I think I have been very lucky as i had a lot of bone involvement - my skull, collarbone, ribs, all areas of spine, and whole of pelvis and right hip. Like you I have a hubby of 42 years! and he really has been such a great support. I think they do feel very helpless in that they can’t do anything to take your pain away but they sure do make life a lot easier with their practical help and empathy. Would love to exchange emails and have pm’d mine. Yes when you reply make sure you put my name just as you see it at the top of our posts - in the box.
I am very interested in this thread as my ONc is considering giving me rads to hips and spine but after reading this I’m not sure. I have widespread bone mets. (also have mets to liver and lungs) asked to look at bone scan last week which I had in May and was really shocked at the extent. Seems to be everywhere spine, pelvis, skull, ribs although not in femur. I get lower back pain and hip ( esp rt hip) which sems to radiate down my thighs. I’m taking mst 30mg bd and also paracetamol and votarol max dose. The pain ins,t horrendous but means I cant walk very far without being in pain. But the pain you all describe sounds much worse so not sure what to do.
