We had a really nice evening. My husband is brilliant and did all the clearing up etc.
It's strange really because I wasn't offered the print out at the hospital although they told me more or less what it said. I went to see my GP later that day (haven't seen him for 3.5 years and he wanted to see me!!) and he just printed it out and gave it to me. I must admit that I didn't read it Friday night but plucked up the courage to read it on Saturday and it was really what I thought was going on inside of me! I don't know whether I would actually want to see x-rays!
I just have a feeling that at the moment for a lot of ladies on here they seem to have things that they can still give us. I'm changing from Pamidronate to Zometa and have been told I shouldn't really notice any difference although it is stronger.
Look after yourself.
Thanks for info on chemo will write down what your on for future ref. Sorry about the discs out of place hope that something can be done for you soon. Was too much of a coward to ask to see my MRI scan
Have a lovely evening with your friends
Thanks Belinda - have already cooked the meat in the slow cooker overnight.
My GP gave me a print out of my MRI scan - fascinating reading!!! Having read it through again there's 3 discs out of place so no wonder I can feel something!
Roll on Tuesday when I can start to get back to 'normal' again. Had to cancel a meeting with a GP regarding an idea I have with secondaries which I didn't really want to cancel but my oncologist basically said my bones were more important than the meeting! Ho hum......
Hi Barbara and Belinda
I'm now postmenopausal so will ask my oncologist when I next see her. The worst my Alk Phos has ever been (when first diagnosed with mets in 2004) was 495 and the best it's been is 112 but has slowly crept up to 175 so I knew something was going on.
It turns out that I've got two discs out of place as well so no wonder I've not been walking brilliantly just lately!
The chemo I'm on Barbara has to be the best one I've ever been on - Xeloda but am on a low dose so don't get a lot of problems some ladies on here to with their feet and hands.
Am cooking for 8 tonight (!) but my husband is brilliant so he'll be probably doing most of us!
Hi Carol /Belinda
Faslodex is given by intramuscular injection once a month but is only suitable for postmenopausal women. Don't know whether you can have chemo and Faslodex together but onc said that some women were taking a combination of Arimidex and Faslodex. Might be worth mentioning to your onc Carol to see why it has not been recommended
Tumour markers don't work for me Belinda and I wanted to laugh yesterday when the onc looked at the blood test results and said that they were ok except the Alk Phos level had risen to 110 which is still acceptable. I would push for an MRI scan Belinda as that will show clearly what is causing your leg pain.
Feel cowardly about the chemo route and I am full of admiration for the girls who post and say how ill they are on them but they keep going, sometimes trying to bring up children at the same time. So I really am hoping that he has got enough hormonals in his bag of tricks to keep me going.
Love Barbara x
Carol and Barbara..following your posts with interest..I'm sorry to hear your news..wonder if I might be in the same boat? Still have quite a painful leg, will get tumour markers taken in a few days.
Love to you both..Belinda...xx
Thanks for post.
The reason I was given for stopping my chemo (capecitabine) is that she thinks it'll be too much for my body to cope with as she's prescribed dexemesthatone (sp!) as well to protect 'things' in my nether regions!
I've have very little side effects with it (also known as Xeloda) but I'm on a lowish dose because of my liver involvement and the state of my liver.
Interesting you saying about Faslodex as it hasn't been mentioned. I wonder, because I'm on chemo, that's why it hasn't because I was under the impression that while you're on chemo you can't be on any hormonal things?
Sorry you won't be at the Ritz - I can totally relate to your sense of direction though because if I turn out of a shop on the left hand side that's the way I'm headed!
Sorry to hear your spine is playing up again. Bit confused about the sentence re stopping chemo whilst you have rads but you don't take anything now. Which chemo do you take and have you had any side effects because my onc has spoken for the first time about chemo for me as an option.
On the subject of there not being anything else available for you to take has your onc exhausted all the hormonals? just thinking about the Faslodex.
Don't think I will be going to the Ritz although it sounds great. I can get lost in Stoke if I take a wrong turning so I can imagine what would happen if I ventured to the great metropolis alone lol
Snap! Saw my oncologist today (which wasn't scheduled but she's got my MRI results through) which show that my spine is active again (has been pretty good for the last year or so) but it's my lower spine this time T4-7 and my neck so am having radiotherapy next week starting on Tuesday for 5 days.
I've got to stop chemo whilst on it and for 10 days following that.
I don't take anything now - not sure whether that's because there isn't anything else I can take?! The Exemestane worked for about a year but we're all different so hopefully you'll get a good result from it.
Good luck with your rads - I'm still determined to go to the Ritz!
Scan results showed that cancer is active again in the pelvis and now in spine. Onc is concerned about the state of the pelvis because it was badly damaged when mets first dx.
Arimidex has stopped working and so he is trying to get me onto a trial where 2 out of 3 take Faslodex and the other one takes Exemestane. Notice that didn't work for you.What do you take now ? He is going to speak to an orthopaedic surgeon to see if anything can be done about the pelvis.
Will be starting 10 sessions of rads soon so fingers crossed the damn thing can be blasted away again for another 18 months
Best wishes Barbara
The reason why I asked about the 'toilet' without saying anything much to you at the time was that it one of the symptoms of spinal cord compression (inability to wee) but I'm sure your oncologist would have checked that out.
I agree with you, the MRI machine isn't the best of scans! I always close my eyes as well. They put a pillow under my legs this time which made it a lot more bearable as I find if I'm lying flat my back goes into spasms.
I remember being on Tramadol and it spaced me out completely!! Am now just on cuprofen with a cover for my stomach but I know what you mean about not being able to sleep that easy.
Bit of a bummer isn't it going all that time in remission (I was 10 years) and I think you start to feel that maybe, just maybe, you've cracked it but it obviously wasn't the case for us.
The Arimidex stopped working for me and then I had Exemestane which also stopped working but have been fairly symptom free since September 2006 (was diagnosed with mets in 2004) and really don't want to go back to not being able to walk properly again (I'm noticing that I can't stand for as long as I have been).
Good luck tomorrow - let me know how you get on as well.
No in answer to your question about the toilet. No probs at all and the first sign of pain (other than the ones associated with the hip area) was on Saturday the shooting pains started in both legs but were managable but by evening the back pain was horrendous. It was more uncomfortable lying down than standing up so was awake nearly all night. Slept for most of sunday dosed up with tramadol and then sunday night the back pain just went but not the groin pain or leg pain. when I spoke to onc I got the impression that he thought the spine might be affected hence the MRI scan. never had one before. Hated being in the tunnel had to keep my eyes closed all the time otherwise would have pressed the panic button.
Have only had mets for 18 months after going 12 and half years in remission so I thought I would go longer before having any more problems. Perhaps the Arimidex has stopped working. Will get results on Thursday.
Good Luck with your MRI and Bone scans. do let me know how you go on
Best wishes Barbara
Thanks Pinkdove and Barbara for the info, good luck with your scan results.
Barbara and Belinda - I hope you're both feeling better (well I really hope everyone's feeling okay).
I'm definitely taking it steady tomorrow, had a walk last night (in training for Race for Life - it will take me a full day at this rate!). Felt okay this morning and decided to clean the shower cubicle, after being on my haunches the aches are back. Will we women ever learn and say sod the h*******k when we are having a good day.
Take care everyone, nite, nite
Your experience is similar to mine - although I've been with spine mets for 3.5 years I've had 3 MRI's during that time (once at initial diagnosis, one 2 years ago and one today!). And it's been the same with bone scans having only had 3 during that period.
Hope your back pain is sorted out - have you had difficulty in going to the toilet as well? Might sound a strange question but just wondered whether you've experienced this because of your saying you've had shooting pains in both legs.
Two weeks ago I started with sciatica pain in my left leg and I feel it's because my bony involvement might have become active again. Only saw my oncologist on Friday and had the MRI scan today followed by a bone scan next Monday.
Have just returned from having an MRI scan to lower spine and pelvis. Original mets were found in pelvis and were zapped with one dose of rads and everything was fine apart from niggles in the pelvis which normally went away after a few nurofen. But this weekend had terrific back pain ( followed by groin pain and shooting pains in both legs). Have had no symptoms previously so felt scared. When I have asked onc in the past about having regular bone scans he has always said there is no need and so apart from first scan in 06 have only been monitored by blood tests. In answer to ferbers( Jen) question about bone scans I'm not sure it's a good thing to keep filling us up with radiation dye so maybe an MRI scan would be a better option for you
I've had spine mets for 3.5 years and my oncologist has said it's not always that easy to interpret bone scans so they normally don't do them as a regular thing (especially not where I live) but only if things are playing up.
Terry- I think it depends on the level of pain you're experiencing - some of us mighty have a low level pain which we probably wouldn't use morphine patches for. I suppose that's where we are all different. My pain has varied over the past 3.5 years from extremely bad (when I had my fracture) to being able to live with a small amount of pain. Radiotherapy actually did wonders for the pain in the initial days.
Just another question and sorry if it has already been covered elsewhere, but when should I expect another bone scan, or does it just depend on the changes you notice yourself (hope this makes sense). My initial one at dx was in October.
It's so good being able to ask on here instead of having a very long list for the onc.
Bye for now, take care y'all
Love, Jen x
I have posted on behalf of Terry
I have real concern why any of you should be in pain at all. My wife ( we are in Spain ) has had Morphine patches since day one, when she fell and her coccyx was damaged. The pain was indescribable. The patches started at 50 mg and now she is on 100mg patches. They last 72 hours ad keep her virtually pain free. They are supposed to be non-addictive and have little or no side effects. We do not ever expect her to come off these patches but it makes life very livable, and most important for my wife, she can walk round the shops !!
Wow Girls, thank you for your replies.
It is so reassuring and helpful to hear of others' experiences. I will have a chat with Onc and we'll compare notes soon!!
Belinda - take it easy!!! Running??!!
Love Anne xx
My question for today is: I wonder why this nasty b*stard of disease attacks pelvic areas/spines the most????
Hi dawnhc..thanks for your posting..I actually thought of you at the time as I'd read here before that you get pain if you do too much some days. It's been a wake up call for me..(head in the sand) and I've been very tetchy with everyone around me so hope it gets better soon! But yes I'm going to be much more careful from now on. I came home and kept sticking a needle in my legs just to re-check them.
Sorry to hear you paid for your enjoyment Belinda! But that is just how it is - isnt it? On a good day you feel you can do anything but you pay for it later! When i had extreme pain - yes 10/10 and panic stations with hospital like get your GP out to assess and call ambulance - I thought like they did that i had a serious problem with my cervical spine. I didn't call the ambulance - much preferred to get someone to take me, but they xrayed straightaway and nothing seemed to have deteriorated. I had one sessions of rads a few years ago and they did say I could have another but the pain subsided and i said i would prefer to save it. I think the oncs seem to leave it very much up to the individual. It seems there are some circumstances as Kate has cited when the bone is in danger of disintegrating that rads is necessary.
Oh this is such a useful thread, especially about pain not necessarily being related to size of affected bone area. Also I'm clearer now about why radiotherapy sometimes isn't an answer to the bone-aches.
Ha Angee, henceforward my zometa will be referred to as bishbosh. I love it!
I have never had any pain at all from my spine and rib mets - I wouldn't even know they are there. But I did get a fair bit of pain from the met in my femur when it first appeared. Now it has had a dose of zometa (and tax, and avastin) it has completely settled, so I am glad I haven't rushed into rads.
Having said that, my friend who had mets to her sternum had rads and they cleared them up completely, never to return! I don't think the bishbosh will do that.
Hi Anne, I'm having hip, leg pain at the moment. From no pain to 10/10 on the pain scale.
I have a hip replacement but it's the other leg. I was in a silly mood last w/end, the sun was shining and I was out with the family walking and ran (only for a short time!) but 2 days later agony. So much so I went to hospital and had x-rays to rule out any fractures and needles stuck in me to rule out spinal cord compression.
No fractures and I felt all the needles so think my leg is a bit bashed and needs to recover.
It's bearable now but still painful. Are you changing treatment soon Anne? Things might improve with a treatment change. I'm taking Ibuprofen which has helped a little but not much, wonder if there's something more effective without resorting to prescription drugs?
I had 5 sessions of rads to kill off any stray bc cells when I had my hip replacement.
Belinda..x PS ..if I have pain like it again I'd definitely have rads if it was an option.
Dippykate, just to mention that I had my lumbar vertebra radiated upon diagnosis last October. The pain persisted and I was told that I could not have any more rads. I had an xray and MRi which showed a collapsed vertebra and then I went on to have vertebroplasty.
Sixpen, I know what you mean about having rads when pain is not at its worst as I have mets in cervical & thoracic (sp?) spine which ache when I have been standing too long and get overtired but feel the same as you and wonder if I should wait in case I have rads then it gets really bad but then if I have rads it might not get really bad. I'm going for bishbosh this week so will ask if I remember with all the other things I have to ask.
Sorry to hear that.
I had rads to my hip/pelvis because it was very unstable and it was in danger of dislocating/breaking. The zometa(biphosponate) and vineralbine had stopped the pain but they were concerned so I had 1 dose of rads then (nov 06). At the end of this year, I've had another dose to the same hip and one to my shoulder blade. I'm going next week for my vertebrae as I can't stand the pain any longer.
I would ask a nurse about this one on this site. I thought the idea of rads was to stop tumour growth but it can weaken a bone. The zometa has shown my bony mets have new bone growth which is good but they are still spreading.
I would have rads if the pain is bad but it also depends on what the scans show as sometimes the bony met can be big and causes no pain and other times it is small but the pain is great.
I knew when I had my hip first radiated, I could have 1 or 2 more doses. I'm not sure about my vertebrae and will ask on wed.
Sorry - probably not been much help
I feel exactly like you and can put up with the aching in my pelvic area and spine, it has improved since having Zometa infusions. I have been suffering a little more since the 3rd treatment, but my BCN says the cold weather might have something to do with it. I wonder if it could be a side effect of Arimidex kicking in.
I have got it into my head that the longer I can do without chemo/rads the better, so I will have to ask some questions at my next appointment.
I will be interested to hear what your onc has to say and we can then compare notes.
Love Jen x
I have spread to my pelvis, ribs and spine. My lower back feels the weakest and I often feel discomfort especially if I do too much !! My onc said I could have radiotherapy on that spot but felt I would be better off waiting until it is really really bad as it was a one off treatment. I tend to take Nurofen for a few days if it starts to play up and that normally takes the edge off it. My latest scan showed progression in my spine/pelvis so I was wondering if I should change from Pamidronate to something else ? A possible option maybe.................
I think you asked for an update re swopping details...........Moderator explained how to send a private message so details were exchanged that way.
I too had rads to the left hip/lumbar region straight after dx - my problem was that I had not been properly mobile for a month or so, due to being heavily pregnant, relying on crutches and then wheelchair (I did put on an awful lot of weight too). But as soon as I was allowed out of bed after the c-section, I could walk without any real pain but still used one crutch just in case. I often wonder if I jumped the gun by having rads when I really didnt need them but this was more or less forced on me and I was still in a state of shock.
I feel so pathetic sometimes but think that I will have a chat when I am there for bisphos iv. I need to nag them about my oophorectomy anyway!
Tricky one! I had rads to my most painful areas soon after bone mets dx particularly my hip and top of spine. But I would rate them 7/10 maybe. That degree of pain in my hip has never returned - but at that time I hadnt start bisphos treatment so it could be a combi of the two that has brought about the relief. But a year or so ago the top of my spine got very bad again and I could not have further rads. I would talk to your onc about it - explain that you dont think the pain is that bad so should you leave it in case it would be more beneficial later.
As the title says, I'm being thick and need some thoughts on my situation, please? Still got my L-plates on!!!
Dx with secondaries in Aug 07 - left hip/lumbar region with a spot on rib.
Had scans etc last month - spread to right hip (well, underneath - the part which would go numb if you had a numb-bum iykwim) also, a spot about 4" below nape of neck. Onc Reg asked me about pain - I answered, on a scale of 1-10, about 0.5!!! I got the feeling that she wanted to sort out some rads for me.
The next time that I saw her, she asked about pain again - no change!!
I have told Onc Reg not to worry and that I will speak out if I need anything for it.
Over the past few days, I would say that it has gone up to about 2/10 but more of an angry ache than actual pain, but not constant.
My mobility is not affected at the moment (touch wood!) - so, do I wait until my mobility is affected and the pain/ache gets a little worse?
Or, do you think that I would benefit now from rads (if that is what she has in mind)
I dont want to use my 'allowance' up before I need to iykwim.
Also, I've got a little voice telling me (this is where I am being really thick!), that if I have rads, then the growth may be restricted?????
All comments welcome please
I think that I am having a deifinite blonde moment!!! LOL
Anne aka Sixpen xx