I was dx with a met to the spine in June 2009 and had rads and changed from Arimdex to Extremane. Since then two more mets in the spine and one in the rib. The last time I saw my oncologist she said it was stable disease.
I have been offered no treatments apart from the first rads on L1, and pain killers.
My question is if its stable, then why do I have more Mets?
I have been having bad headaches and have booked an appointment for 4th Feb. I want to ask the right questions, but don’t want to push the oncologist to give me drugs if I don’t really need them yet.
L1 area is painful again, collerbone is aching. I feel a bit abandoned and don’t really know what questions to ask. I don’t want chemo if I don’t need it or the bone infusions but I don’t understand being called stable when more mets are appearing.
I seem to remember something about some bone mets being undetected until they actually start to heal. It was reputable research but my brain is addled!!
Oncs commonly advise people that it is not uncommon for new areas to show up once treatment has started, as healing bone can resemble bone mets.
From what I have been told I have mets in L1, T12 and T10 and more recently a rib met. Some damage to the lower part of the L1 area.
I do find it all very confusing. When treatment has started, would you say the Extremene hormone was the treatment? The rads I had on L1 was for pain control and it worked for a while.
The more I think about it the more I become confused. The answer probably is to try not to think about it.
Thank you Julie, that is what I would think too. Seeing as I have more mets since that was said I can’t think how it can be described as stable.
This is what is confusing me and also concerning me, as I have only the hormone treatment. If more mets are appearing that would say to me that hormone treatment is not working for me.
I know I have more mets, since my last scan. Same pain, just different side and area. I am concerned I am not being pro active enough in my treatment but when your told “don’t worry, its stable” it shuts you up.
More mets since dx Daffy doesnt sound stable to me. In your place I would be asking why you are not being given bisphosphonates. I have been on them since 2002 and it kept mine stable for 7 years, it is only this last year that there is a possibility that there may be progression. There is some thinking now that being on bisphosphonates can even have a prophilactic effect in that it may prevent bone mets developing. Questions to be asked I think next time you see your onc. There are some forms of bisphosphonates that come in tablet form - that way you wont have to visit hospital for infusion every month.
Thank you so much both of you. Even though its made me cry.(with relief) I know I am right but keep getting pushed back by my BCN who up until being diagnosed with bone mets has been my biggest support.
I feel trivilised everytime I speak to anyone. I haven’t seen my consultant as she has been away and will see her this coming Thursday.
When the rib met was found before christmas, my BCN was saying its probably not, you have probably had an injury there. The Reg said no, I think it is a met and he would speak to the consultant about rad treatment for it as it was giving a lot of pain. Haven’t heard anything.
I have had terrible headaches since 8th Jan, had see a independant doctor about an accident I had two years ago, nothing cancer related, she told me she was concered about brain mets and would seek further investigation.
I told my breast nurse and she said, no, you would be having fits or be very unwell. I know from on here that some people do not have symptoms.
When I asked about the bone biosphates, the Reg said that one has to be aware the side effects to the kidneys and moved on.
I have no support as my family have suffered too much with losses from cancer (also three of us where dx with bc in the same month) and feel so lost without my breast nurse, who before I took everything she said as gospel but now think maybe I was just hearing what I wanted to hear.
Sorry, went into a bit of a rant. Tired of it all.
Sorry to hear you’re feeling like this. Have you spoken to anyone on the helpline here? If not, it might be worth your while giving them a ring and having a chat, they’re here to support you through this. Lines to the helpline open again on Monday morning (M-F 9-5 and Sat 9-2) calls are free, 0808 800 6000
I have bone metz, too. Had chemo for 6 months, 4 of which was with zometa infusion. I’m currently continuing with zometa and chemo is replaced with tamoxifen.
At my initial dx, they found 2 places in my bone. But my onc said if it’s not plainful, it’s nothing to worry about. (that’s why I wasn’t on zometa for the first 2 months.) At my last scan at the end of chemo, they found 5 places in my bone!!! However, the lump was a lot smaller than before. I was very confused as well why there are more areas. I was told by my onc that healing bone is similar to bone mets, so he’d rather belief that it’s healing bone and it’s to be considered as a good sign!!! He also gave lots of praise to the role of zometa played in this. (ya, maybe he’s right. I had a terrible reaction to it for the first 2 months and nearly gave up on it.)
My onc has also rejected lots of suggestions mum + I found out via the Internet. Of course, they are the professional and they think they know what they are talking about:)
Thanks, I find it interesting when ladies talk about chemo for bone metz as my consultant told me at diagnois that there wasn’t chemo for bone metz and said that they would change from Arimdex to Extremena (had been on Tamxofin for 3 and half year before the Arimdex) and patch me up with rads when needed.
Then I came on here and read that people are on chemo/bisophates and seem to have good results.
Hopefully, you will see continued improvement, best wishes.
I’m going to write a few questions down for this week and I really need them to be answered clearly before I leave the clinic. They know well enough by now to know that I prefer information even if its not good news.
Thanks Jo, I will maybe ring the helpline when its open.
I was diagnosed July 07 with stage 3,grade 3 bc, had 8 x chemo, then mx and anc, then rads. At my post-surgery checkup in Jan 08, it was found that the bone scan done in Aug 07 showed ‘extensive widespread bone mets’ in T9, L4&5, sternum, ribs. Another scan was immediately ordered and showed signs of improvement, obviously from the chemo. I went on tamoxifen, had another scan July 08 which was the same as the previous one, and then had to go on zoladex and arimidex as the tamox was awful. I started with zometa (iv bisphosphonate) at the same time. The next scan wasn’t until June 09 and whilst it showed some slight improvement, a new ‘suspicious’ area had appeared on my ribs on the mx side. My onc wasn’t unduly concerned and said it could be rads damage even after a length of time and it was possible for one area to improve whilst a new area could appear. I was slightly alarmed but continued on treatment and had another scan in Dec. This was identical to the one in June so shows things as being stable. My onc was pleased and said my bones look good and I go back in March for a 3 month check and then plan my next scan.
I have the feeling the onc started me on zometa earlier rather than later and that’s fine by me. I’ve never had rads to my spine and ribs as they’re not giving me any pain, just a bit achy if I sit or stand too long. The rads and chemo are being kept in reserve for a later date.
Sorry to have waffled, but that’s my basic story. I hope you get sorted with everything very soon - oh and re the zometa effect on kidneys, that’s monitored with 3 monthly blood tests and drinking more water (still rubbish with that!)
Hi Liz, your story is most welcome. I have spoken to you before, I remember when I joined, I was in a panic about the pain in my sternurm and ribs. I was very grateful then when you spoke to me.
When I was told about my single L1 met in June 2009 the onc said I would be having an infusion before the rads on the same day. It wasn’t written up and I questioned it after the rads and my BCN said she would look into it. Had two scans since then, showing the other mets, the last scan being 18 Dec 2009 - haven’t seen my consultant since June, seen her Reg twice. He was the one thas said that biso’s had the bad side effects.
I am starting to wonder if there has been a mix up and will ask all this on Thursday. I have now on the left side ribs the same pain and my collar bone on the left side. Same pain, same pressure as when the right rib met appeared, so think that there is more to be found yet.
I didn’t have any pain with the T12 and T10 at all, now though if I cough or sneeze then its a terrible pain in that area. I had 3 months of disabling siatica, I told my breast nurse but I wasn’t really concerned as it felt so much like siatica, it started to clear up and the Met to L1 was spotted on a CT scan for my thorax area. The damaged end of the L1 disc was triggering the siatic nerves. Had one rad and the pain went but has returned in the last month.
This to me doesn’t make me feel confident that things are stable.
Sorry about the long posts but I must have been bottling it all up, as its all pouring out now!
Thank you once again, fingers crossed for your appointment in March.
Hello Paula…and everyone…I have bone mets and this was diagnosed about 11 years ago. I had mastectomy 21 years ago. Since 2000 I have been on various hormone tablets including the ones you are on Paula…but just recently changed to Femara ( also called Letrozole).
I have had infusions of Biphosphones for 11 years too, I started with Pamidronate, then Zolodronate but now I am on the tablet form which is called Bondronate and means I do not need to go to the hospital every month for the infusion. But you do need to take it first thing evry morning after fasting and remain upright for an hour…so interferes with day to day living.
I have bone mets in my spine, ribs, thorax and pelvis. Each bone scan I have had over these years has shown that some areas of bone mets have improved while other areas have become worse. But really I suppose you could call my illness stable.
I am on several different painkillers including morphine, plus painkillers for nerve pain and to help relieve the pain at night down my leg…sciatica.
I have recently finished an 8 month period of chemo called Capacitabine which is given in tablet form. I have been on it before and had a long gap when I was not on this chemo. But each time I had the chemo it has definately helped with my bone mets as shown in my tumour markers in my blood tests. In fact the first time I had this chemo it reduced the markers by half ( I don’t think everyone has these markers but it is useful to monitor the chemo each month).
I am sorry this is a lot of information to take in Paula but what I am trying to say is that I am on all sorts of things to help keep me stable with bone mets. I also had radiotherapy on the odd occassion to help with spine and rib pain but more of an short blast of radiotherapy not weeks of it. It certainly has allowed me to have a reasonable life. A bit at a slower pace and it does make me tired. If you have any questins please just ask. Love Val
Thanks Val, I always read your posts as they make me feel so much better. I know its not been easy for you but 11 years with mets, it gives me a lot of hope. I know from reading responses on here it helps others too.
One thing I am not short of is pain medication. Oramorph, amytrippline and other stuff. Thankfully haven’t had to take them yet. Used Tramodal for the really bad headaches I have been having which didn’t really help my head but helped my back!
That sciatica is a awful thing, its the one that will keep me awake at night, trying to move my leg about to get it comfy.
Maybe I am stable then, I do think I need to ask lots of questions. I do like my onc very much, she is straight to the point but caring. Hopefully I will understand a bit more after the 4th.
I don’t think I can slow down anymore I would come to a complete standstill, never regained stamina after treatment. I just muddle through the days looking after my three boys, that is about all I do.
Not complaining though, pleased that I am here to be able to do that.
Hi again Paula, Can I ask you why you don’t take your pain relief? I take one amitrip every night before bed and it just makes life so much more comfortable. I sleep better and you get used to it so there are no side effects for me now. I also have Oramorph but that sits in the fridge and I haven’t needed any for a long long time now. Gabapentin is wonderful tablet for nerve pain. I was sent to a pain specialist doctor at our hospital and she sorted out all my meds last April and I haven’t looked back since. Perhaps your pain in your leg at night is not too bad for you but the medicine made a huge difference to make me more comfortable. I also have other back up stuff but have not needed them recently since last chemo ( TENS machine and patches for pain).
Thank you for your kind words re helping other have some hope. It pleases me so much that you feel like this. So (blushing) thank you. PM me when you have seen your doctor. I am trying to spend less time on the forum as I seem to get more and more caught up in it. Keep well. Love Val
I will let you know Val. Re - the pain meds, now my pain is sporadic I tend not to take as much. I have other health problems, hiatus hernia, damage from acid refux, swallowing pills isn’t easy. So I tend to stick with Co-codmal and sometimes Tramodal as they both come in soluble form. I am taking lots of pills at them moments, as I had a missed DVT in my leg which led to PE’s in lung, so pills for that, blood pressure, stomach pills.
If the pain from the sciatic nerve was constant like it was at the start then I would take the amptripplyne. Sometimes it doesn’t start until I get into bed, and getting out is difficult as my back doesn’t obey my commends half the time, so tend to wait it out.
I very nearly took the Oramorph for my headache when it was at its worse but my BCN put me off it by saying it would make me sick, then she said the Tramdol would make me whoozy… I plumped for whoozy but in fact it didn’t make me feel bad at all.
I did remember we had ‘spoken’ before but couldn’t recall exactly what it was about - chemo brain has a lot to answer for!!
Re your reflux problems - I was told that the bisphosphonates can irritate the gullet etc but when the onc looked the different sorts out, the iv zometa apparently can cause less problems than the oral tablet forms. I’d never had reflux/heartburn but got it with chemo and have had it ever since (not badly though). The zometa has made it a bit worse but it comes and goes and I take slippery elm tablets when needed. I would rather have the zometa and something for the reflux than miss out on the benefits of the drip but then as I said my reflux isn’t bad really - just another inconvenient bc side effect!
My onc and bcn have both told me that bone mets can be very unpredictable and a mix of things so it is possible for some areas to improve/remain stable while a new area can appear - the bcn described it as being like tweed and a mixture of wools. So I just think of mine as being stable until I need a major change in treatment due to a bigger spread. That’s how I cope with it anyway.
Just to echo what Paula has said about your posts being encouraging for others - they are and your replies are always articulate and to the point without being frightening.
The answer probably is to try not to think about it.