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Thumbie
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01-05-2012
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07-11-2013
10:18
Thanks for that, Smartie. It helps so much to hear what others have experienced. It has crossed my mind that it might be worth trying anastrozole again. I came off that at the end of treatment for my primary before there was any evidence of spread. So it could be that it was working well. Another question to ask next time! I have great trust in my oncologist, as he is extremely experienced. Unfortunately he is due to retire soon. A lot of people will feel a bit lost when that happens. Best of luck with your next chemo. Ruth xxx
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07-11-2013
09:23
Hi Chris and Helen, I was put on tamoxifen for 2 years, anastrozole for 3, after primary diagnosis. After secondary I had examestane which seemed to keep things stable for a while, then letrozole which worked for a few months and now I am back on tamoxifen. My tumour markers have always been in the hundreds since secondary diagnosis, but are now 1400. I had two opinions at my last appointment. The registrar said that the cancer is not responding to endocrine therapy and was all for putting me on capebeltine (?spelling). The the consultant saw me and said he wants me to continue a bit longer with tamoxifen. I am having a CT scan done to check for progression. My feeling is that if it shows progression into the organs (just in the bones so far) I may go onto chemo. The consultant is reluctant because he thinks my cancer is slow and he wants to hold off on the nasties to preserve my quality of life (he didn't say this but both my husband and myself felt it). I don't really know what to think just now. Chris, he said that tumour markers were a bit of a nuisance and I guess he meant that if your symptoms are controlled it's best to watch and wait rather than dash through all the options. Helen, if your tumour markers stay high there are several other hormone options which may work well for you. But it could be that they will stabilise on tamoxifen. My onc didn't seem to mind when mine were in the hundreds as long as they didn't leap up. I hope you don't get nasty side effects with the Zometa this time. Love Ruth x
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05-11-2013
02:14
Hi Lizcat, thanks for that information. The nerve root block procedure is new to me. I will mention it when I see the surgeon. I hope all is well with you. It has been very quiet on this thread. Lots of people are using the Facebook group, which is very supportive. The advantage of this forum, though, is that the discussions don't disappear down the page so quickly, and the discussions and topics have titles to help you find what you're looking for. So I am still visiting here a lot.
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04-11-2013
10:37
Thanks Belinda. I'm going to ask if physio might improve my muscle strength. My right thigh has noticeably lost muscle mass.
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03-11-2013
08:22
Hi everyone, this thread seems to have fewer visitors these days. As regards pain relief I have found my hospice at home nurse very knowledgable and approachable. She can prescribe drugs and is always at the end of the phone. If I tell people I have a hospice nurse they look uncomfortable, but it doesn't mean I'm in 'the last chance saloon' (my oncologists's expression). Being pain free makes life feel so much more positive and luckily I am staying virtually pain free at the moment. However, I would like to pick people's brains about spinal mets, of which I have a lot. The only one bothering me is at L4, because it is pressing on the root of the nerve that goes down my right leg. I have had radiotherapy to the area and it worked initially. I was pain free for several months. However, there has been progression now and further problems and I am having to take strong painkillers. I cannot have further radiotherapy. Does this mean I cannot have cyber knife treatment, which I have read be used in cases like this? Anyone know? When I had radiotherapy the other option was vertebroplasty, but the surgeon felt that radiotherapy was the way to go. He said I could have vertebroplasty at a later date. However, I have read that there can be wound healing problems if you have surgery at a previously irradiated site. Anyone know? I have had an MRI of the area and my oncologist reported that surgery was not recommended. He couldn't say anymore as he had the briefest of reports obtained over the phone. I wasn't really too satisfied so contacted the orthopaedic Macmillan nurse who has arranged for me to see the surgeon. I expect he'll just say the same. I'm happy to accept if there is good reason but would like to feel I have had a chance to discuss it fully. The pain is not so much of an issue as the weakness in my leg and the sense that things are going to get worse and start effecting my mobility more. I would love to hear from anyone who has had similar experiences and might be able to tell me more. Ruth xxx
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22-10-2013
08:50
Hi avaadora, I am sorry your mum has had this worrying diagnosis; it's a hard thing to deal with for the whole family. I have bone mets and have been living with them for 2 years now. Many others who contribute to these forums are living a good quality of life with a secondaries diagnosis. It's worth having a browse to read about people just getting on with things while having treatments. Of course we all know where it will end but meanwhile we try to make the most of what we have at the present moment. It's unpredictable and each person has a different story to tell of how the disease progresses, periods of stability, setbacks and successes of treatment (the successes are about keeping things stable for longer). It is impossible to say how your mum will get on but it sounds as if she is having the standard treatment designed to give her the best chances. There are several hormone treatment options. If the first one doesn't work well there are others down the line as well as chemo. I have not had chemo at this point but others on the forum are having chemo. Your mum may also need radiotherapy at some point. She may need pain relief, which is very effective. There is no need for her to be in a lot of pain at any time. My daughter is at uni and I know she would like to know what to do too! The best thing she can do for me is to get on with her life and be her lovely self. I wouldn't want her to drop everything or put her life on hold. We have talked and been sad together and I know she is there for me when I might need her for anything. At the moment I enjoy watching her going out into the world and love it when she is back here with us sharing times. Your mum is very lucky to have you in her corner. All the best Ruth x
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09-10-2013
08:38
Thanks for that Vicki. I have been doing weekly mindfulness meditation at 'Freshwinds' in Birmingham. I have found it amazingly helpful and would recommend this to anyone who has a chance to try it. Your trial course sounds much more elaborate but even the simple procedures I have followed have strengthened me every day. It's hard work, though! I think with our diagnosis we have time to mull over a)the life we've had and what we've done with it and b) the life we have left and what to with it. Mindfulness helps you to focus on the present moment rather than cogitate on what might have been or what will happen. It must be rare to be able to look back on the past and say, 'Je ne regrette rien', I know I can't do that, and it is the mistakes and unhappy memories that come to the fore, poisoning any chances for peace of mind. I've also found it helpful to consider the value of compassion, and have done this with the help of a counsellor. This is compassion towards oneself as well as towards others. We cannot change our past but we can look on past experiences through the light of compassion and understanding rather than through anger, blame and shame. This has helped me to let go of some of the complicated feelings. Again, not easy, but well worth it.
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06-10-2013
01:41
Lynn, your worries are completely understandable. Not so much imagination as just rehearsing the very worst scenario, really, while another part of the brain tries to keep it all in perspective. I hope your tummy is feeling better now. I had nasty diarrhoea on one occasion after my denosumab injection and still wonder if it was the injection or something I ate, or just a bug. As it hasn't happened again I tend to think it was just a one-off, whatever caused it. I hope yours was just a one-off too, but perhaps you should report it to the nurse next time you go for treatment. They may give you something to take in case it occurs again and they may be able to tell you if others have had a similar reaction. I have had scares about spinal compression as well, and incontinence is one of the symptoms, so if it isn't getting better call out the doctor. I have had to call people up because I was worried about spinal compression and every time they have said I was right to call even though, thank heavens, there has been no need for urgent action. Anyway, I hope you are feeling better now. All the best Ruth x
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04-10-2013
10:21
Hi 2Cat Lady, I'm also on tamoxifen after all these years. Last taken for my primary back in 2005, now back on it after letrozole and examestane stopped working. The doc thought it was worth giving tamoxifen another go. Is this similar to you? There is no evidence yet whether it is working or not. Hope it works for you. All the best Ruth
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04-10-2013
08:47
At the Haven in Hereford you can get 10 sessions of complementary therapy free of charge after an initial assessment. They run introduction days where you can find out about what they offer (typically some group sessions such as tai chi and some one to one such as shiatsu). You may not need to go all the way to Hereford for the introduction day, they sometimes do those in Birmingham. Information on their website. You could also ask about Freshwinds Centre for Integrative Medicine, which is based in Selly Oak. They offer support for people with chronic, life-limiting and life-threatening illness. Again an initial assessment and various complementary therapies. I think you might need a referral from your doctor or BCN for that one. It's all free.
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21-09-2013
01:40
I went to the Haven in Hereford recently - a wonderful place of peace, nurture and solidarity.
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19-09-2013
04:45
Yes, Val, I hope you have a good, refreshing break in France. I'm off on holiday to Somerset next week, Barcelona will have to wait haha (meant to go there until my leg started playing up). I've had a MRI of my spine to check there was no spinal compression due to spinal mets. There isn't - phew. The tumour on L4 vertebra (which has already been zapped with rads) is putting pressure on the nerve going down my right leg and causing the weakness and tingling I have had. I don't know if it's also responsible for increased pain in my right hip/buttock. I'm really impressed that the Macmillan nurse gave me a summary of the result over the phone to help me relax and enjoy my holiday. I'll find out more (treatment options) in October. Love to all. Ruth
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15-09-2013
10:32
Hi vercors, the reason I was given was that it was a new drug which had had good results and many patients were being switched to it.
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13-09-2013
09:53
Hi Danica, I have been having denosumab for over 6 months. Previously I had pamidronate which is a similar drug to Zometa ( I have had low dose zometa when on a research trial a few years ago). While I have been on denosumab scans have shown that there is some healing in my spine. So I am very pleased with it!
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11-09-2013
12:05
So sorry you have had this diagnosis. There is an excellent thread on here for people with bone mets called 'Bone mets - please join in'. The most recent posts are at: http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/td-p/477048?page=165 You will also find it if you go to 'I have secondary breast cancer' and click 'Living with secondary breast cancer'. The thread is usually near the top of the list there. I have bone mets in hip and spine but unlike you no breast cancer gene. In my experience treatment usually involves hormone treatment if the tumour is oestrogen receptive (one tablet per day of tamoxifen or an aromatase inhibitor eg exemestane, anastrozole or letrozole- this depends on whether or not you are post-menopausal). Alongside this it is usual to have a bone strengthening drug such as pamidronate (a bisphosphonate) or denosumab either in tablet form or an injection or infusion. If there is bone damage and pain radiotherapy is sometimes used, or, if necessary, surgery. Obviously I don't know if this is the treatment that you will be offered in your soecific circumstances, but it does seem a common course of action. Best of luck with your treatment, whatever is recommended. Ruth
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08-09-2013
08:01
Good grief, Ponsmuir, you have been through it. What an inspiring story! I am so pleased you have had such good results from treatment.
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06-09-2013
05:10
Birgit, I have had 1 short courses of radiotherapy to my hip, after my hip replacement and then later on a one off treatment when there was some progression further up my hip. This second treatment was primarily to relieve pain. I didn't have any of the unpleasant side effects I was warned about on either occasion. These are: diarrhoea because the intestines can get in the way (can carry on for a few weeks), tiredness, and the usual skin problems (the skin can get red and sore). I was also told that the pain could get worse before better. I did experience this from my one off and had to go onto morphine for a while. Just when I thought there would be no improvement there was - over a month after the treatment the pain subsided and I was able to give up painkillers altogether - very pleasing! There can be some late effects from radiotherapy such as weakness or pain at a later date. You could ask about that, I don't think it is common. Good luck. Ruth
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05-09-2013
10:31
Easter Bunny, that's a nasty bit of news. I hope they get a treatment sorted soon. Belinda, thanks for your good wishes. I saw the oncologist yesterday and he attacked me with sharps and hammers to check my nerve function. 🙂 he thinks that a tumour on a lumbar vertebra may be pressing on a nerve. He has changed my hormone treatment from letrozole to tamoxifen which I only had for two years after initial diagnosis. I can't help feeling, in darker moments, that this means the options are running out. However, he assured me that there is "a lot of life left in the tamoxifen option". Fingers firmly crossed. Is there a Facebook page for bone mets folk? How can I find it?
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03-09-2013
03:54
Oops, that should have been weakness in RIGHT leg going downstairs! Update: could be spinal compression but does not need immediate treatment; the warning is to watch out for much greater weakness and any incontinence or inability to wee. Could be due to radiotherapy after effects which can kick in months or years after the treatment and involve nerve damage. An MRI in the next few weeks should show in greater detail what's going on.
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03-09-2013
09:54
Hi, best wishes to all. I'm just getting my head around this new forum. I wish I could see all the previous posts when replying, I'm sure that used to be the case. Oh well.... Just to pick your brains: I'm scaring myself with worries about spinal compression. I have had a bit of buzzy nerve sensation down my right leg on and off since having a hip replacement nearly 2 years ago, and have had radiotherapy to consolidate L4 vertebra because it was collapsing. Recent scans were good - signs of some healing in the spine. However, in last couple of weeks have experienced more intense tingling in right shin, increased hip pain and a bit of weakness when I rely on left leg going downstairs etc. Having said that I am still mobile and continent! I have been in touch with my orthopaedic Macmillan nurse and they will see me today. I really think I might be wasting their time, but I can't know for sure. Has anyone been in a similar situation? Love to all, and hope treatments are going well, Ruth
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