Hi Girls - I am now on 3rd cycle of capecitabine. Tumour markers are stable for first time since met diagnosis and I will have scan next week which will hopefully confirm stable disease. Feeling fine but have noticed my fingers gertting dry and having trouble screwing the tops on tubes but small price to pay. Hope you are all keeping well and enjoying the sunshine this morning. Chris x x
Sorry to hear you have progression in your liver. I also have had that happen, after 5 years of 'only' bone mets, which Arimidex had held at bay. However, as I've said below, my receptor status has changed to HER+ from HER- so it's not surprising that the hormones stopped either working or being so effective. Good luck with this new treatment - I've not heard about this one before. I'm still on Capecitabine, after nearly a year, and will find out soon from a CT scan whether it still is doing it's job or if it's time to move to something else.
Hi, are you er- Kenni? What treatments have you had so far? Some chemotherapies are kinder if things are slower to change and quality of life is the most important factor. I usually stress I still want quantity over quality of life at the moment. But I always let my Onc know every time I have an appointment with him just so he knows this is still my priority. This way has reflected my treatment path and I've felt more in control of things. But some are more relaxed and happy for their Onc to decide their treatments. We are all different.I take the bisphosphonate tablets, they suit me but not everyone likes them as you have to stay upright, fast and only have tap water when taking them etc. If you are er+ hormonals can be very effective too over chemo. Do you want to be scanned or have tumour markers taken often or are you happier with scans if and when you feel they are needed. Good Luck..X
Hi Lyn, it's something I think I must have been told years ago at the hospital. I would think, I don't work in any medical field, it's due to there being the blood, brain barrier and there being only a few chemotherapies that can cross over to the brain. I understand it's like having rib bone mets doesn't mean you are anymore likely to develop lung mets. Also bone mets are often in the long bones but not often below elbow or knee. The cancer cells travel through blood and lymph and settle to new sites that way. If anyone is reading this and think I've got this wrong please shout out.
Do you mind if I ask you a question about the symptoms,if any, you had of sternum mets?.
I'm 3 years after WLE and the last 4 weeks have been getting sharp electric-type pains across the top of the chest wall above the breast and down into the sternum. I went to my GP yesterday as it hurts me to breathe,she suggested I had inflammation of the cartilage joints which hold the ribs and sternum together,
On another thread , Grumpy has said that regenerating nerves can be painful about 3 yrs after surgery, which is an interesting thought. I don't have any new lumps or bumps on examination.
Cheers; Best wishes to you all xxx
Hi again Kenni
I know that when we're anxious about our disease and its treatment, we can sometimes be confused about information. So I hope it's OK if I comment on what you said in your post, "Last time I have ECT for chemo without the F as my onc said it doesn't do anything to the cancer.".
FEC (5-FU, epirubicin, cyclophosphamide) is a combination of 3 chemotherapy drugs that is often given for primary bc. There is also the EC combination (without 5-FU), I had this in 2009-10 and it was effectve for me. There is another chemo drug, capecitabine, which is taken as tablets - the drug is converted to 5-FU in the body, particularly within cancer cells (amazing that the researchers have developed this one!) I did very well on capecitabine for two years. "ECT" is something else - not a cancer treatment!!
I do hope this is reassuring, and not confusing, for you. If you are puzzled, keep asking your oncologist or bc nurse, or ring the BCC helpline. All these professionals should be able to help those of us who have a lot of anxiety - or if English isn't our first language ... etc. And if it helps, keep posting to these forums. Many of us have experience that can help others.
Hi Kenni, I'm a real scaredy cat. Do you have a reason to think you may have bc to the spinal cord?
I had some rads last year because I had a bone met edging towards my spinal cord but my understanding is although most of those with bone mets tend to have spinal mets actual involvement to the spinal cord is quite rare. It's a little like having skull mets doesn't mean the bc is any more likely to spread to your brain than someone who also has bone mets but doesn't have skull mets.
I hope you don't have a long wait for your results. I don't think any of us find waiting for results easy, it's often called scanxiety on these forums.
Good Luck, we are a supportive bunch..xxx
Oh thank you Helen, I always like to tell a little bit of my time with bc so others know there are options and treatments to keep us well for longer than we might first think. I have just sent you a small private message.x
Chris good luck, I had 4 and a half years with this chemo. It was doable. I hope you also have a long time with it..x
Thank you for your support - have found the thread on Capecitopine and will be prepared next week. Hopefully it will be a breeze and will hit the spot! It is amazing that life has to go on as usual - packed lunches, washing housework etc etc but maybe thats what keeps us going. Love to you all. Chris x
I was diagnosed with bone mets in July following primary diagnosis in 2009. I was put on letrozole but my most recent scan now shows it has spread to my liver. I am due to start Xeloda next week. Am feeling so low, can't sleep and so want to live to see my 10 year old through school. Any advice out there on dealing with all of this and especially side effects of Xeloda? Chris x
Hi to all, I just wanted to say Hi. I was diagnosed stage 4 from the very beginning, ten years ago, 2003.
I have bone mets and some soft tissue mets. The last ten years I've had both hormonal and chemo treatments and bone strengthening (bisphosphonates) treatment. Some treatments have worked for years at a time. Arimidex worked for 3 and a half years, Capecitabine (Xeloda) worked for over 4 years.
I feel well and have enjoyed long periods of stability these last ten years. My Onc uses tumour markers to monitor how well a treatment's working along with scans. As one treatment starts to become less effective I'm started on another. I still have a number of treatments to try.
Kenni there wasn't anything you could have done to prevent your bc coming back. Unless you have a new primary your cancer hasn't come back it was always there, some micro met from your primary stayed from the very beginning and it's now made itself known. Whatever you might feel you could have done to prevent this it would not have made the slightest difference. Don't blame yourself in any way.
It's often thought if only we had done this or that we could have in some way have prevented breast cancer. I know so many healthy, vegan, vegetarians, sporty, slim women who breast fed and never drank alcohol in fact they ticked all the boxes to not get cancer and yet still they find themselves here. I ticked all the right boxes I've just mentioned to be highly unlikely at risk of breast cancer.
We all find our own way of moving forward after our diagnosis. It can take a long time to process all your thoughts and fears, it really does feel one step forwards and two back at times. But one day cancer will not be your first thought on waking. Good Luck to all. x
Hi Kenni and everyone,
I'm so sorry that you're going through this, the turmoil, the not sleeping and everything else. I understand what you're going through though because a couple of weeks ago I was diagnosed with mets in my liver and possibly bones too (blood test showed high levels for bone mets), following an initial BC diagnosis in 2011, chemo, mastectomy and rads. The bone scan results I havent had yet, although I expect the consultant has them. I will really have to chase him up but am hoping that "no news is good news" although our hospital is very lax about keeping patients informed from what I overheard in the chemo clinic this week.
I have currently had two doses of Taxol (I had Docetaxol and FEC in 2011) and am having Taxol weekly for 18 sessions. The dose is a bit weaker but already I am feeling washed out and knackered but I manage to pace myself through the day and only do what I can. Mentally I am finding it difficult to keep positive although reading the posts on this thread has made me realise that there are lots of different options out there. It's so encouraging to read how some of the ladies are doing.
I am older than you, 57 and my two sons are in their 20s although they are currently living at home. So we are three adults which helps to share the load and they are a great support.
It is interesting to read that the bone mets can be stabilised with injections (if I do have bone mets) because I have been anxious that I ought to be having another chemo potion alongside the Taxol and have been missing out. Injections seems a bit more manageable.
Sorry for rambling, Kenni, it's just that there's so much to say and ask and worry about, it all comes out in a huge rush.
I hope you can find a way of sleeping a bit more - it's so important to rest your mind and body.
Sending love and hugs your way xxxx
We all know how scary a secondary diagnosis is and no wonder you're not sleeping. I have had bone mets for 5 and a bit years and found out it had also gone to my liver earlier this year. There are various treatments that are used depending on what you've had before and whether you're hormone and/or HER positive. There really doesn't seem to be a set treatment for everyone but you can certainly ask your consultant why the particular one is chosen. Also you can get a second opinion, you are entitled to it and it will be free on the NHS. I had a second opinion back in Feb when I found out I had liver mets, I went to The Marsden and it did confirm I was getting the right treatment. My oncologist was understanding when I asked about it and organised it for me.
I am also on denosumab, the bone injection, and it is by far the easiest, quickest and (for me) least treatment for side effects than the previous intravenous and tablet form of bone strengtheners I've had over the past 5 years.
I think a lot of us found we could deal/cope with the situation once a treatment plan had been started as we feel something is being done. And there are many stories that have been told on here about great successes with treatments for secondaries so please bear that in mind when you are feeling so low. Local support groups can help and it sounds like you have a good BCN, unlike a lot of us! Come back on here for support as well as any questions you have, there's usually someone who will be able to share their experience.
Kenni and Annisjac
I too am a poor sleeper and always wake up lots of time in the night although I do manage to go back to sleep. Like Roxy12 I asked my GP for something to help and she gave me 14 Zoplicone - they can be addictive so I dont take them often but if I have had a really bad night or lots of things on my mind - e.g. scan results coming up then I will take one and get myself a good nights sleep - just knowing I have some in the bedside cabinet helps me. I have secondaries in bones - widespread so everywhere basically. I was diagnosed with primary and secondaries at the same time in April 2011 and at the time remember thinking I would not be around for my sons graduation the following year so as I am widowed I made arrangements with my best firend that she would go for me. I was on letrozole until recently then following some progression am now on ee combination and plan to be around for a long time yet. I think the first few months after diagnosis are the worse and then after treatments have started life becomes a little more normal although I dont think it can ever go back to how it was pre diagnosis but keep your spirits up and keep using this forum - it is a godsend and there are so many people with lots of experience and information always there to help. xx
Kenni and Anniejac,
I am a really poor sleeper not just because of the BC but just in general and all summer I have been waking around 3am and the only way I could go back to sleep was to go on the sofa. This helped but I don't know why. However I couldn't keep doing that so I asked the GP for something to help me sleep. He gave me 2 weeks of Zopiclone (3.5mg) but said he wanted them to last me 2 months! He didn't want me getting too used to them. I now take half of a Nytol and it really helps. You need your sleep to help your immune system and to give you strengh to fight the cancer. I definately feel much better for a good nights sleep and if I do wake at 3 or 4 am I manage to drift off again. XX PS I always manage to go to sleep when I go to bed. ( maybe this is the glass of red wine!)
I'm glad you have come on this site. I don't know where I would be if I didn't have the support of this forum. I was dx 2 years ago with lung mets, have since found that there have also been bone mets on my spine since Jan 2012 although these have remained unchanged and I do not have any symptoms.
I have not had any chemo as yet. I have been stable on Evorilmus and Exemestane since July 2012.
I can't advise you on the chemo but I would certainly ask your onc the next time you see him if he thinks this is the right approach since you have already had this chemo. There are plenty of treatments out there so don't think this is the end of the road! When I found out I had secondaries I took clothes to the charity shop and bought new bedding as I thought I would soon be in bed all day! Two years on I still go swimming and walking etc. AND shopping for new clothes!
Also sending you hugs!!!! Sheila xx
Thinking of you as you have had such devastating news.
I was diagnosed with secondaries in bones in 2006 (3 weeks after my primary diagnosis) and liver "mets" in 2009. I've had several different treatments (chemo and hormone therapy) and have just had stable scan/blood results. I hope this may encourage you and others living with this disease.
Weekly Taxol (paclitaxel) is a tough chemo but can be very effective. Do ask your medical team, maybe you had a different chemo drug, Taxotere (docetaxel) as part of your primary treatment?
Bone-strengthening drugs can be given as injection (denosumab), intravenously (often Zometa - this apparently has some anticancer activity too), or tablets, I've been on ibandronic acid tablets for years now.
It is good that you have a supportive husband - this forum is a great place for support too.