Thanks Jackie I feel a bit better today but still can't bend down without being short of breath. Katie I've just read your post on another thread it seems yo are having the same problem then. Its really frightening isn't it because without your lungs working it makes everything else so hard. I've been getting frustrated because I had just started to get back in to my gardening but over the last 3 weeks Iam really struggling. I've got a scan tomorrow you've got one next week havn't you?
Sorry to hear that you are having breathing problems, I have been panicing that the fluid is coming back and am due a scan next week. I was told by my oncologist that he had only ever had one person where the fluid had returned after a pleurodisis. Good luck with your scan, hope all is well
Sounds like a few people are struggling with things at the moment - sending supportive hugs out to you.
Beli and Kay, sounds like you've been getting your money's worth at the hospitals recently! - it's such a drag and takes up so much time out of your available time/energy. Sometimes feels like there's none left for anything else.
Kay your TV scan sounds a bit unpleasant - just the name sounds ugly and uncomfortable! But it will be really good if they can sort out your bleeding. Your insurance company sound so ignorant and short-sighted. I think Cathy's right about mentioning how much it will cost them to remove and then replace it - money's probably the only argument they'll listen to.
Tracy - I just sent you an email before I came on here. I'm so sorry to hear you're feeling worse, but glad you've got some stronger tablets. I think anti-depressants are wonderful things, and it's well worth taking them if they can 'prop' you up for a while and help you re-engage with life. Is your GP understanding? I agree birthdays and anniversaries are blooming painful affairs. I don't know anything about tumour markers as my Onc won't really discuss them.
Beli - sounds like you managed to do the right thing and nip your bad day in the bud. The zoo sounds great - sometimes a day like that full of idiotic laughter is just what you need. Which zoo did you go to?
Will be thinking of you and Kay on Friday.
Caroline - what can I say? You must be so worried about your lungs. No wonder you got snappy. And your hubby needing an op just adds to the worry. Getting overtired doesn't help, but it's so easily done. I get frustrated if I have to cut down on what I'm doing, so then I overdo it and get miserable/grumpy. But we have to grab opportunities to go out and do things. We've had a huge Fun Day at our church today, so I've been doing face painting all day except when the kids Gospel Choir I help to run were performing. Yesterday I spent hours at rehearsals, tomorrow it's work in the morning then the Cinderella Tea. I know I'll be seriously shattered after all that! But I love doing it all, and I'd be miserable if I sat at home while these things were happening, and I wasn't a part of them. The kids were brilliant - singing their little hearts out.
Anyway Caroline, all the best for Wednesday. Hoping it's good news for you.
Big love to everyone,
I am so fed up today I hope you don't mind me moaning. We've had a very busy weekend with village fete yesterday and out with the kids today. Came back in this evening and started shouting and getting really cross with everyone and then ended up crying my eyes out. I think it is just because I am so tired today. Also I am having trouble with my breathing again and have started coughing again. Having CT scan Wed to check if fluid has come back in my lungs. I am so worried that I am going to end up back in hospital again to have the fluid drained out. I was in hospital last June with breathing problems. The trouble is now I have started to think is this it now have I had my year and am I going to get worse now. I'm sorry to sound so miserable but I had to get it off my chest. Also my hubby goes in to hospital 22nd to have his thyroid removed so I don't want to end up in hospital the same time as him.
I'm sure I'll feel better tomorrow when I've had some sleep.
Sorry to hear your feeling down, although I do know how you feel, I couldn't sleep Sat night (husband snoring very loudly) and mind started wandering to all the bad things and I felt really down yesterday, I told the whole family beware I wasn't having a good day, so we all went to the zoo had a fantastic day completely shattered mind you but we laughed and so many things I cam home smiling.
Cathy is right my tumour markers vary in the 40s if they go up slightly they always assure me thats fine along as they go increase all the time.
Kay I hope your results are positive, I am having a CT on Friday please send positive vibes my way and I will sending mine your way. Insurance companies are just unbelievable you cannot guarantee anything with them, lets hope the nurse can find the info she needs.
Hope you enjoy the rest of the weekend.
Love Beli x
just saw your note on the insurance company - i keep getting pushback fom the insurance company and then have to keep reminding them I am covered...haven't had this one as they are flushing the port when i have the zometa. I tried to get district nurse to do this and they refused, but it does sound like yours might take you on. I wonder if it would be worth asking your gp for a referral to local hospital just to cover this ? at the same time you could write very strongly worded letter about how much it would cost to have port taken out (which they would cover !).. let me know how you get on, these things are a worry.
have a great weekend
Would just like to say; I got full instructions from my hospital on flushing my Hickman line (not the same as a port, I know) so that I could get the nurses at my GP to do it instead of going into hospital each time. They managed to do it - and were quite chuffed with themselves as a result. As I knew far more about the process than they did, I had to point out things like wearing sterile gloves at all times (was paranoid about infection) but all in all it was more convenient than going to hospital every week or two and I hope this may be an option for you too.
Sorry to hear you are finding things so difficult, Tracy. As Cathy says, hang on in there and I too think "special" days are often really difficult. I did even before bc - something about how you are expected to just be happy on a particular day almost "to order" - but even more so now. Really hope the new anti-dep will help.
The continual trips to the hospital take up so much time and energy don't they? I seem to have lived there or at the GPs recently. Have just started a new thread about "transvaginal scans" as I had my CT scan yesterday, and got home from work today to find an answerphone message saying the onc wants me to have one of these. Trying desperately to think that it isn't because he has been alerted to something from the CT scan but because he had a letter from my GP about his concerns about me still bleeding 2 1/2 months after starting Megace. Not due to get my CT results until next Friday which suddenly seems a very long way away.
Also having problems with the insurance co who are now refusing to pay for my port to be flushed (cos it's "maintenance"), and I really don't want to have it taken out, only to be put back in when I need chemo again. And none of the district nurses are trained to flush it. Did "leave" it though with a very helpful district nurse who is going to find out what training she would have to do etc etc and has promised to get back to me next week about it.
Anyway, planning to have a good weekend provided the weather lets me! Hope you all have at least one indulgent thing planned.
Love Kay xx
Tracy - hang in there - I am not going to say get a grip- just hang in there, yesterday I went for zometa and I was going to ask my counts but didn't as In the end didnt want to hear it, I know they will tell me when it all gos pear shaped again. It really doesnt matter that its gone up 14 points, so the nurse is right in one sense, its where it gos from there. Wasnt wrighty saying rhat she had stabilised in the 40s? But its the awful uncertainty isnt it - what happnes next.
As to being depressed on your birthday - totally understand- its these "special" days that are hardest. My son is really disabled and every year I find his birthday a challenge as it really reminds you of time passing and his problems - this year I really dont know how I will cope (although it may be tempting fate to say I will be here for it).
I hope that your GP was understanding and has really thought about what to give you. Are there any cancer support centres out there? funnily I found the counselling a tiny bit helpful, but when I went for a day where someone advised me on hair and makeup etc, I felt much better and the effects were longer lasting, even now I get the odd compliment on new makeup ect and it really cheers me up!
it would be great if you lived closer - I find these meetings reallly helpful as well
hi have been to see my gp and have some stronger anti dep as i got even more depressed on my birthday and cried the whole day .
went for my bone strenghtner on wed and script for xeloda and my GGT has gone up 14 points , nurse said nothing to worry about but i cant help it . has this happened to anyone ?
dont want to sound miserable again but i cant get to grips with myself ....
wish i lived nearer to meet more often xx
Hope you results are ok. Working as well you are marvellous. Last week I was hospitalized out, Monday Blood Test, Wednesday pick up Xeloda asked for a week off as my feet have been bad and hands, Friday Zometa and then this Monday went to see the cons about my eye watering all the time at least I don't have to see anybody else for three weeks.
Cathy You are amazing as well to keep working, I think if you feel is keeps your mind off things that go with it but also try to take some time out for yourself.
Jacquie & Tracy hope you are both ok and Tracy I hope you feel more positive.
Love Beli x
Meant to post last night but it got wiped out and then to much going on to recreate it, so now will do it before running off to work.
Jacquie- you really write quite eloquently I saw one of your posts on "our" old thread , i know what you mean about not really being sure how to live, I keep asking myself- am i doing this right, should I be chargeing around to work? Are there other things that I should be doing in this strange limbo?
Kay hope scan and appointments go well and port flush too! I am due tomorrow for blood test and port flush and zometa, insurance company is playing up and making mistakes about whether it is covered again...what a pain,
Caroline and Allicat - hope you are doing ok, pretty damn insensitive comments from your onc reg,you would think they could make the small leap of imagination to understand how things sound. I often feel like they see so many patients they treat us like numbers. I can understand that, but I think they need to try a bit harder,
So off to deal with the children at work, have to go in and mother them now to be sure they are doing their jobs.
love to all
Blood tests (and port flush) tomorrow, and scans on Thursday - last Friday was my "stress" workshop! And I see the onc next Friday (9th) to get the results. AND I've got yet another appointment with the GP tomorrow to decide whether anything should be done about my bleeding. No wonder I don't seem to have much time to spare for anything else, by the time I've been to work 4 days as well! Still, keeps me busy and out of mischief.......
Love to all
Oh, and Kay, I meant to ask how you're doing so far this week? I can't remember which days were scans and which were results - something was on friday, yes? Sorry to be so hopeless.
How is everyone today?
Carolina - I answered on the other liver secondaries thread about swimming. I carried on swimming throughout chemo. The nurses said it wasn't a good idea, but my onc said there was no problem so long as it was a fairly clean, well-maintained pool. I wore a swim hat, then when I got dry and left I felt everyone was wondering how I got my hair (wig) dry and coiffed so quickly! I still swim weekly now, with my portacath. I was scared the first time I went under water with it - thought I might take in water and drown!
Hi Allicat, I agree with the others. Once you have secondaries, it's as though the 'cat is out of the bag' and it's not worth removing the tumours. The treatments are aimed at killing off, or keeping stable, every little cancer cell wherever in your body. I know it seems weird, leaving it there. Logic says you want to get it out, so it can't do any more damage. I've talked to my onc about my liver tumour, and there is a school of thought that if you operate you can somehow make the tumour spread more than if you leave it alone. I am sorry your onc was so insensitive about your scan result. It's not really good enough is it? I guess if you haven't been there, you can't possibly imagine the kind of terror that grips you when you're expecting results.
I'm glad you've found your way on here. Keep asking and talking all you like.
Tracy, I'm not surprised you were knackered! I'm still tired and I only had a short journey. It was great that you could come over and meet us in person.
Love to everyone.
Hello I was diagnosed March 2007 with secondaries straight off. I havn't had surgery was told surgery not an option. I have it in lungs,lymph nodes,liver. I found this really hard to deal with at the start because I wanted someone just to cut out the bad bits. Have had 6 fec which has shrunk some of the tumours and I am now on Zoladex and Arimdex
I have not had surgery either. The reason they do surgery is to get rid of any cancer in the breast before it has a chance to spread and once it has spread, there is no point in doing the surgery. I know quite a few women with secondaries who have not had surgery.
My wife too has not been offered any surgery, she has liver, lung and bone mets. Too many in the liver to do anything with and the lung one dissapeared after Xeloda.
The bone mets are not worrying the doctors, just the liver mets as her tumor markers had started to rise whilst on Femara, I am hoping that the FEC will work as the Taxoter/Xeloda only held it back and did not shrink anything.
I haven't had surgery after being diagnosed with secondaries, I was told re mine in the liver, bones and nodes that surgery was not an option.
I know what you mean about your hopes being raised, every time I go for results they say its good news and all they mean is that the tumours are stable, which of course it good I just want to hear the same as you that the liver is clear.. The good thing is the liver can work normally even with tumours
Try and keep positive I know its difficult but at least the tumour has shrunk which is brilliant news.
I went to see Onc Reg because of a problem with my arm and while I was there she asked me if I wanted to know results of MRI scan that I had a couple of days earlier.I said no,because I just wanted to get my arm sorted that day.As I was leaving she smiled and said it was good news about my scan anyway, which I took to mean that my liver was all clear.When I went for Chemo last Thursday she said I do have a tumour on my liver but the' good news' is that it has shrunk.I really wasn't expecting this and I am very angry at her choice of words.She shouldn't have got my hopes up like that! I have cancer in breast,lymph glands under arm/neck.
My Onc told me I will be on Herc indefinitely but I don't know what will be happening after my last Chemo has finished.She also said there is nothing they can do for my breast/lymph glands but maybe have rads on neck as they don't do surgery there.Has anyone else not had surgery after being diagnosed with secondaries?
I'm very confused,scared and angry as they just seem very vague with the information.
Really lovely meeting you both as well - and seeing Cathy, Jacquie and Dawn again. Such a shame that Allie wasn't there. Not surprised you were so tired, Tracy - it was such a long day for you and think we were all tired despite our days being much shorter and easier. Did you manage to get your t-shirts?
Jacquie and I had a brief visit to Tate Modern, having crossed the Millenium Bridge - 2 things on my "to do"list which I can now cross off. Can't quite believe I live so close to London and hadn't "done" them before.
Anyway, hope everyone enjoyed the sunshine yesterday and has had a lovely weekend.
Lots of love
Lovely to meet all you lovely ladies, couldn't believe the time it went so quickly.I certainly slept well as have definitely got out of the habit of traveling especially in London.
Love Beli x
hi there , so lovely to meet you all yesterday , i wish i lived nearer to meet monthly or so just for coffee , you all are very special and look wonderfull .
well seemed to take ages to get back , walked around a while then back to blackfriars .took the train which was SO full got off at gatwick and the walk and the security checks went on and on and on .by the time i got on the plane (and bashed my knee really hard on the seat in front ) i was soooooooo tired . went to sleep the quickest i have in ages and before phil!!
got up this morning took charlotte to school and went back to sleep for 5 HOURS !!!!! can you believe that !
i hope everyone else got back ok , loved the photos , i did cringe a bit jacquie , lol i hate my pic taken .
thanks again for the meeting , it really helps to be with friends who " know "
Hi, I have also posted on the "anyone with liver secondaries?" thread. I was really pleased to find lots of you who are keen on walking and running. I am in Dubai and so it is getting a bit hot to run now but I am walking in the cooler evenings, 3.4kms. I cannot run, my muscles have just gone since I was dx end of March and had 2 stays in hospital with febrile neutropinia. I cannot believe it was only March 16th I did the Bath half marathon in 2 1/2 hours!
I am about to lose my hair after chemo #2 next week and so will have to find something to wear when I go out for my walks. I really miss lap swimming too. Isn't it so disappointing when we try and try to keep ourselves so fit and active and this spiteful disease still gets us? I am looking forward to getting some strength back so I can do a bit more. It really does help with feeling positive and elevating mood. Must be the endorphins!
Wish I could have joined you all in 24th. Sounds like you girls know how to have a good time despite everything. Way to go!
Sadly I will not be able to make it on Thursday - just a bit difficult to arrange at this late stage as I only joined up last week.
I have now been on capectabine (xeloda) for 10 days and overall having a good time with it. Yesterday I walked six miles and was so pleased to get back to doing some outdoor exercise. I am wary that side effects will build up as I go through the cycles. I just hope it works.
Please let me know if you plan any other meet ups and I will try to make it next time.
It was Mr Wallace Jacquie,
We did recognise each other tho although had managed to email pics of ourselves just before. Bit of a giveaway!!
See you all soon
Last time Allie brought a gnome that she has called ....oh no, I've forgotten! We booked the table under his name too. I want to say Mr Winston but that's not it. My brain! Anyway the plan was for us to put him on the table so we could find each other. As it was, the place was pretty quiet when we arrived, and we'd given each other descriptions on here so we could be identified when we came through the door.
But feel free to wear something ridiculous to draw attention to yourself if you like!
See you there
Hi Jacksy & Kay 123
Thank you, will definitely try to make it, will we have to wear something bright so we can all spot each other, ha ha
Hello Seajen and Wrighty,
Just to reiterate Kay's invitation to the meet next week. It would be great to meet you in person if you can get there.
Have only just picked your message up - but was trying to work out who might be interested in the meet on the 24th, to update the liver secondaries thread. You, like Seajen, would be very welcome if you are able to join our little group of "liver birds".
Hi I have just registered and would love to meet on Thurs 24th if feeling ok. I have just found this website and think it is great, at last I can be in touch with people with similar feelings and problems.
I was first diagnosed with breast cancer in Dec 2001. I was diagnosed with secondaries in May 2006 the cancer had spread to my liver, nodes and bones, I have been having Capecitibine,Zometa and Zoladex after a dodgy beginning I am now feeling a lot better.
I'm another of the ladies from the "anyone with liver secondaries" thread and you'd be really welcome if you could make the meet on the 24th. We're meeting in Cafe Rouge opposite St Pauls Cathedral at about 11am and will have lunch. Last time I think we were chatting until about 3pm!! There were 5 of us who met last time and I think we are all intending to be there again, plus another couple of "new" ladies.
I was diagnosed last June with liver mets, nearly 5 years after my primary dx. Initally they though it was a single tumour and operable but then the MRI scan showed it was too close to the portal vein so I had chemo for 6 months (Taxol and Avastin). That shrank the tumour quite nicely and I went in for a liver resection at the end of January but when he opened me up, he discovered there were multiple tiny tumours throughout the liver which had not shown up on the MRI scan. So he removed my gallbladder and a large gallstone and stapled me up again! My hormonal options (like you) are beginning to run out as have had tamoxifen and arimidex, but am now on megace - due a scan and blood tests in a few weeks to find out what is happening. Am doing ok but still adjusting to that life between scans (seems sometimes as if it is being offered in 3 month "bites"). Worked throughout my chemo on reduced hours (I'm a speech and language therapist) but took time off after the op, and am just starting to go back now. Like you I definitely feel there is a way to have a life with secondary cancer but there are also times when it feels very fragile.
You sound much fitter than me - marathon running is definitely NOT my style. But I used to do a lot of long distance walking - walked Hadrians Wall (84 miles) last Easter before my secondary dx and felt really fitter and better then than I had done for ages. Little did I know!! Am very keen to get back to some decent walking again but am having to take it a little more slowly than I would like - want to complete the North Downs Way which we have been walking in sections as we are now only about 30 miles from Dover.
Really hope that you can make the London meet - do ask if you need directions etc.
It is wonderful to read everyones messages THANKYOU and find there are many of us living with secondaries and getting on with life in the best manner we can. Also finding there are other treatments I have yet to talk about with my oncologist. I hope the xeloda works shame I lost my hair with docetaxol before changing to this treatment - I am just hoping it might grow back very slowly. Otherwise my fashion of colouful buffs continue - outdoor sops carry a big range, they are non itch, light weight tube of material and so easy to wear - great in bed too!!
Jacquie: The 24th April meet where in London and what time of day, I might be able to make it providing I feel well and sort out other family movements. I live in Cornwall and hoping to be in Chippenham the night before. Thankyou for inviting me.
I'm sorry to hear about your diagnosis, but welcome.
I'm 45 and was diagnosed last year with primary and secondary bc in my liver. I've had FEC (two doses only -buggered up my blood count) Taxol and Herceptin. Now on Herceptin and Tamoxifen and due my first 3-month scan results next week to see if it's working.
There's loads of us on here with secondaries and quite a crowd of us on here with liver secondaries - you may have seeen the thread 'anyone with liver secondaries?'. We're meeting up on the 24th April if you'd like to join us, or there's a general secondaries meet on 6th May. You'd be really welcome. Can you get to London?
Look forward to hearing how you get on
all the best
I was diagnosed initially in 1995 (aged 40) and my mets were diagnosed in 2004 (so not a dissimilar story to yours). Mine are in my liver and spine. Had to unfortunately give up the type of walking we used to do and ski-ing (I think my oncologist thought I was mad when I asked her whether I would still be able to ski!). Had paxitaxol in 2004 which kept me well until 2006 when my liver tumours started to grow again and I became extremely ill, to the extent that I was told to put my affairs in order.
I've had tamoxifen (for 10 years), then Arimidex and then Exemestane once the Arimidex stopped working. The Exemestane stopped working for me in 2006. My oncologist said I could try capecitabine although she didn't think it would work - that was nearly 2 years ago and I've been on it ever since although on a lower dose because of the state of my liver so don't really get the hand and foot syndrome that some people do.
I feel that living with our diagnosis is slightly different from primaries mainly because our future is so uncertain and we aren't given the hope the same way as with an initial diagnosis (which is true in most cases, although I appreciate not always). I'm also an upbeat person but it doesn't stop me from having my 'scary' days, especially when a scan is imminent, or my liver is hurting or waiting for the results as I so want to continue to be well, especially having been in that dark place before when I didn't have the resources to pick myself up.
There are a lot more options out there for us than there used to be and hopefully this will continue to be the case. I think it's a case of knowing how to learn to live with the uncertainty of how long we actually have got left and how we all deal with that is so very different.
I have lung mets diagnosed 18 months ago and have been through various hormone treatments, FEC Vinorelbine and 5 weeks ago had a pleural effusion drained and pleurodsis done. I have always been very active and busy and until the pleural effusion became a huge problem was running. Unfortunately my lung has not fully re inflated and running is difficult but I am walking and intend to do the Ribbon Walk at the end of May. I am just back from a week's skiing . I am still working. I think you have to take the view that life is there to be lived even if it is in 3 month chunks as someone else has commented , between scans. My oncologist is always reassuring me that there are plenty of chemos. I am just hoping that the next lot of scans and bloods will show that things have stabilised and no more chemo for a while. I think I'm due a little bit of luck!!
Best Wishes Kathryn
I am a year or two older than you and have had (known) liver & lymph mets since July '05. I enjoy the outdoors too (though not to marathon lengths like you!) I've had FEC, tamoxifen, taxol, femara and have been on capecitabine for more than a year now. If you fall into the 40% for whom it works, it is the easiest chemo out there. Like you, I live life in three-monthly chunks, from scan to scan (next one on Tuesday). It does take time to get used to this new 'normal' but it is doable and sites like this one certainly help.
I hope you will find it as useful and supportive as I do, only sorry that you have to find yourself here!
Welcome to the forums, I'm sure the other forum members will be along very shortly to offer support and share their experiences with you. You may also like to know about some of the other support services from Breast Cancer Care for secondary breast cancer. There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:
There is also a secondary live chat, this Breast Cancer Care's online chat facility where you can talk to others in real time, it's from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link:
I hope this is of some help
I have joined up to this website to share and swap stories as I feel alone with this disease as I really do not know others in the same situation as myself. Originally I had breast cancer diagnosed in 1996 at the age of 35. I was diagnosed with several secondaries in the liver and very small amount in the Lymph system in Aug. 2005 put onto chemo which shrunk back the tumours (one the size of a drinks can). Since then until Jan. 2007 I have had a good time; walking, treking mountains, skiing - enjoying my passion for the outdoors. Last year I took on the London marathon and completed it feeling good and uninjured or sore! and more importantly raised lots of money for Cancer research and raising cancer issues for the charity. Keeping fit has been my aim and way of coping.
So I am now back on the chemo had 3 cycles of docetaxol after the scan it showed that some tumours (not all) had continued to grow so my chemo has changed to Capecitabine. My onc. says there is 40 percent chance of this working. To date the only cancer side effects is feeling my liver slightly enlarged. Docetaxol was tough partculaelry as I became neutropenic. My onc tells me there is still some other chemos he can try if necessary. I have been through tamoxifin before 2005. Arimidex for 2 years then exmestime. So the hormonal options I feel are beginning to run out. I have been on zoladex for many years. I cope with that very well.
Most of the time I am positive and upbeat so live with cancer. I guess my message there is life with secondary cancer but now I just wonder if they can control things for me again. Living from scan to scan is certainly a different existence and one is so aware of the value of life. It has been interesting reading some of your stories and finding a site that hosts it. Thankyou Seajen