when i read all your comments it is really great, as it is the only time when i don't feel all alone with this horrid disease. i have secondaries in my liver too, and have an MRI every 3-4 months. As you say it is impossible to plan your life as it feels as if you do plan anything this disease will mess all that up just to spite you!I get very upset every time I have a scan or go to hospital......an usually end up in floods of tears of self pity, this is after nearly 2 years, does it ever get better?
Here, here to all those comments. At the moment I struggle to plan anything in advance. Thank goodness I have my dear sweet husband to push me along. I'd be floundering without him. What I hate most about this disease is what it is doing to him. It is so b*****y unfair.
What a relief it is to see written down all of the things that I have been thinking. I seem to be on constant moving walkway of one week gp(for Zoladex) then next week hospice (pain dr) then next week ONC at hospital for chemo. My whole life revolves araound this b****y disease. Everyone keeps saying how well I look. I don't think so I have fat cheeks and stomach from all of the steroids and I have to take about 20 different tablets a day. I just want to go back to being me being normal. That is never going to happen now. Sometimes its like everyone has forgotten that I have this disease. I don't want everyone to go on about it all the time but I just want someone to remember how s****y this is for me.
That feels good to get that off my chest.
love to everyone Caroline
I know what you mean too, (as I'm sure, do all of us). Most of the time I can juggle the kids and home etc. in between hospital apps, scans and so on. Everyone thinks I am fine (four years down the secondary line). But every now and then, I lose the plot. I think we all have to let go and give in to the awfulness every now and then. Even my partner thinks I am being unreasonable when I have a wobbly period. I think it is because he, like me, is guite used to living with it now. Currently, my outlaws are trying to persuade us to go to India with them next year, en famille and they can't understand my reservations and why I am not enthusing at the idea. There is no way I can plan that far ahead - and this brings me crashing down with a thump. Then I get cross about all the other simple stuff that is beyond me now, whilst carrying on as though nothing is wrong. It is the same old same old - a positive attitude is what people want to see and so we try and hide the truth, which comes ricocheting back at us when we least expect.
I know what you mean, I've had a fantastic response to the treatment I have had. Even my Onc says that this is the absolute best that I could have hoped for. However, I still have to deal with the fact that one day this thing will get me and I will have to leave behind the three people I love most in the world. I saw the onc this week and he threw the idea of surgery or radiotherapy into the ring. It has unsettled me quite a lot. I don't know what to do for the best. No one can guarantee any benefits from taking such action, so should I feel guilty if I decide to stick with the status quo. It's really getting me down. I really need to find a bottle of wine and a corkscrew....... stuff the glass!!!!!!!!!!!!!!!!!
Yes, it has gone quiet, you're right. Perhaps everyone's snuggled under the duvet trying to keep warm! It's certainly bitterly cold around here.
I've had a wobbly day today. I'm doing really well cancer-wise so nothing to complain about, but I'm just so fed up of side effects and exhaustion and the fact once you've got secondaries it never goes away. I'm tired of living like this.
Today I saw the doc who prescribed my anti-depressants last year, for a review, and just sat and blubbed. He was trying to ask what was the problem, and tactfully reminded me that I'm nearly 2 years since end of chemo (still on herceptin and tamoxifen). I couldn't seem to make him understand it's just bl@@dy hard work being a Mum, wife, employee, and keeping on going week after week with all sorts of unpleasant side effects. Sometimes I just want to say I've had enough and I want to get off now!
Anyway, I've got a lovely girly weekend with some friends to look forward to so I don't know why I'm so miserable. It'll probably be foul weather but we can curl up by the fire with a glass of wine and have a giggle.
Hope everyone else is OK, big hugs to you all
Have a look at the followng link for more info:- http://www.rfablation.co.uk/patients.php The key thing is that they look at each case on an individual basis so a referral is the only way to know if they can treat you. Its definitely worth a discussion with your oncologist.
The treatment is done under general anaesthetic and i was in pain after i woke up but this was well controlled by co-codamol and lasted about a week. I stayed in hospital overnight both times and went home lunchtime the next day. One thing i would say is that despite the pain it was a walk in the park after 6 cycles of taxotere!
Habibi, im not sure if Mia's rules have changed but i went to the Caribbean on my honeymoon in March and got insurance with them for just over £100 for a 10 day trip. The only stipulation they gave was that my oncologist put in my notes that i was fit to travel. It might be that they wont insure you until closer to the date of your trip?
Best to all
i am due to finish chemo soon taxol but to continue herceptin, but wondered if it was worth asking about rfat? on my last ct it showed the smaller tumors were more cyst like and my two bigger ones had shrunk by half?
what do you reckon?
sounds interesting? does it hurt?
hope everyone ok, great news snoogle!
chins up and positive thinking!
love to all. x
Jayne - that must feel awful to know that your onc/PCT is refusing you herceptin whilst others are allowing it. I think like Juliet the best idea might be to ask for a 2nd opinion - could you get to the Royal Marsden?
habibi64 - sorry to hear of your secondary dx. You must be glad to have got through the taxol (I did 18 taxol with avastin nearly 2 years ago). It can be very difficult (impossible?) to get insurance for outside Europe I'm afraid and I have always found Mia Online the best. I believed that they were looking at extending their cover to America and NZ and Australia but maybe I didn't understand fully - hopefully someone else can confirm that??? Where were you thinking of going?
Here's to a good weekend whatever everyone's doing.
I am new to this site. I was diagnosed with BC june 2003 at 39 and then earlier this year started having back pains which resulted in a compression fracture at L1 and after been admitted in hospital it all came as a shock to know that the cancer was back in much of spine,ribs and right hip plus throughout the liver.
Just finished 18 chemo(Taxol)and got myself walking again after months in a wheel chair and crutches.
Just reading everyones comments and stories makes me feel I am not alone dealing with this bl....y disease.
Going on to Aramadix now and looking forward to take a holiday next year outside Europe. I called Mia this week as I had heard that they are really good but I was told they would not insure anyone with breast cancer secondaries to travel unless it was to France.Spain or the Canaries, can any one help?
Hi Jayne..this may not be useful but wondered if you'd seen this trial? Belinda..x
Heather - that is great news - what are the "rules" for getting this treatment ? Maybe I should ask......
my news on liver secs not good ....one has grown again and they thought they would keep me on herceptain , since " i was still getting some benefit from it and was holding everything at bay.. except fpor one in the liver - they have now decided I must go straight on xeolda and herceptain will be withdrawn since this marked progression and they are sticking to new nice guidelines - I did say many oncs were ignoring this but they still will not consider it - I asked if there was anything else and they said they would ask PCT for laprinik (? spelling) but they did not think pct would fund it - so now i will get nothing ( am her2+ and er+) so the post code lottery has not turned out too well for me.....what can I do ....anyone any suggestions? Does anyone know how much herceptain costs and if it is a top up drug - it just feels wrong that its doing me some good but they wont give it to me. any suggestions welcome thanks .Jayne
That's brilliant news, Heather. RFA really does seem to work well if you are able to have it - unfortunately one of my tumours is considered too close to the portal vein which is why I ended up having SIRT. I'm hoping that will give me some substantial time off chemo too though!
Hi hope you dont mind me sharing some good news and a positive story about radio frequency ablation treatment for liver mets. Got my PET scan results today which showed no active cancer in my liver and bones and no sign of new spread. I finished 6 taxotere in January of this year and in the past six months have had two lots of radio frequency ablation on my liver at University College Hospital in London to treat nine or ten small lesions (they never confirmed exactly how many there were) and do think that this has had a really positive bearing on keeping me in remission combined with Arimidex and Zoladex. My last CT showed that there is still a small area of tumour that they werent able to get during the first two treatments so I'll be going back to get this zapped, hopefully before the end of the year. Im just so grateful to have had almost a year without chemo that I wanted to share this in case there is anyone out there considering their options after chemo.
and thank you kay for your reassuring words, I must say I have found more support on this site than anywhere , it is a lifeline at any time of day or night.
love to all xx
Just trying to catch up with everything on this thread - been away in Cyprus for the last week.
Dawn - really so sad to hear your news. You must be very disappointed that Herceptin hasn't continued to hold things for you. As you may remember, xeloda worked for me for nearly a year and for some of that time I was NED on scans. So really hope it works well for you too and that combination of xeloda and herceptin hits the uggers hard. Think you've probably had lots of advice re looking after your hands and feet - that was by far the worst side effect for me - but happy to give more advice if it would help. I used to plaster my feet in plain aqueous cream at night time and then put cotton socks on - that seemed to help more than anything else. And took vitamin B6.
Snoogle - tumour markers of 19 are fantastic! And it is always a boos to hear good news - particularly when there is so much bad news about.
Jayne - why do you have to stop herceptin when you start xeloda? I'm not HER2 positive so know very little about herceptin so may have missed something crucial here. Clearly Dawn is continuing with her herceptin though, so am not sure.
Truffle shuffle - Your onc certainly doesn't sound concerned at all and so I think you should try not to be as well. Chemo itself can frequently affect some of the liver function tests and that looks more likely to me, particularly given this was only a "little elevated on one occasion".
Gossie - hope you get some travel insurance sorted. I've used Miaonline twice now and found them very helpful and not too pricey at all.
Apoogies to all I've missed out - it really is hard to catch up properly.
Love to all Kay xx
hi dawn and marmite.
thanks for the advice on insurence and the number i will give them a ring.
i hope every one is ok
my life insurence came through today, i felt as though it's bitter sweet! not really sure i want anything to do with it but my husband reconds pay off debts, then spend it on whatever we want! i've always been a saver and quite carefull with money? the letter did make me laugh though, as the insurence company were " pleased" to give it to me!!!!! thanks then!!.xxx
can anyone give me any advice on liver secondaries. I am part way through chemo after recon for 2nd stage breast ca.
i went to see onc yesterday and she says she is very pleased with my toleration of chemo and that I am not at high risk due to staging and only one lymph node involved.
I was so pleased with her positiviy that I actually asked a question , I just asked what my blood result were showing, she told me all ok but that my gamma gt was a little elevated on one occasion, I then freaked thinkin i have liver mets.
onc says not to wory coz they are not, and that i may or may not be offered a scan at end of chemo, but they dont need to see me until i have finshed last chemo any way.
I am now worried that i have liver mets, am i paniking to soon
love to allxxxx
Debs I hope you are doing OK and managing to enjoy your weekend.
Snoogle, as I said on here and FB, enjoy your good news, we all love to hear good scan results, no matter wot we get ourselves, as does help to know others doing well.
I have to say, reading a lot of threads over the last few days, has shown me that quite a few ladies on Herceptin also take it with another type of drug, so I spose, that I should be grateful that I managed nearly 2 years on just herceptin alone, which kept things shrinking for all that time. I also see that ladies on herceptin and other drugs, seem to get good responses. My onc did say that herceptin alongside another drug is a very strong cocktail to help zap the blighters. So feeling more positive.
Hopefully I will remain on herceptin and xeloda for many years - with good results.
I hope that everyone else is doing OK. Gloomy weather makes one feel gloomy, but hopefully you are all doing fun things.
Lots of love n hugs
Hi Snoogle - thats great news and really pleased for you - I agree with everyone - so good to get some good news
Dawn so sorry for your news but I have read good things about xoleda - i think my news is similar to yours - I stopped chemo in march and scan in august and october has hels most thigs back with herceptain and zometa but one in my liver has grown from 3 cm to 6.3 cm - but only one out of the multiples there - they have decided to delay xeolda for a couple of months so i can continue getting herceptain ( which they will withdraw when i start chemo again ) onc said it was about managing risk - has anyone else had this - progression but keeping on with old regime? jayne
please don't don't ever feel guilty about good news mine seems a but grim but I do get a lift when reports of a good scan result come through
Long may it continue.
Feeling a little guilty with everyone else's bad news, but I saw my onc yesterday for the results of my ct scan, heart scan and blood tests. Everything is looking really good. The tumours in both my liver and breast are still shrinking and my tumour marker count is down to 19.
Love to everyone,
Dawn, sorry to hear about your results - it sounds as though your onc is reacting quickly to things though and getting you on new treatment straightaway - let's hope the Xeloda works really well for you - and that, as it does for several other ladies on here, it works for a really long time.
I have used Miaonline twice now and they are very helpful and very good. I was only on Herceptin at the time when i went away, but they covered me and it was only about £70 for 2 week hols.
Try ringing them on 01268 782745.
I don't have liver mets, but on permanent chemo. Miaonline and another one (chemobrain) won't let me remember the name. I googled insurance for secondary cancer and there name came up something like cancer insurance. They were very helpful said they wouldn't insure until 3 or 4 weeks before travelling and it would cost about £100 and they have to write to your consultant, but they would cover me to most places in europe. Or you could risk it and just use your European Health Card. I have been away for the odd week in Europe this year and been fine.
Oh Dawn, I am so sorry to hear your disappointing results. I can only imagine how you feel, swinging back into that gut-wrenching feeling of unreality and yet you know it is real. I guess we can all remember how it felt the first time around. I hope the positive reports of Xeloda on here have given you some hope and comfort.Sounds like thay are taking the cautious approach and it's only a little change in the tumour, but still, it's the fact that herceptin isn't holding it completely at bay that must be the biggest blow.
Come on and rant all you like, we'll be listening
Great big hugs and love
I am really sorry to read that you had disappointing results. There is just nothing worse.Xeloda kept my liver mets in check for two years. It was so easy to take that I didn't feel I was on chemo at all. The worst side effects for me were the cracked feet and hands but these didn't start to happen for quite some months. Takes time to build up. Udderly Smooth cream is (as Belinda says) a really good treatment for hand/foot syndrome along with wearing cotton gloves or socks at night time (mmm... lovely). I do hope it works well for you. Take care,
Just wanted to say I'm sorry to hear your news but I've heard lots of good things about Xeloda(my onc. said that will be my next chemo option)and that it's one of the better tolerated ones. I hope it helps you and gives you hope back. Keep going Dawn - it's such a tough disease. Sending you lots of strenght and hugs. Love Anne xxx
hi all, sorry not been on for ages my bloody computer broke down, so there for sorry i couldn't make the meet up, hope you had a nice time?
so sorry to hear of the bad news some of you are going through.
laura, i was 30 when i was diagnosed with breast cancer, my little boy was 9 months. had mastectomy, chemo radio, herceptin, then it spread to liver may this year, so started chemo again with herceptin, my little boy now just turned two, although he has no idea whats going on i think he thinks everybody's hair can come off at the end of the day???
it is hard and very upsetting sometimes but you have to get on with life with even more reason to live it to the full.
i hope you and family are ok, please feel free to ask any thing evrybody on here has really helped me a great deal.xx
can anybody give me any advice with insurence, going to euro disney in nov, but no one will insure me, even cancer specialists because i'm still having chemo???? what do you guys do or can i never go away???
hope everyone is well?
Hi Dawn, I'm really sorry to hear of your progression. I used Xeloda for 8 months and, as others have mentioned, found it so much easier to maintain a fairly normal and active life as it doesn't hammer your bone-marrow like most chemotherapy drugs do.
I was advised by my onc to take vitamin B6 beforehand and throughout the treatment to help with hand/foot syndrome. The best topical combination for me was emu oil and rosehip oil.
Best of luch with your treatment and I hope you get a good result.
I am really sorry to hear your news. I have just started on xeloda and its not too bad so far. I will send you a pm
Dawn, so sorry to hear your news. Will send you a more personal message on facebook, but you have every right to be angry, this cr/p disease is just so bl**dy unfair! Snoogle x
Hi Dawn, I'm so sorry to hear your news. I have been on Xeloda since April 2008, continuously. I haven't had a day in bed, my bloods bounce back each cycle and I'm on quite a high dose. My hair is thicker and curlier! A couple of months into chemo all active cancer stopped and things have remained that way ever since. I know many others who have had such good results with this chemo. Many for years. The cream I use is Udderly Smooth, it's good stuff..I'll PM you now..Love Belinda..x
Sorry to hear your results. I have not had Xeloda but there is a thread running about the side effects further down this page and there are a lot of ladies on here that have had it with good results.
I send you love and prayers this is such an unforgiving disease. You are too young it is so unfair.
I was on Xeloda for 2 years and I got Ian to rub my feet with aqueous cream (get a big tub from your chemo ward) I got good scan results from it. While I was on it I could still have a life, I just needed to organise things around the chemo regime, anti-sickness tablets and food 30 mins before the tablets, keep your bowels moving. Sorry your results were not what you had hoped for. Hope you have success with this one - and the good thing about Xeloda is it also works on the brain.
Sorry to hear about your results. You have every right to feel cr.p because it is.
I have never been on xeloda but i am sure a lot of people that have, will post.
Hopefully speak on live chat again next week!!!
I'm sorry to read of your recent results. You mentioned the side effects of xeloda, if you would like a copy of the BCC fact sheet on this just follow the link below:-
I hope this is helpful.
Sam (BCC Facilitator)
Well what can I say, my news is not good - well I dont think so.
Apparently the scans are showing some movement in my liver and boobs, so am now starting Xeloda a week on tuesday to run alongside my herceptin.
My onc said that it is only a small change from last scan, but there is a change, so to start on this for 3 months, then have another scan to see what is happening.
I am absolutely devastated to find out things are moving again, although I did know deep down that it would not be good news due to the lump growing again in my boob. My world has collapsed again for me and fear of not seeing my daughter through primary school and my son actually start school is crippling me.
I know that there are still a lot of treatments still available for me to try (as my onc pointed out), as only have had chemo once at the beginning. But it doesnt make it any easier to deal with or get my head around. I am only 41 for christ sake, and my babies so young, and it is so unfair that they will probably have to grow up without a mum!! Sorry, just feeling really sorry for myself.
Could anyone either pm or post on here about Xeloda - side effects etc. I know that I shouldnt lose my hair (which is a blessing, as hated that first time round) and I know that my hands and feet might react - but how, and what should i try???
Sorry this is full of self pity and anger, but I just feel so gutted. I was hoping that Herceptin alone would continue to work well for me, as the last year of scans has showed no change.
I hope that everyone else has had good results, and Debs, I hope you are doing Ok after yesterday.
Love to you all
I have just popped on to check on results.
I think the biggest shrinkage was after a couple of months and than it held it for almost 2 years had a normal life was able to travel and walk and enjoy moving. So long may it continue for you.
Just popped on to see if there's any news on Manon and Dawn's results.
Nice to hear your good news Caroline
I have been for my scan results today this scan was done as a marker so they can tell if the chemo I have just started is working (xeloda).
I have already had 2 cycles of this chemo they were a bit late with the scan.
Anyway there has been NO CHANGE since the last scan which was in May which is good because I had a chemo break over the summer.
The only thing that is a bit puzzling is that they have mentioned again about a patch on my spine which doesn't show up on a bone scan but on a ct. They aren't going to do anything about this at the moment unless I start having some pain in that area.
I hope the Xeloda works for me because I don't think that there are many more chemos for me to try.
Hi Laura, welcome but sad you had to join us. I was diagnosed with cancer (secondaries within a week of primaries) in March, I have two children aged 6 and 10. We had no help with telling them initially, but as a couple we believe in being as honest with them as we can about all things, so they knew that mummy had a sore breast and was going to the doctors to find out what was wrong. When the diagnosis came it was very difficult to tell them, infact my incredible husband managed that awful task. We update them whenever we have results of anything, blood tests or scans, and they call me 'radiomum' when I have had a nuclear medicine scan and they can't have much close contact for 24 hours. We involved their school right from the start and the school has been fantastic in handling the issue, and when my eldest was ready for it covering cancer as part of their pshe programme with my eldest's class and explaining that I had cancer. My eldest's classmates have been incredibly supportive towards her. My two don't usually come to appointments with me as they are at school and don't like to be at home when I have my herceptin when it falls in school holidays. But if they wanted to become more invovled when they are ready I wouldn't have a problem with that. I have to state that it is my very strong belief that children worry more about what they don't know than about what they do know.
I hope that you are able to find a way to tell them and that you find the support that you need at this very difficult time. Wishing you all the best.
Hi Laura, I'm sorry you've found yourself here too. I haven't been here long myself and have found these forums very informative and helpful.
I'm 40, was diagnosed in July this year and have children aged 7 & 8. We had no offer of help in explaining things to the children and dealt with it in our own way. So far they know that the cancer will never go away and that the medicine I have (Taxol) is trying to shrink the "bad bits" so that I can have a different medicine which will try to stop them growing bigger for a time. Between themselves they've now visualised this into the bad bits being lumps built from black lego and the medicine releases loads of lego fighters into me that shoot the lego with lasers (like Star Wars!). Other than that we've agreed to answer any questions they have honestly and to tell them if and when things change.
Yours may be a bit young for this but I've also found it's helped if they can come with me occasionally for various things. I have my bloods done before chemo at my GP's and they came to watch .. and quizzed the nurse about the whats whys and hows! They also came to the hospital for my last CT scan and were given a guided tour of the machine. Lastly they also came to the hospital with me, and although they can't stay for the chemo they met some of the nurses. All of these little things have helped take away the fear of what happens when mum goes for treatment.
Hello Laura, and you are very welcome on the thread, although we wish you didn't have to join of course.
What a rollercoaster ride you've been on, and with you (and your kids) being so young. You must still be in a state of shock. Do you have a partner? How are they coping with it? Are you able to support each other or each trying to cope in your own way?
Your message reminded me of when i was diagnosed with liver secondaries, and they immediately offered me a Macmillan nurse to help me tell the children - that was almost more shocking than the diagnosis! Mine were older than yours - 8, 14 and 16 when I was diagnosed 2 and a half years ago, but still young enough to need their Mum (who isn't?)
There are several others I can think of with young children like you, and I'm sure they will be along soon to tell you about themselves. In the meantime, just sound off on here whenever you need to. Ask anything at all, people here are very informed and generous with sharing their knowledge. And we do know a bit of how you feel, and will support you any way we can.
Oh Snoogle, what bad timing! You get so psyched up for these appointments don't you, and then for that to happen. What a nightmare.
Talking of nightmares, sounds like you're in one of your own Dawn. So sorry to hear about your worries re your boob lump growing. I know what you mean about your imagination going wild about the state of your liver, but I guess it doesn't automatically follow. Stupid when people say 'it'll be allright'. My advice is drink wine, eat chocolate biscuits, and distract yourself with shopping/DVDs until your appointment.
Best of luck for tomorrow, will be thinking of you
love Jacquie x
Posted on behalf of new user Laura
Kate, BCC Moderator
hi, i hope nobody minds me joining in,
i have been reading alot of ur posts and think you are all so brave, il tell you abit about me.
my name is laura and im 25, i have 2 kids aged 2 and 5. i found a lump in my left breast in july, i went to the gp and they sent me to a clinic, they done a ultrasound and a biopsy and a week later i was told i had cancer. they done a biopsy of the lymph nodes and that also came back as cancer.
I had a lumpectomy and full node clearance. 2 weeks later i had an infection so they sent me back to hospitol, as a precaution they done a ct scan. I went back the following week and was told it had spread to liver. I asked if they could make it go away and was told no.
They started me on chemo and i have my second lot on thursday.
I have been given a social worker to tell me how to tell my children mummys lump will never go away.
I am petrified and just wonder if there is anyone else around my age or with young children, i feel so alone.