Hi, I am 37 years old. Had my first diagnoses in July 2006, had 6 motnhs of strong chemo for advanced breast cancer, then had a mastectomy and 12 lymph nodes removed, 2 contaminated. Then radiation. Finished treatment in April 2007. I am estroge positive and take arimedex.
Had a second scan in October 2007 and shoed a spot in my lower back, in the spine.
I am scared. No private insurance, going to public hospital and every time see a different doctor. Here in Australia. Doctor just told me i have 4 options;
1- change hormonal teraphy to tamoxifen
or 2- take xeloda ( a kind of mild oral chemo??)
or 3- more chemo but she thinks would be too much
or 4- clininal trial that uses xeloda plus endostaurin??/
and also take shots to strenght the bones every so often.
I am lost. I am not sore anywhere, I feel really healthy. She scared me when I asked about life time… most of people live less tha 5 years, she said… few 10, few 30… but i’m scared.
I have two little boys, 5 yeasr old and 20 month old!!! I want to survive as much as i can for them. I will do anything, look for treatmente anywhere whatever it is to et better. Help!!!
Love to all!!!
Lu
Sorry to hear of you diagnosis. There is a forum here specifically for people who have been diagnosed with secondary breast cancer. I don’t have secondary cancer, but I hope you will get support from them. I know several of them have young children so you will be able to talk to people who understand things from your perspective. I haven’t any children and haven’t been diagnosed with secondary cancer, but it’s something many of us worry about.
Mole
Hi Lu
Sorry to hear about your news, especially having two small children it’s really hard as I was a younger woman when I first was diagnosed and had a 6 year old son.
I don’t know how the system works in Australia but I have bone mets and am on a bisphosphonate (Pamidronate) for bone strengthening and have been on it for the last 3 years.
I asked the nurses if I could see my oncologist every time rather than a registrar and that’s what happens now as we’ve built up a relationship which is really hard to do when you keep seeing different people so you have my sympathy there.
I was on Tamoxifen for nearly 10 years (because I have a family history) and then changed to Arimidex once my cancer came back. Are you through the menopause then (which seems very young at 37 but chemo can start it which it did with me) because I know here in England they tend to give it to people who are post-menopausal.
I take xeloda and have done for the past year with no side effects really. Although, to be fair, I’m not on the full dose and some of the side effects can be sore hands and feet and diahorrea. But you don’t lose your hair on it and I feel well on it not like the other two chemos I’ve been on!
I haven’t heard of endostaurin so am afraid I can’t tell you anything about that.
I have goals and aims as well and I want to live long enough to see my son graduate from university which is what I’m determined to do!!! It’s hard sometimes because we don’t know what’s round the corner but I do think being ‘determined’ rather than positive (who can be positive all the time?) makes a huge difference. Also, if you feel relatively well that makes a big difference as well rather than if you have pain which can drag you down.
Ignore the statistics as everyone is an individual - my oncologist won’t give me any indications in that way as she says that people constantly amaze her and with new drugs that are coming on the scene all the time means that we can live longer. My aunt had the same as me 7 years ago and she didn’t survive because the chemos weren’t around then that are now.
Another lady posted info about another new drug called Ixabepilone (Ixempra) - not sure whether you’ve got it in Australia and I’m not even sure whether it’s been approved here in England yet which is supposed to work alongside Xeloda.
Good luck and keep your spirits up.
Love Pinkdove
xxxx
Hi Lu
Sorry you have had to join us. I was dx with bc in July this year and then told 10 days later had spread to liver. I also have two children one is 4 in December and the other is 11 months old. It is very hard, as like you, just wanna be around to see them grow up and leave school etc etc. I am 39 years old.
I can’t offer advice re yours in lower back, but hopefully you will get treatment sorted and start zapping the b******s. My kids give me the strength to fight and keep fighting. I have had 4 out of 6 chemos so far, and doing OK. I too would ignore statistics, as they frighten us so much, and I don’t think anyone can really tell you the truth, as no-one knows. Everyone is different and an individual, so try not to dwell on that, just think positive.
Hopefully some other ladies with more experience and knowledge will help you with information, but we are all here to support and help each other through the good and bad times, so keep posting.
Stay strong and try to be positive, very hard, but does help I think.
Love
Dawn
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Hi Lu, I was diagnosed with breast cancer and bone secondaries at the same time, in 2003.
I’ve not had chemo yet although it’s on the back burner for sometime in the future. I started off with Tamoxifen (it worked well) and I’m now on Arimidex. Also have bone strengthening treatment, I used to have a monthly infusion but now take a daily tablet instead…(prefer this) I’m still pre-meno so have a monthly shot to stop my periods.(which enables me to take Arimidex.)
I still have no bone pain 4 years on, in fact I feel really well so hope this message will help a little.
Take Care…Belinda…xx
Hi Lu,
I’m also fairly recently diagnosed with a spot in my lower spine and don’t really have any pain. I also have a 5 year old and will do anything to spend as much time with him as possible.
I’m sure there are plently of people on here who can give better advice then I can so keep in contact. I have found that reading these posts about ‘real’ people with this awful disease is equally helpful then anything an oncologist could tell me.
Take care
Erin
I have posted this on of Terry
Kind Regards
Sam
Moderator
Breast Cancer Care
Hi Lu,
As some will know here it is my wife that has BC.
We to have kids my wife wants to see grow up etc. I don´t know who told you Xeloda is mild, if you read up on it, it is VERY strong.
My wife has lung, bone and sever liver mets. Xeloda plus taxotere kept it at bay for a year, then she was on Xeloda only for 7 months which also kept the brakes on.
Xeloda seems to have a mean working time of about a year or so. Now she is on Femara and we will see how that keeps the brakes on.
Don´t despair, they said my wife would be gone by LAST Christmas, she is still here !!
Take care
Thank you to all of the messages. I will see another oncologist for a second opinion and mention about some of the drugs you guys mentioned. I am also looking for some alternative treatment, like maturopath, meditation.
It’s so hard when we are waiting for treatment. I still don’t know what treatment i will have. Still waiting for the oncologist to call, that’s why I’ll seek a second opinion. I need someone more confidente that does not make me wait and give me answers.
Hope you are all well and happy. For some weird reason, I am happy, I love my life and my family and they make me happy. I’ll survive for them. Love to all. Luciana
Hi
I think it depends on what dosage you are on with Xeloda - I am on a very low dose because of the severity of my liver tumours and don’t get the really bad side effects that a lot of ladies do with their hands and feet.
I also think it depends on the person because we all react differently to medication so what might be okay for one person, another person might react in a completely different way.
I also don’t think it’s good to say that Xeloda only works for a year - I’m just past that point and know of a couple of people who have been on it for longer than that. I hope I don’t come across as argumentative Terry but it doesn’t help to read that you think it only works for a year - this may well be true but we have to have hope that it will keep it at bay for a lot longer. Again, I think it’s down to the individual. I was on Tamoxifen for nearly 10 years and it worked for me for that long yet for other people it may not last as long. We’re all individuals and not statistics.
Posted on behalf of Terry
Kind regards
Lucy
Moderator
Breast Cancer Care
Hi Pink,
Sorry for that, it is just what I have read about it for the last year or so. Of course it can go on and on, just depends on the person.
Best wishes to all
Hi Terry
No problems - I can get a bit sensitive at times because it’s such an unknown thing for all of us that I need to have hope - my goal is to see my son graduate from uni in 2009 - he’s lived with this over his head since he was 6 and he’s just turned 20 now. Like you and your wife I have such a strong need to see what happens in my son’s life and I can’t bear the thought of not being there for him (or my husband) as they are the two most precious people in my life. I want to know how his life turns out, like we all do for our children.
Hope I didn’t offend you and good luck to you and your family.
Regards
Pinkdove
Hi there,
Just to add, I know a lady who has been taking xeloda for liver mets for almost four years now and I hope to emulate her success. Only another three years to go…
Jenny
x
Hi all – I’m the “Xeloda queen” that Jenny mentioned – diagnosed with liver & bone mets four years ago, and on this drug since then, first at a “full” dose of 2000 mg x twice a day (hand/foot syndrome kicked in after about three courses) and more recently at a lower dose - 1000 mg x twice a day. Following some liver met progression two years ago, my oncologist changed my aromatase inhibitor from Arimidex to Aromasin, and I’ve been stable ever since, with pretty much no pain and “normal” bloods & liver function. I also take the tablet bisphosphonate Bondronat for bone mets that Belinda mentioned – fabulous drug, with no side effects for me.
Lu, I don’t know how the Australian health system works, but here are some thoughts that I hope might be helpful:
– Is there a hospice you can go to/contact? I know how scary that might sound, but I started seeing the nurses and doctor at our local hospice when I had my mets diagnosis; hugely helpful in co-ordinating care, answering questions that the doctors don’t have time for, giving advice on options for treatment, addressing issues around pain & drug side effects, providing complementary therapies, dealing with my (very late!) lymphoedema, etc. First trip was a bit terrifying, but I’m so pleased this exceptional resource will be available to me and my partner if I need them.
– definitely ask for a bisphosphonate (either tablet or intra-venous) to deal with your bone mets;
– if you’re looking at holistic therapies, please have them as “complementary” rather than “alternative” to your mainstream treatments – sadly, there’s no proof that they will alter/cure your cancer, but they can certainly help you to have a better quality of life, which is an important factor when you have metastatic (advanced) and incurable cancer.
– there’s a world of information (from professionals and on the internet) about various treatments for secondary breast cancer; most of the women with BC mets that I know have found it’s both useful and empowering to be as informed as possible about what’s available and how these treatments have worked for others;
– these discussion boards, and the private ones which developed out of them, have been a huge support to me; secondary breast cancer is so isolating, with most local support aimed at people being treated for their primary BC – at best, irrelevant to us, and at worst positively unwelcoming. We are all here for each other, and you will always find someone ont these boards who can give you encouragement and hope.
Regards, Marilyn xx
Hi Marilyn
Good to hear that you’ve been on Xoleda for four years - long may it continue. I’ve been on it for just over a year and my oncologist is reluctant to take me off it because I’ve been turned around by it from the condition I was in last year.
Am also on a bisphosphonate (Pamidronate, I.V.) as I have a portcath but was on bonefos in the early days before I had to have chemo the second time around.
Unfortunately I’ve been on tamoxifen (nearly 10 years), then Arimidex and then Exemestane and they’ve all stopped working for me now but who knows what’s around the corner. I just hope that the Xoleda continues to work.
I agree with you that having secondaries is quite isolating. It also irks me a bit when I go to our support group (which I set up 10 years ago) and people just don’t want to know anything about it. I have never ever spoken about what’s been going on for me (in fact some of the primaries are far more doom and gloom than me!!) but information sharing like the Westminster event and that I was going to it etc. We’ve just had another lady diagnosed in our group with secondaries to her spine and she wanted to say something at the meeting tomorrow night but has been told by the breast nurse that it wouldn’t be appropriate. I know it’s scary to people but the three of us (who have mets) are the most upbeat and happy (most of the time!!) people and although I can understand where they are coming from, especially the newly diagnosed people who really don’t want to know about that, it’s life and we have the same problem when people die. It’s been an issue that we still haven’t come up with the answers to.
Pinkdove
x
Hi Pinkdove
So sad to hear that your local support group isn’t useful to you or the other participants with mets – you do wonder what the point is of a support group where the nurse tells you not to talk about your experiences/worries/fears/needs? Perhaps you could suggest a session about/for people with mets, so you can get the support you need and those who might be “scared” can decide whether or not to attend? Even better would be a group just for you and the other members with mets, but that would require the breast nurse to understand and be commited to responding to your needs – it doesn’t sound like your organiser is there yet (!). Roll on some national standards for our care, treatment and support. And good luck with the Xeloda!
Marilyn x
Hi Marilyn
Thanks for your post. I did think seriously about setting up another group just for us but what keeps coming back to me in my mind is what if I can’t cope hearing about some things that people say? I know it sounds silly (especially as I’d worked in social services and for over 14 years with drug users) but at least on forums such as this you have a choice whether or not to read something and this is something that is happening to ‘me’ rather than clients.
We’ve lost about 5 people over the last 10 years to secondaries and apart from the last lady, Sue, I’ve had to distance myself for my own preservation as they were taking me down with them. Sue though was completely different and I was with her right up to two days before she died and it felt the right time to withdraw then. It’s made me realise that it’s not the disease itself but how people cope with it and Sue was completely different from the others. She was very scared but also it was easy being her friend - I can’t really explain it!
I’ve known the breast care nurses for a long time and I do understand where they are coming from but I also think it is about reality without really putting the wind up people! Loads of them in our group (and we have over 100 ladies although they don’t all attend at one time!) will never go on to develop secondaries but to me it’s about them acknowledging that our diagnosis is different and how we deal with it.
How we deal with it is the 3 of us go out to lunch!! We used to do that with Sue as well so it’s an informal sort of group but we have control of it - it sounds really awful when you put it down in writing as it sounds so selfish.
I agree with you about the national standards for our care - it’ll be interesting to see what Mike Richards has to say in the Cancer Reform Strategy.
I went to a meeting of our local cancer network group last week and it makes me wonder whether our care (all of it) sits within the palliative care team. I’ve read a few other posts on bcpals where people wonder whether a secondary breast cancer care nurse is the right person for the job and I’m beginning to wonder that as well because we should all have the palliative care team working with us anyway (Macmillan Nurse, District Nurse, etc.) and they are the ones who have the skills but there still seems to be a huge gap in communication on the ‘softer’ information such as benefits, occupational health issues, gold standards framework, etc. etc.
Rambled on too long now!!
Take care.
Pinkdove
x