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
Hi Seajen
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:
breastcancercare.org.uk/content.php?page_id=11306
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:
breastcancercare.org.uk/content.php?page_id=6218
I hope this is of some help
Best wishes
Lucy
Welcome SeaJen,
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!
Jenny
x
Hi Seajen
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
Hi Seajen
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.
Take care.
Pinkdove
Hi Seajen,
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
Jacquie
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.
Jenny
Hi Jenny
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.
Kay
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.
Hi Wrighty
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”.
Kay x
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.
love Jacquie
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
Beli
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
Jx
Mr Wallace - that was it!
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
Dawn
Hi Everyone
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.
Jenny
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!
Ann
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 "
Love Tracyxxxxxxxxxxxx
Hi All
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
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
Kay xx