I’m new to this but hope to link up with others who have the same experiences as me in that I was diagnosed in September 06 with Grade III Breast Cancer, 16 cancerous lymphnodes and then in November 07 told I had extensive liver secondaries. Just completed 8 cycles on Taxotare in June but now have pain again in my abdomen and am awaiting scan results. Just wondered how everyone else was coping? Consultant says my prognosis not good as less than 5% survive 5 years!! Concerned that my cancer may be active again after just 3 months of no chemo. Have Herceptin every 3 weeks. Appreciate anyones comments and support. Thanks. Carol
Hi Carol
I was diagnosed in November 07 with pretty much the same picture yourself…liver secondaries, but I have some bone secondaries as well. There are quite a few of us on the site here in similar sorts of situations. How do I cope ? Try not to think too much about the statistics, carry on as normally as possible, try to have a laugh and to really enjoy spending time with just my husband and my son,
Just on Thursday 8 of us from this site met up to share stories and talk with each other- I found it really helpful as I often feel so alone and so odd when out with friends and family. I don’t find my extended family that helpful although my husband is very supportive emotionally and practically.
I am on my second chemo after taxotere - taxol plus avastin, it is hard going back on chemo again, but you pick yourself up and start again. I hope that you can have additional time free from chemo - do your markers give you any clue? I haven’t found pain or discomfort a really useful sign of how things are going, but for me fatigue has been a clue. Do have a look on some of our old threads about liver secondaries, think I will reactivate it if no one else does!
Hope you are doing Ok on a day to day basis - keep in touchm
CathyX
hello Carol
I was one of the London 8 and I can confirm it was great for the morale!
I agree with Cathy - you just have to take it day by day, put the statistics in a box in your head and just get on with things in as far as its possible. My oncologist doesn’t like to talk about prognosis - he says he and his colleagues are assessed on the accuracy of their forecasts and they are all so far off the mark when it comes to individuals that it is counterproductive.
What are you on after Taxotere? Is it just herceptin or are they giving you something else? I had 9 sessions of tax and am now on arimidex (almost a year now)
look after yourself
Barbara
HI Carol
And I am another of the “London 8”! I find meeting with others extremely helpful - gives me a great boost and really helps me feel not so isolated. Like Cathy, I do find it difficult when out with many friends (even old friends who I’ve known for years) - my priorities seem so different now and there are only a few very close friends who seem to understand why I don’t want to talk about retirement plans/possible grandchildren/children’s weddings etc etc.
I do know quite a lot of the statistics but tend to focus on the fact that there are people with secondaries who are living many years. I don’t see why at this stage I shouldn’t be one of those people (even though I know the odds are against me) and that helps me cope most of the time, albeit with some black days or even weeks. I also tell myself that if my life is going to be short, I may as well enjoy what is left of it! Much easier said than done though!! I do try and keep as busy as I can without getting overtired, and have kept working 4 days a week - a job that I really enjoy. Also trying to make sure I do lots of “fun” things with my husband and my children (who are all in their 20s).
I was diagnosed with liver mets last May/June and had Taxol and Avastin last year and then a lot of progression earlier this year after only a few months off chemo. However I am now on xeloda and that has worked extremely well for me - plan is to keep me on it indefinitely on a low dosage to minimise side effects. We talked on Thursday when we met in London, about the fact that some chemos work well for some and others for others - so just even if taxotere hasn’t held the cancer in check for long, doesn’t mean that another chemo won’t. HOpefully your scan will show there isn’t progression though - like Cathy, pain has never been an indicator for me at all. Tumour markers have been though.
Do let us know how you are getting on - hope you don’t have too long to wait for the scan results.
Kay x
Hi Carol,
Just wanted to add my bit, as the others have said statistics are just that, numbers and they don’t take into account the individual person. As far as you can put them out of your head and try to enjoy each day.
kiwi
Hello everyone
Thanks to all of you for your replies. I’ve only heard of one other patient at my hospital with liver mets and am sure it helps to know others that are going through the same as me, and as you all say meet up occasionally. Hopefully now I’ve joined this site I’ll be able to do that.
I finished Taxotare in June and am currently on ‘a break’ which I’m glad of - until I started with pain again last weekend. Had scans last Thursday and got results on 13 Oct. Fingers crossed. Must say though pain seems better this week - taking less painkillers etc. so hopefully that’s a good sign. They did test for markers but my consultant says these are not always significant so don’t know what they are.
I too find it difficult with extended family sometimes. I know others have to get on with their lives and that’s how it should be but must admit I feel a bit resentful (if that’s the word) sometimes that it can’t be me looking forward to the future with as much confidence etc. (Kathy I’ve got a daughter 25 who isn’t in a relationship so I feel sad when I think I may not see her married! ) My tolerance also seems to be different when people are moaning about trivia, then I feel awful as I’ve previously been a very sympathetic understanding person and still am most of the time.
I’m pleased to hear that other chemos are working. It gives me more confidence if I have to go back on treatment that something will work for me.
I’ve just had a pack delivered from the Penny Brohn Cancer Centre (previously Bristol Centre). Wondered if anyone has been on their residentials and found it helped?
Take Care.
Carol x
Hi Carol. I too have secondaries to liver (and bone, and pleura). Like you I recently completed 6 cycles of taxotere, and am still on herceptin. The liver tumours responded well, the pleura, not so well, so although am on a chemo break at the moment, am realistically expecting for there to be further chemo starting again after the next scan at the end of next month. The last scan (in August), lead my onc to conclude that I’m stable for present, and so a short break from treatment would be ok-and perhaps even beneficial. I have never asked for a prognosis, but accept that the aim is to keep me as well as possible, for as long as possible. I’m hoping that the herceptin (which I’ll be on for life), may mean that I’ll be around for a while yet!
Good luck with the rest of your treatment-I’ll be interested to hear how it goes. Take care,x
Hello Elaine
I too am on a break since June, and feel a lot better. Don’t know about you but the taxotere really affected me especially from cycle 5. Had FEC before and had little problem with that. I can walk a lot further in the last month and got more energy although do get tired easily. I have Herceptin every 3 weeks which I’ll also have for life, hopefully it’ll hold the cancer from spreading further. Sorry to not know but what’s the pleura - is it lungs?
Carol x
Hi Carol-yes, lining of the lungs.Like you I found the taxotere quite challenging-but not impossibly so, and would have it again if necessary. Have to say, have been feeling stronger since the course finished-and my hair is growing back with a vengeance!!
Hi Carol
Another of the London 8! I have a small tumour in my liver but my main problem is the spread to my lungs and especially the pleura. I am on my 3rd chemo, Xeloda and have a scan tomorrow to check on progress so I’m crossing my fingers and toes as if it is effective then I can stay on it.
My oncologist doesn’t talk about prognosis, just about managing it and trying to get it stable. I still work and try to carry on much as normal but we were all talking on Thursday about the fact that even close friends really don’t understand what we are dealing with. I find it helpful not to think too far into the future but have my moments particularly thinking about seeing my lovely children graduate from university but I factor in lots of treats, holidays,days out just to look forward to.
Hope you will keep posting and let us know how you ar getting on
Best Wishes
Kathryn
Hello Kathryn
Just wanted to wish you the best of luck with your scan, I really hope it all goes well. I know what you mean about the moments thinking about the future - it can get scary if you dwell on it too much. Like you I do try to take each day at a time and do what I can while I’m well enough. Am going to Paignton on Friday for a week so looking forward to that.
Take care.
Carol
Hi Carol,
I’m another one! Diagnosed march 07 with primary bc and liver secondaries (that’s what we call being a deep-ender - straight in at the deep end!). I had FEC (nasty to me) then Taxol (do-able but messed up my blood counts big-time) with Herceptin last year. Now on Herceptin until it stops working, and Tamoxifen. I seem to be maintaining the shrinkage I got with the chemo, so far.
Of course you can join us at the next meet- open to anyone. We are by no means a closed club. Or there are general meet-ups for people with any kind of secondaries, at regular intervals. (Look out for threads about ‘Cinderella’).
Hope you and Kathryn both get good results
love jacquie x
Hello Jane
7th year is excellent. So pleased to hear you’re doing so well. Gives me more hope. Know we’re all individuals and try to keep as positive as I can, and must say now I’ve joined this site I somehow don’t feel so alone. Family are good but no one seems to understand your feelings do they unless they’re going through it.
Keep well.
Carol x
Hi Jacquie
Must be awful to have gone in at the deep end as you say. Glad you’re keeping tumours stable that’s good news. I was diagnosed with BC Sept 06 and Liver secs Dec 07 and that was tough enough. Thought after the BC treatment and going back to work I was well on my way to getting my life back but no chance!!
Anyway had 8 Taxotere which after the 5th was really tough. I can’t have Tamoxifen - not hormone positive. I have Herceptin though every 3 weeks which will be indefinitely like you. Will be glad to get scan results on 13th to see if the shrinkage has stayed! Optimistic though since my abdominal pain I started with again last week seems to have eased off for some reason.
Thanks for ‘club’ news will look out for details. I’m Wolverhampton area.
Take care.
Carol x
Hello Carol
I am another one who wa dx with mets straight off, liver, pleura and lymph nodes. I have had 6 courses of fec and am currently on Arimidex tablets with monthy Zoladex injections. At the moment my mets are stable so you can never tell what is going to work for each individual person.
I do worry that because my treatment is more subtle than the chemo that it isn’t working but the oncs have assured me that this type can work really well for some time - so heres hoping that it does.
good luck with everything
CAroline
Hi I was dx in June 08 and found out last week that I have liver secondaries. I was having neoadjuvant chemo and now have to decide whether or not to have breast surgery. Just wondered what you did Caroline and Jacquie.
I have two more cycles of FEC to go.
Fiona
I am another ‘deep-ender’. Liver mets from the get-go. Funny, there seem to be far more women in this situation than the 5-10% usually quoted.
Welcome to the club that noone wants to join, Carol…
Jenny
x
Hi Fiona,
I started with a Wide Local Excision (WLE/lumpectomy), was due to start on neo-adjuvant chemo, then discovered the liver tumour. They said the treatment would be exactly the same, as the chemo that targeted the breast cancer cells which they thought might be in my body, would also target the bc cells in my liver. The chemo was successful in shrinking the tumour, and it has stayed the same size since being on Herceptin and tamoxifen since January.
Are you saying you haven’t had any breast surgery yet?
Take care
Jacquie x
Jacquie
Yes, I am having chemo first, and have had 4 of 6 cycles, it now looks as if I won’t have an op at all if hormone treatments keep my breast and liver tumour in check. Just wondered if anyone else had been in the same position.
thanks
Fiona
Fiona
I havn’t had any surgery at all my cancer presented its self by way of a pleural effusion and a lump in my neck. I then had 6 fec followed by Zoladex and Arimidex. I was told that surgery wasn’t an option for me. I didn’t have a lump in my breast to start with. I have one now but the oncs are continuing with the same treatment
Caroline