OMG 2 new brides this week...how exciting for you both!!!......Im really sorry that you both have liver worries though....Just to let you know you are both in my thoughts.....I really hope that you both have pain free days and are able to celebrate properly ............I know you both must be worried about things but how wonderful to celebrate your love in marriage. with love Pamxxx...we will want full details!!!!
im a newbie and thought i would jump in on this subject. so sorry youre having these problems! with regard to the liver issue my son has primary schlerosing colangitis(hes 16) which basically means his bile ducts get blocked. when this happens the whites of his eyes yellow up and he has to have blood tests. i would suggest that you have this done just to check the function of your liver. peace of mind if nothing else.
I've just posted this on the bone mets thread but thought it would be useful to mention it here as it's a great news story.
I had my chemo today and while I was there I got chatting to a lady who was there with her husband, who's having treatment for Pancreatic cancer. The lady herself had bowel cancer about 18 years ago and was given a 30% chance of survival at that time. 3 years later she found out it had spread to her liver. They removed part of her liver, her chemo was really tough back then, but she's still here - 15 years later and now in her 80s! Miracles do happen. Keep the faith.
I got a 2nd opinion after feeling my onc had written me off. Their advice was opposite to his and I've started treatment today and feel much better about things after months of worry. I'd say it's worth getting a second opinion, even if only to put your mind at rest that you're getting the most appropriate treatment.
Hi Gill, I have been following your progress as I am very concerned about the level of support you seem to be getting from medics particularly the very grim prognosis. When I was initially diagnosed I was petrified of the outcome as I had lost my young sister and close childhood friend only eighteen months previously to breast cancer on the same day. The whole BC team who supported me were very good at lifting my spirits. Firstly no one can say for sure when anyone will die not even your oncologists. What you do need is to know what your course of treatment is what drugs are available to you and how to access them. There are a lot of very good targeted drugs available which although may not cure will keep you alive for a very long time and with a good quality of life. How do I know this, well I met many woman during my treatment who had secondary diagnosis at the beginning over ten years now and they are still living and bringing up their family. Some are even working and have young family. So there is light at the end of the tunnel.
When I talk of my sister and friend what I ommitted to say was that they had been diagnosed as young woman and therefore lived a good life before recurrence. Also when I reflect on their situation they had other medical issues which impacted on their treatment plan etc. We are all individuals and we all react differently to our treatment plans etc.
Please, please ensure that you have an advocate whether it be family or breast care nurse to support you at treatment and consultations. Push for what you need to stay alive for your very young family.
I am thinking of you and hope for the very best outcome and I am sure it will be once your medical team get your treatment plan up and running and the medication starts to kick in.
Take care. Anne.
I have put for you below the links to a couple of BCC's publications you might find helpful.
I've just been catching up on this thread as I flit on and off the forum. Gill I think what your Onc has told you is awful - you have so many treatments still open to you! I know its really hard but try and stay positive. I had double whammy diagnosis too - only delayed enough that I'd had MX by the time the blip on my liver was confirmed as a secondary, which meant I had to wait before I could start chemo. I have a 2 year old too and believe it or not I envy you your baby as we had been trying and failing to get pregnant for a year when I got cancer instead!!
It is so easy to let all the what ifs weigh you down but try and enjoy everything you can do, and keep yourself busy, the quiet times are when everything seems too much. Although that shouldn't be too hard with two small children and a wedding to organise! Thinking of you and sending you lots of positive thoughts xxx
Good grief - nobody can possibly tell you what your prognosis is. Find the right treatment for you and we can go on for years and years on the one option. And then by then, hopefully there will be something else out there that will also work for you! It upsets me so much to think they aren't offering any hope. There is always hope. There are ladies that have gone 10 years just on the one treatment! xxx
I'm sorry to hear what your oncologist has said but there are so many cases of them being proved wrong I really hope you are one of them. Sometimes a figure seems to be plcked out of the air and then just causes so many upsets for everyone. When I was at my appointment this week the doctor said that there was a lady on the same treatment as we both are on that hadn't been very well at all but was now doing really well with a very good response, so there is hope you. Also many ladies on here have had large tumours in their liver which have responded well to treatment so it's not always down to the size of the tumour that counts. Wishing you good luck and apologies if this comes across a bit disjointed I'm on my 'coming off steroids zoned out day' which means I'm a bit befuddled!
Hi Gillig...Ive been following this thread but havent posted because I have not had the same chemo as you...neither do I have liver mets(as far as I konw!) or such a young family......however I have had experience with vertebral mets which i thought id share......
I was in my 40s when diagnosed with primary BC in 2005. er+ve, her-ve.
In dec 2010 I developed back pain when doing zumba....It only settled a little over a couple of months and so I had a bone scan followed by MRI and CT. It showed severe collapse of T4.(it only appears a couple of millimetres thick).....and displacement of spinal cord.
I had emergency radiotherapy for 5 days, started on a bone strengthener, and changed hormone treatments.
There were concerns as to whether my back was stable (but as my onc said no ones going to test it out for you!). I never had any problems with numbness or weakness in my legs, although some altered sensation in my back.
I swapped treatments to capecitabine after a year and have been on it since feb 2012.
My back is still stable and essentally pain free.......although I do have to be a bit careful with it and try not to lift or carry heavy weights...especially through my shoulders.
I really feel for you with the demmands of young children...but wanted to reassure you that there is hope that radiotherapy, chemo, can hold things stable.........best wishes Pamx
As you have been diagnosed with the 'double whammy' of primary and secondary BC at the same time I would imagine that your biopsy from the primary will be what your treatment is based on, therefore a second, liver biopsy wouldn't be needed. Receptor status can, and does, change but usually over a period of time. I have gone from HER2- 11 years ago with my primary, through 6 years ago with a local recurrence and bone mets to a change to HER+ last year when liver mets were diagnosed. I am still ER and PR+ but I am glad that I asked for the liver biospy as if I had just received hormone treatment my liver mets would not have all responded. I hope that when you start Taxotere you can cope OK, I have just had my second cycle (with added Herceptin and Perjeta) and am happy to answer any questions you may have. You must be all over the place at the moment with young children, a recent diagnosis and a wedding! Do ask us anything you want, someone will usually have experience of it. As to liver surgery I expect they would like to see how the cancer responds to chemotherapy first, which can give very good results, and then consider either surgery or RFA (radio frequency ablation) rather than opt for a surgical treatment first. Good luck with everything.
btw I have just re-read your post and see you started Tax yesterday. As a warning make sure you take your second dose of daily steroids before 2pm as you will be wide awake at all hours! A tip I learnt when I had FEC 6 years ago. Also, once the biopsy results are back they can add in Herceptin if you are HER+ and Tax is a very powerful chemo regime in its own right so I hope you get a very good response x
Good advice from Helen's post below... yes the liver is amazing, it can recover surprisingly well when we have an effective treatment.
And Gill... I can't begin to imagine how you are coping with your very young children - I just hope that you have enough support in place, from family(?), friends, hospital, BCC (there is a helpline but it's not specifically for metastatic bc - though there are BCC resources for younger women and I'm sure you are in that category). And Macmillan c support, maybe your GP if you have a good relationship with him/her already... there are also counselling options, sometimes free of charge, by people who are trained to support cancer patients.
Which chemo are they giving you?
Hi all, I agree it's good to have a separate liver mets thread - I had "only" bone mets for 3 years then liver mets were found (that was in 2009 and I'm still around). I don't follow the "bone mets" thread because I think we liver/bone ladies (some have lung mets too) have different issues from those who have "only" bone mets. Not meaning to be exclusive but that's the reality as I see it.
I'm on capecitabine too - 2nd time around! It was my wonder drug for 2 years, brought tumour markers well down, and I had a good quality of life except for hand/foot syndrome which is why I asked for a break, during which I've had another IV chemo (eribulin) and two hormonals. Just finished cycle 3 of cape - tomorrow to oncs for scan results/bloods.