Hi Maley, I don’t have much knowledge of your treatment as I have bone mets but just wanted to say I’m thinking about you. Hope this treatment goes well, and you get the answers or reassurance you want. Kxx
Hi guys, I’ve not accessed this forum until now but I’ve reached the point where I could do with some support.
I'm 40 with 2 teenagers & my primary diagnosis was in 2014, followed by chemo, radio, double mastectomy, hysterectomy & then reconstruction.
My secondaries in my liver were found in Jan 2017 after a routine blood test. My liver function has been fine & I've felt reasonably well.
Since then I’ve been on Capeceptibine, Eribulin & today I started Gemcarbo... nothing seeing to be keeping these stubborn little buggers at bay!!
It’s great to hear some positive stories as I’m starting to feel that my onc is giving up on me.
I'm off to a different hospital on Weds for a 3rd opinion, to be honest I think I’m praying for a miracle.
great to hear you're still going strong after 22 months! It's encouraging to know there are so many different drugs they can try. My Consultant did sya that breast cancer seems to respond to a change of drug.
My next scan is 3rd jan.
Will thinking of you in December
big hugs xx
It sounds like you are doing well and that your treatments have managed to control your liver met. That's such good news to hear and I hope you are able to keep positive and keep your faith in the treatments. I too have liver mets, coming up to 22months since diagnosis. I am on Exemestane at the minute with a scan at end of Dec to see if it's working. Keep positive and keep posting on here, so many lovely ladies to talk too.
hugs, Maria x
It's reassuring to know you are there, coping with liver mets too.
My liver mets are very advanced and things didn't look good in April this year when I was diagnosed, but the Consultant was quite adamant that he'd had good results with Paclitacel, even in cases like mine, and it has really helped me. Now on Capecitabene.
How is everyone doing?
So Tuesday was a very very bad day for me. Was convinced that I wasn't going to make it beyond my next birthday.
Someone mentioned Maggie's, so I went on to their website and fortunately they had a group session for Secondary BC sufferers on the Wednesday. So I went along and was surprised at what a fantastic place it was. Getting to sit face to face talking to ladies who were in a similar position to me, but a few years on gave me some hope.
My original oncologist passed me on to a new oncologist, who i saw yesterday. As I was only on tamoxifen for such a short time before my lumpectomy, she said we can't be sure that it was actually having any effect on the liver Mets. So yesterday I had a Zoladex implant done, and hopefully in a month when I am fully into menopause I will be able to switch from tamoxifen to letrozol.
If the body scan shows no more spread they are still happy to remove the liver tumour.
So now just waiting for scan.
Hi, and sorry you have to find yourself in the secondaries part of the forum. Unfortunately breast cancer doesn't like to behave itself so it throws out the unexpected. As a low grade, non aggressive (ie not HER2+++) BC your oncologist woud have assumed the growth was a cyst or similar. I know I had a shadow on my CT scan when I was diagnosed with secondary bone cancer in 2008. As it didn't grow or shrink with chemo it was thought to be a cyst. Maybe it was, but some 5 years later I was diagnosed with liver mets as well. Secondary BC can occur at the same time as primary BC and some ladies on here have had the 'double whammy' of both diagnoses at the same time. Some have also been disgnosed with secondary BC but the primary site has never been found. As I said BC doesnt always behave itself as we are lead to believe.
However, you are now speaking with your oncologist about treatment and that will be a bit of a minefield at the moment but we are here to answer any questions you might have. This can be before your appointment or afterwards, we do all understand your fear of the unknown and the main advice we tend to give is dont do an internet search! Facts and figures are way out of date and we are all individuals.
Take care and hope you get a treatment plan in place as soon as possible.
I was diagnosed in back in August with a grade 2 ER+ HER2-neg. Had the lump removed along with some lymph nodes. And started radiotherapy this week.
On the CT scan i had in when they found my BC, they also found a growth on my liver which they originally thought was an unrelated benign growth.
Move forward a couple of months and my recent MRI showed the growth had increased to 8cm. So then i had a biopsy done. Results from that today and they have said it is the secondary BC.
So appointment on Tuesday with oncologist to discuss chemotherapy.
After having such a small primary BC, I'm just struggling to understand how it has spread.
I'm only 5 days into my 20 days of radiotherapy. So I'm worried now that I will have to finish the roads before starting chemo !
I thought I'd been so lucky that the BC had been found early, so much for that 😔
Hi, and welcome to any newbies.
I have been away on holiday for a week so not responded to any posts (sorry Lindyloo) or added any advice or experiences that have helped me.
I have bone mets (since 2008) and they spread to the liver in 2013. I have had Capecitabine, which worked for 18 months then went on to a combination chemo regime of Docetaxel, Herceptin and Perjeta which worked for about 14 months (6 cycles included the docetaxel element then the following ones just the H and P) then Kadcyla which didn't work (phew, what a long list but it's not been as bad as it sounds) I have just had a scan after 8 cycles of eribulin and I know only show one liver met that is continuing to shrink (I had several at th start of eribulin) and bone mets are stable. I am very tune in to my LFT results especially the ALT, AFT and bilirubin figures! Sometimes they have been very high and I know my liver is under stress from the disease or sometimes the added stress of dealing with a glass or two of wine! Currently all are in the low to middle figures of the normal range which is why I suspected my liver met/s had shrunk. I also know that you can generally still have chemo as long as the figures don't go three times over the maximum of the range. I had this a few times when on Cape and had to have an extra week off until the figures reduced enough. These were the only times I felt my liver was being stressed and felt sort of 'heavy', the only way i can describe it. Once this was due to some heart medication that I was put on by a cardiologist which sent the figures through the roof and I felt so unwell. I now see a cardio oncologist to make sure there's no clashes with the different meds I'm on as I had heart damage after having FEC in 2008.
Hope all are coping well with the treatments and the side effects are minimal.
Hi there I have liver, lung and bone mets, dx Dec '16, had fulvestrant + trial drug then Cape but they didnt work. But- good news, I am on paclitaxel and after 9 sessions showed all responding, with 1/3 to 1/2 shrinkage. xxx
I am not completely sure that this is correct but I seem to remember worrying that I was having 6 x FEC whilst other ladies were having 3 x Fec and 3 X Tax. I think I was told at the time that the T is added when there is lymph node involvement. Hopefully someone can answer your question a bit more professionally than my fuzzy recollection.
Mine were high initially which is how I found out in the first place, they are gradually coming back down to normal now. There are number of LIver Enzymes but the ones they check are ALP (which should be approx under 115ish) and ALT (which should be somewhere under 50ish). I say 'ish' as the norm varies slightly from lab to lab. I believe, and I am no medic, that they raise when the liver is under stress and is an indication that liver cells are dying. This is only from stuff I have read up on the internet as I'm one of these people that needs to know everything that is going on in my body so I'm fully equiped when I see my oncologist. I think I drive her crazy, but in a funny way 🙂
I'm 40 so in my eyes still quite young. Certainly not the way I had hoped to start married life. Number 4 chemo tomorrow. Its werid why some of us are on 6 x FEC and some of us are on Tax. Is there a reason for this?
Evening Ladies, I was dx original with bilateral June 2015, double mx and recon followed by 6 rounds of FEC-T and told there was very little chance in a recurrance. Came back from honeymoon in May with stomach pains, several tests and scans later got told it had come back with a couple of 2cm lession in my liver. I was mortified and still am. Have had 3 x Tax, Herceptin & Perjeta. Had halfway CT scan results last week hoping that the treatment had done something. Was told, by a different oncologist than normal, that my bone cancer was healing well. I didnt event know I had bone mets! Also told there was a 3rd small tumor in my liver which they suspect was there all along as well but grew in between my initial CT scan and starting chemo (had to wait 3.5 weeks as had to have a port put back in and then wait a week for it to heal). All very scary and a massive curve ball to me and my husband. He seemed positive that treatment was working as it was showing the healing bones, just was hard to share in his optimisim. Does anyone else monitor their liver enzyme results? I'm obessed with checking my numbers, but not sure whether they mean anything or not as mine are coming down to almost normal but CT scan shows no reduction in size?! Also, does anyone else have bloating and pains in their liver. The pains have progressively gotten worse with each chemo, its not there all the time but comes and goes, like a dull ache or a twitch at times. I worry as it should be getting better not worse. My onocologit didnt seem too concerned with it but I am. Anyone else have this? My initial pains went after first chemo, but then they feel like they are coming back and I worry that the treatment is not working. xx
I was diagnosed with Liver and Bone met at the same times as my primary in Janurary 2016.
I have had Fec which shrunk all mets and then lumpectomy. I was on Tamoxifen and Zometa until a recent scan showed slight progression when I was move onto another hormonal.
I often wonder how many ladies are out there with liver mets and uplifting stories to share that read this site but don't post.
Its hard but we are LIVING with this.