Liver mets - please join in

Gail so pleased you are going home, but no packing and furniture moving please! Really hope the chemo and letrozole works.letrozole worked for me for about 18 months before progression to lung mets. I have been on exestemane/everolimus cpmbo for 5 months and last scan showed improvement in mid and lower spine and reduction in liver mets.I have had the dosage lowered because I was having really bad se’s so have had a scan on Friday and get results Monday.I am really hoping that it is still working…not sure what next treatment is.I have signed a form for a new trial at RM ( it is for their new research targeting treatment to each indivdual patient ) so not sure if that is the next step depending upon whether I am suitable but chemo has also been mentioned. All will be sorted next Tuesday so scanxiety weekend.

Lucina/Linda, just to say thinking about you, and hoping all goes well on Tuesday. Looking forward to seeing you at our next get togetther with Julie and Gel
Lesley X

Lucinda, fingers crossed for you. Hope your combo is still working on the lower dose. I’m under orders from onc to avoid all the heavy packing and being sent off to stay with fil on the day.

Hi everyone. Just thought I would post to see how eveyone was doing. I have my next treatment on Tuesday doxetaxel pertuzumab and herceptin. So far so good apart from last couple of days experiencing tightness and a feeling of bruising around my right lower rib cage. Hoping thats just the drugs doing their job. But apart from that I am feeling well which I am quite surprised about. Thought the chemo would floor me but then I have got 3 more doxetaxels to go so I suppose anything can happen. The onc only wants me to have 6 chemos then it will just be pertuzumab and herceptin. No scan until the end of chemo as the onc says they don’t need to and last time my bloods were good and liver function normal so I suppose that gives them some indication how things are going. Hope the weather isn’t to hot for everyone. Its better than rain but a bit to hot for me so inthe shade or staying inside for me. Its the start of the school holiday so got to entertain the kids for a while. Going to the Lakes for a week during the summer, not told the onc incase she says no you can’t go. Already had a couple of weekends away with no problems and I intend to have a couple more before the end of chemo and don’t intend to tell her about those breaks either. Anyway I better go I know I’ve gone on and on (again). Would be lovely to hear from fellow liver mets girls. Take care

Hi Angela good to hear you’re coping so well with chemo. Sorry I’ve been a bit absent lately. We just moved house so I have less stairs to climb. I’m back in hospital again as looks like there is more fluid on my lungs to be drained. Will have ultrasound tomorrow to guide drain. Hope you have a great break. Sounds like a good idea.

Hi Gail. Sorry your in hospital, hope they manage to get that fluid of your lungs so you can get back and enjoy your new home. I spoke a little to soon about the chemo its floored me a little this time so having to try and take it easy at the moment. Take care of yourself and hope your home soon. x

Angela, give yourself a break. Sounds like you’re on a heavy load of treatments there. I’m currently having my fluid drained from my lung so hoping for some relief again.

Ladies can I ask what sort of symptoms you had with liver mets, I had liver cysts show up on breast MRI, waiting now on ultrasound
Thanks x

hi my symptoms were vague ,tiredness main one and looking back probably some discomfort under ribs on right side ,thought it was my thyroid but blood tests at gp showed elevated alp in liver results ,ultrasound showed mets also have cysts .My primary was 2009 FAC chemo rads and herceptin for a year clear nodes mastectomy but vascular .Have had docetaxol which was changed to weekly taxol stopped when side effects proved too much now on herceptin ,liver enzymes all in normal range now x

Thanks geordiex,
I have bloating which I put down to ibs, I am also her2 + I also had a year of herceptin, 5 years since diagnosis, I guess herceptin does not always prevent recurrence, best of luck with your treatment x

the thing is there was probably something there from the beginning and it got missed by the chemo ,my ALP was raised slightly while having chemo first time round so had ultrasound which showed cysts (harmless) and chemo can alter your liver enzymes too ,so I presume after that liver enzymes were fine even then they were normal just slightly up on what they had been ,this time however they went crazy ALP reached over 2000 at one point they are now 94 which is normal ,sometimes enzymes are normal ,think it depends on where in your liver any nasties are lying ,good luck with your lultrasound x

I have bone, liver and lung mets all small lesions was on taxol but had to be taken off due to side effects. I am now on capecitabine and its working great according to blood results which are all in normal range now. Is it possible to have secondaries in 3 places and end up with no evidence of disease At CT scan?

Also is anyone else had capecitabine if so how long did it work for you?

hi I have liver mets and I also have to come off taxol due to side effects just on herceptin now ,I would like to think it could well be possible to go into remission with secondaries in numerous places with treatment advances as they are .I’m sure there wil be someone on here who can enlighten us more x

Hi, am sure it is possible am still suffering side effects fom taxol just now as it damaged my nails and they are lifting from nail bed horrible to look at but healthy nail behind it, how long have you had secondaries for I was diagnosed in march with my original diagnosis in 2009 xx l

march for me too ,my primary was 2009 when I had FAC 3 weeks rads and 18 herceptin my nails are horrific and had really bad neuropathy kept falling over much better now ,although still not right by any means x

march this year for secondaries x

You sound similar to me with both original and secondary diagnosis what treatment you on now?? Also I have neuropathy in my hands and feet and one of the main reasons I was taken off taxol as spilt tea down myself my glands are better but still not normal hate it. Xx

on herceptin now my hands and feet not right yet ,my last taxol was 8 weeks ago,I fell over a few times had no control of my legs and nails arent good but on the plus side my hair is coming back x

I was taken off it after treatment 5 in may legs also were extremely weak so much so I could not climb the stairs and suffered badly with lack of energy, really want my hands to return to normal and am worried its permenant now, are your secondaries in you liver only ? my hair also coming back with eyebrows and lashes fully in now, just waiting on some length on head before wig comes off. Xx

once my scalp is covered I wont wear anything on my head ,I had the equivalant to 11 weekly taxols but like you very weak ,L Glutamine is supposed to help neuropathy its an amino acid ,taken while having treatment seems to have helped some people ,my liver is where my mets are ,a couple of miniscule dots in lungs but he’s not worried about them ,and taxol even though I didnt finish the regime gave me an iver 50% positive response which he was really pleased about .My ALP was 2000 at one point the highest it should be is 140 x