Hi everyone
I haven’t been on the boards for a while (so many new names!)
Anyway 2 weeks ago after a course for Vinolberine I was given fab news that my liver tumors had reduced and stabilized, the report said the 3 tumors where too small to measure…they where never that big to start with, but had started o affect my LFT. I went off on holiday with a peice of mind, but started to feel unwell while I was away, When I came home last weds i went straight to the Royal Marsden (my hospital) had various blood tests and scans done, I got all of my results today and my LFT have gone through the roof, TM have risen a little to 100 and the bombshell news that the whole of my liver is now affected with mets. I’m in total shock, I was expecting the worst being new tumors or old ones grown, but never in a million years that my cnacer has spread like wildfire through my liver. I have had it in my liver for 3.5 years and kept it stabilized with Taxortere, Letrazole, I also had RFA vinolberine and am on herceptin. The Proff has recomended that I go onto weekly taxol, as I dont have much time for trial and error…he also said that I can have gemsitabine along with it but with the condition of my liver, its likely to make me feel very poorley, I’ve become so far behind with treatments and stuff I just dont know what to do, Has anyone out there had tax/gem with good results? Also the treatments I have had so far have been FEC, Taxotere, carboplatine, Vinolberine, herceptine, tamoxifen and letrazole…I cant tolerate Xoleda - so my options are running thin. Any one else had such rapid progression and had good results with a certain chemo, would be very greatful for any advise or opinions.
Thanks
Amber x
Hi Amber
Sorry to hear you have progression to your liver again… i just wanted to say… i am in the same boat as you with regards to treatment…I cant tell you any info on results from this chemo combo as ive been told its a fairly new one at my hospital (only 2 patients on it - i am one of them) There is another thread on this you might like to read) - I am on my third cycle and i am also interested to hear of sucessful treatment with this combo also. I should be having a scan soon so maybe i can tell you more then. I have spread to lungs, liver and bones.
My LFT’s have improved whilst on this regime, i havent felt too bad generally, infact i found this combo easier to tolerate than taxotere which i found the worst. I usually get the side effects 2 days afterwards really where i ache and feel very tired mainly. I get nausea and headaches and the weirdest thing is really i get a shaky feeling inside my stomach, hard to explain. Then there is the hairloss. I am using the cold cap but my hair is still thinning… but all in all… its do able. My platelets and white cells have also suffered on this regime and i have had to miss a couple of weeks treatment in order for them to recover. They now give me GCSF injections to support me - maybe you could ask for those if it makes you feel poorly?
My stomach is also swollen from the liver spread and i was in quite a bit of pain before i started this chemo and i’m happy to say whilst i still have some swelling, the pain has eased and i hope this is down to the chemo shrinking the tumours that are making the capsule round my liver swell.
The good thing for you is that in see your being treated at the marsden… you are in good hands there… when do you start this chemo? when you say you started to feel ill… what were your symptoms?
let us know what you decide and i hope you dont feel too poorly…
take care
Love Jackie
x
Amber,
Im sorry if this is intrusive but I think I met you in the MDU a few weeks ago - before you went on holiday, you only had one cycle left and were trying to squeeze it in before you went. I just wanted to say im so so sorry to read your news, will be keeping my fingers crossed that you find a treatment that works and sending you all the good vibes I have.
much love, cesca xx
Hi Amber
sorry to hear of the spread in the liver. It is absolutely amazing how fast the little so and so’s can spread. In Feb this year my liver was about to give up. I had 15 taxol and 8 avastin tumours shrunk 50% I am now an avastin every 3 weeks but will return to tax after the summer. That in itself is a laugh what summer! Can you have lapatinib?
I have presumed you are her2+ I hear so many good things about the Marsden so I am sure you will get the best treatment.
Sorry I am not much use, just want to wish you well.
Love Debsxxx
Hello girls
it looks like I am in the return to chemo club as well as my onc called me this evening - when I was on the train, arrggggh- my markers have jumped alot in the last 4 weeks (from 33 - to 84), just went yesterday and had them done. He is suggesting I should probably have a scan in the next 4-5 weeks and then we will go from there, LFTS are looking a little wonky but not too bad. Its very hard and I think I will call tomorrow and get an appointment for the scan.
Amber I am sorry you have had this shock - i thought i was prepared but I wasn’t and you must have been in a right state coming back after 2 weeks and finding this. As Debs said I am sure you will get the right treatment there.
Anyway best to all - not a great evening for me either.
love
cathy
Hi Katherine M
I’m sorry to hear that you will be back on the chemo.
You state that your markers have jumped from 33 to 84 in the last 4 weeks. Do you know the name / abbreviation for these markers and /or their normal score? I would be very grateful if you can give me this information. My markers (S-ALP) is 80. My GP says this is nothng to worry about as long as they are below 100. I just wonder whe have done the same blood test. I just seem to be at ease with his opinion on this.
take care.
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ca-va
Hi Amber
I’m so sorry to hear that your little bit of peace has been shattered so quickly. I’m sure the Prof will be choosing te regime that’s best for your liver right now and I hope that it goes smoothly and gives you some good results.
x
I just DON’T seem to be at ease with my S-ALP markers rising from 56 to 80 in 6 months.My onc says it probably has something to do with me going on Arimidex, but this feeling that there i something wrong drives me mad
Please, anybody who has their markers measured, give me a hint.
ca-va
Hi Cathy
I’m sorry to hear your news too. That must’ve been a shocker of a call to receive on the train! It is so alarming when things change so quickly. I wish you all the best with your scan and treatment.
x
Hi ca-va
Sorry can’t be of help - the tumour markers I have measured are not the same as yours - CA15-3. No idea why, perhaps it’s got something to do with the individual expression of my tumours (hormone negative & Her2+).
x
Hi ripley
My tumour was hormone positive and HER2neg, so I suppose you are right.
Thank you anyway.
Ca-Va
Hi ca va
I think you are referring to a liver function test, the markers i was referring to our CA15 3 . mine have jumped, more than doubled in 4 weeks when they have been holding steady. My liver function tests are at top range of normal …
cathyh
Really sad to hear the news from you both, Cathy and Amber. I know when I had a lot of progression in the liver in the spring over a relatively short time, it was very frightening, Amber - my liver was full of “multiple tumours”. Never dared ask how many as was worried he might say too many to count. However I have responded very well to xeloda and tumour markers have fallen from over 400 to 21 (ie within normal range) - really hope the weekly taxol works similarly for you. I had weekly taxol last year and certainly found it easier to deal with than FEC though did get tired towards the end - continued working throughout though.
And Cathy - so disappointed for you though I know you posted to say that you half expected this to happen. Never the same as actually happening though. Receiving the news on the train is hardly good either! Hopefully you can get a scan quickly and then know what you are dealing with. As we have said so often in the past, the waiting and not knowing is awful. The fact that your LFTs (though going up) are still within the normal range is a good thing to hold onto though. Means there will be no problems with going on a full dose if chemo if need be.
Ca-va, I’m also referring to the CA15-3 tumour markers which tends to be for me what indicates progression. I think the normal range for S-alp is upto 90 and as Cathy says it is one of the Liver Function Tests. Many treatments (chemo and hormonal) can have an effect on liver function, so providing all else is looking ok I would be reassured by what your onc is saying - it is still (though rising) within normal limits. Easier said than done though - maybe you could find out what you CA15-3 markers are (anything under 30 is pretty good!) - and that might give you added reassurance.
Kay x
Amber - so sorry to hear your news. I can understand (I think) how you are feeling. I had a 9mm liver met away from anything important and suddenly 3 weeks later was jaundiced and very ill.
Ihave had gem but that was with gem/carbo combo which worked really well. My CT scan in june showed all tumours shrunk in lungs, and armpit and the little 9mm tucked away at the back of my liver had shrunk from18mm. The bony ones were about the same. However, the one that had squashed my oesophagus had grown - well I knew that as I could only swallow liquids.
3 weeks later, I suddenly turned yellow and a cluster of lymph nodes had grown and blocked my common bile duct and upset all my LFTs etc. I ended up having an operation to put a stent in but via my skin and liver as the gastroscope would not go down my oesophagus. It took 3 weeks for my LFTs and bilirubin to come down to a level where I was well enough to start weekly taxol. I’ve only had 1 as been away this week and been quite ill on it. Only managed to leave the house on day 6!!! Wondering if they gave me dose based when I was originally diagnosed when I weighed 23kg more and was 3 cm taller.
I’ve had 2 referrals to the Prof at the Marsden for the lapatinab trial and got refused both times but the Prof is lovely.
I’m now on my last option of chemo so hoping that the taxol will work on my liver and swallowing but may ask to be referred back to the Marsden to see if he has any other options so understand how you feel about lack of options and what goes with it.
All the best - Dasiypink is doing OK so hopefully you will as well.
Kate
Hi kate
nice to see you back, I have also just had a couple of weeks stay in hospital, but had been following your thread, you had us all very concerned there for a while.
Kate have you ever asked for avastin as Debbie did in Cornwall to try and stabilse you along with the taxol. Any oncologist has the right to apply for this for you under extreme circumstances. Just a thought you’ve maybe been there.
Diane
Hi Amber and Cathy
I’m very sorry to hear your news it really sucks. I hope in both your cases that chemo again will sort the little b… out.
Amber it sounds like you are in the best place for treatment other threads have said the Marsden is the place to go.
Just sending my support to you both
Beli x
Hi Amber and Cathy
So sorry you are both facing more progression, more horrible treatment. Doesn’t it all just stink? I’m waiting for a CT sacn to check out how much my regional tumours have grown and if major organ spread still fingers crossed on that one which I know makes me sort of ‘lucky’)…expecting to be back on b***y chemo myself in a couple of weeks, probaby weekly taxol.
Jane
Hi All
Oh! boy it really doesn’t take much to start the old worries gnawing away at the carefully husbanded veneer of ‘piece of mind’ that I try to cultivate. Like some of you, I too have been doing well in keeping my liver tumours at bay but your post is a timely reminder (if any of us were getting complacent) that things can change for us very fast indeed. Having said that, when the treatment works, the transformation is something just short of miraculous.
I do feel for you, Amber, Cathy, Daisypink, back on chemo for liver spread (and of course you too Jane RA, different problem but a return to chemo none the less) - I will be looking for those posts that tell me you are getting your tumours on the run and fast and feeling for you all every step of the way.
Hang in there girls!
Blondie