Hi Lesley,
Tumour markers can increase quickly, however if the treatment works they reduce even quicker.
Alex
Thanks Alex, that’s what I’m hoping - my markers were around 20 for months after my first chemo cycle a couple of years ago so here’s hoping that happens again
How is everyone doing this week?
Lesley xx
Re: Tumour markers and a bit of a rant which goes on a bit…
I haven’t had any done (as far as I am aware) and wondered if I should insist on having them. On the one hand, it would be good to see the trend but on the other I think it would freak me out if they were going up.
I don’t have a great relationship with my oncologist and think he treats me differently as I am a nurse specialist at the hospital where I am being treated (my specialism is in alcohol / mental health and prior to my diagnosis, knew very little about BC). General opinion is that he is clinically competent, but has the communication skills of Atilla the Hun!
Example: I had my bisphosphonates last week and he came to see me to discuss why I hadn’t had my breast MRI after second FEC (hospital cocked it up)
Cons: So what happened about the scan?
Me: I turned up but the form said I was to have it between 5-26th October
Cons: But why are you having a scan?
Me: Um… You organised it…
Cons: But you’re not on the neo-adjuvant pathway. Because you’re not having a mastectomy are you?
Me: Well… I might. I understand that there is evidence to suggest that there are better outcomes if the primary is removed…
Cons: BUT THERE"S NO POINT (?subtext, you’re probably going to croak so why bother - or maybe I was feeling particularly sensitive)
It went on a bit after that with him saying that there is also evidence to suggest that MX hastens the return of mets etc and me saying, “So I have an impossible decision to make based on conflicting evidence and I’ll never know if my decision was the right one”
Ah well. Deep breath. He did organise a liver and lung u/s to see what the mets are doing after my 3 FEC. I could find out the result by going into the system but not sure that I want to know. Onwards and upwards and all that!
Glad to hear the TAX wasn’t too bad Lesley. How did you cope with the steroids? Did you feel nauseous? (I get really sick on FEC).
Hope everyone is having a good week and enjoying our unexpected little bit of summer (unless of course you’re in Scotland where my parents tell me it rains 300 days of the year!)
Lx
Rubbish about the rain in Scotland. The rain in Greenock the WEST of Scotland is 69inches a year…while here in Edinburgh On the EAST coast it is 24 inches per year…Just a LITTLE more than London! Geography lesson over 
Now tumour markers. I think they are quite useful when having chemo because it gives an indication that the chemo is working. I used to have my markers done every month for CEA and CA125 and the last ones I had done were in the thousands and rising. However my Oncologist insists that many things can cause markers to rise and she prefers not to have them taken so often.
I am going for 2 units of blood tomorrow and also my Zolidronate infusion so will be in hospital all day. I have requested a bed to lie on instead of a chair because after my hip op I find it more comfortable to be horizontal. I can then read and doze at my leisure.
Had a wonderful phone call from my daughter this afternoon. We were feeling low this morning as my OH and I were meant to be flying over to France today to visit her for 2 weeks but I couldn’t go because I was unwell. She has booked a flight to visit us in 2 weeks time for a ten day break. I am over the moon because she hasn’t been here since 2009. My parents will be even more delighted. I hope Mum recognises her. So the blood transfusions have just come in time and hopefully I will be full of beans by the time she arrives. I see a couple of parties will need to be organised. Love to all, A very cheered up Val
Laurie: your onc sounds a bit of a nightmare with no bedside manner by the sound of it - I had an mx suggested to me at one stage when I ‘just’ had bone mets, and then they suddenly decided it wasn’t a good idea after all too - really think these people should think before they speak a lot more of the time.
Val: lovely that your daughter is coming over and that you will be feeling good having had your blood by the time she arrives, have a wonderful time. Lovely to have something to look forward to
I didn’t feel sick on the steroids, haven’t been nauseous at all on either chemo but I do feel absolutely EXHAUSTED this afternoon, have had a couple of hours sleep and just got up again but can hardly drag myself around. My daughters will be in charge of cooking this evening methinks. Also feel as though I’ve broken both ankles and several fingers, they did mention joint pain after Tax but wasn’t expecting it to be quite so centralised in just certain areas, thought I’d ache all over but that’s not the case.
I’m not asking any more about my TMs until I’ve had another scan which will hopefully show that Tax is working and then the markers should be dropping!!
Love Lesley xx
Hi Val. Joking about the rain - I know it well as I’m from Edinburgh (Gracemount - they blew up the tower block I lived in until I was 8, a couple of years ago!) My folks now live in Grangemouthand I usually visit 2 or 3 times a year. Always go back to Edinburgh when I’m up and love to stand outside what used to be Thins booksellers (now Blackwells) on the Bridges where my mum used to take me every Friday after she got paid to buy me a book. Hoping to visit the revamped museum when I’m up at Xmas.
Great that your daughter is getting back for a visit but make sure you don’t tire yourself out organising those parties!
Lx
Hi all, just wanted to pick everyone’s brains and collective experience. I had my first tax three weeks ago, due to have my second on Thursday (fingers crossed as was hospitalised with neutropenia for six days but that’s another story)
Anyway, just wondered if anyone with liver mets has experienced twinges in the liver area after starting chemo? I didn’t really have these before - they’re not exactly painful but noticeable if that makes sense. I am trying to hang on to the hope that they may be healing pains in the same way as bone mets hurt when they’re healing but am I deluding myself? I know one chemo can’t work wonders but just being optimistic I guess.
Hope everyone is doing ok.
Lesley xx
It’s anyone’s guess. It could be healing or just as likley to be progression. I have had liver twinges when both things have happened at different times, so don’t think there is any way of making an educated guess. I find with secondaries it’s best to keep expectations low and achievable, rather than hoping for spectacular results-the devastation when hoping for regression, and we end up discovering that the tumours have in fact progressed, is one of the most difficult things I find to handle
Thanks Elaine. Having my pre-assessment this morning so will mention it to the onc. Don’t suppose I’ll really know what’s going on until I have my next scan after second chemo, so I suppose in about 2/3 weeks time.
Hi everyone, I too was diagnosed with bone mets in Sept 2009, had radiotherapy which certainly relieved some of the symptoms then a scan in April 2010 showed tumours in my liver. I then started on Xeloda am still on it at the moment. The liver tumours are continuing to shrink and my last CT scan showed not progression in the last year. I get the usual hand and foot problems so I am now just starting to have a 4 weeks cycle 2 weeks off instead of one hoping it will lessen the side effects. Also I have had several little breaks for my holidays which dont seem to have caused any problems. So if you get a bit sick of it just ask for a little break, its great not having to swallow all those pills while you are on holiday. So all in all I think Xeloda is great, long may it continue working.
Hi Elaine
I’ve also had my first tax (day 12)now and neutropenic in hospital 
I’ve also had liver aches and just hope the chemo is kicking ass while it also thumps every other part of my body - I feel 79 not 49!
Good luck with the next one!
Laurie x
Oops, meant Hi Lesley! but hi Elaine too!
Thanks Laurie - I know what you mean about feeling 30 years older, I did too for the first two weeks!! Now on Day 23 - they’ve changed me from a Monday to a Thursday for blood test reasons - and I’m feeling really quite good apart from the stabbing liver pains, so it does get better. Just got to go through it all again tomorrow but onc has promised that I can have GCSF injections from now on
Hi Annieliz, glad to hear the Xeloda is working well, long may that continue
Lesley x
Hi Ladies, i posted on this thread a couple of weeks ago, i had extensive bone mets but was suffering from pain in my liver area so was waiting a ct scan…unfortunately found out yesterday i have multiple mets in my liver, im due to start Docetaxol in a week or so, just waiting to hear from chemo unit, feeling very scared now about the future…
Worried about the taxotere as heard the se’s can be very hard!!! i had fec chemo with primary bc and found it hard…but onc has said this chemo will be very toxic so to prepare myself, trying to look through posts on here to see others experiences with tax.
Any support and advice would be great.
Hope everyones doing ok as can be!!!
Take care Tracey xx
Hi Tracey
SO sorry to hear that you’re joining in with the liver thread but there are quite a few of us around and we’re doing OK.
Go to the forum list, scroll down to <treatment and=“” side=“” effects=“”> then the <chemotherapy section=“”> then click on the <looking for=“” positive=“” comments=“” about=“” tax=“”> and there’s around 17 pages of comments from those of us who are doing tax at the moment along with top tips, rants etc. Come on over - you’ll be very welcome!</looking></chemotherapy></treatment>
Hugs
Laurie x
So after my appointment to get the results of my liver scan (of which I am sure I have ranted elsewhere) I had a letter confirming progression in number and size after 3 FEC and a few days after my first TAX.
Annoyed that in the letter the staff grade said that he had explained the scan which he didn’t, just shook his head and said “…there are many more”
Feeling down, especially after 2nd TAX yesterday and coming to a realisation that this is my life now. Scan results, chemo, progression…
Shit day - better tomorrow…
Laurie
Dear Laurie, Sorry to hear about your recent news and that you are feeling low. Just a note to say I am sending you a hug and I hope you have a better weekend. Take care, love Val
Hi Laurie
Maybe it’s too early to tell if the Tax is working or not if the scan was only after a few days of the first treatment. Are you due another scan after your second Tax? I am sorry you are feeling so low and keeping everything crossed that things will start to pick up for you soon and that the progression will become regression.
I have a scan on Weds to see if Tax is working for me. Have had two so far, I like to think that the battering it is giving me elsewhere in my body means it must be doing some good, but who knows?
Take care
Lesley xx
Hi Laurie
Sorry to hear that you had poor scan results. Lesley is probably right that the Taxol hasn’t had chance to work yet. With my rpimary I had Taxol first that worked really well, followed by FEC that didn’t seem to do much. Not sure if this is any help but… I too am HER2 negative but ER positive, slightly.
Keep the faith, it could come good yet.
Sue x
Hi All,
Ihave just joined thread and read through alot of your posts! I wish i could comment on them all!!
I was just wondering if any of you have had breast surgery? I had a fantastic response in myliver and breast to chemo, after 4 x FEC75 and then weekly taxol with herceptin every 3rd week there was NED in liver or breast!! I finished the taxol at the end of march but have continued with herceptin and my most recent CT scan is showing progression in my breast but not my liver!! I chose not to have surgery as they said there was no evidence to suggest it would help me. My onc is having a meeting with his team on wed (11th nov) to now discuss surgery!! I feel very confused and scared because i am worried that if its started up in breast again my liver will follow suit!! I am worried the Herceptin on its own is not controlling the disease!!
Jenny xxx