Hi ladies
Well, I’m joining this thread as well. I was dx with liver mets (bone mets dx at outset)a little while ago. I start chemo for that on Tuesday, this new one that I can’t think of the name of just now. As I’ve got a kidney infection (started Thursday) I was hoping chemo would be deferred but no such look. Day 1 on Tuesday, Day 8 the week after and Day 22 two weeks after that.
It’s good to read such positive comments.
Good luck to us all.
Maureen xx
Hi Granny S - so sorry that you’ve joined the “liver & bones” gang but glad you’ve come back to the forums. I’m at Christie’s on the 3rd in the afternoon for my regular six-weekly outpatient appointment - will be in the cafe (probably eating chips . . .) at about 12.30 if you’re around then! Would be lovely to see you. Keep strong! Marilyn x
Hi, I am new to posting - have found myself reading these forums often. I was dx with TNBC in jun 10.
had mx had 7/30 pos nodes. done fecT & 15 radio therapy. In March 11 bone pain. DX with bone cancer to sternum & Liver & lymph glands. Startednew chemo.Gem/cist mix. Good results half way through. Now Cancer in Liver is regrowing.
Not Sure what to do, another Chemo?
Find it hard knowing who to talk to about the emotional issues in my head - thats why im on here ? have 2 small boys 6 & 9?
Hi desperatemum - so sorry to see that you’re having some progression in your liver - it’s always such a shock, whether or not we’re “prepared” for this, especially after all the treatment you’ve been having. We all have such a varied response to our treatments, and there are lots of other chemo combinations for your onc to try with you, so hope he or she is able to reassure you and set up a new plan of action soon. You know we’re always here on the forums for you to talk to about how you feel and how things are going for you, but you might want to speak directly to someone about all this - I can heartily recommend the BCC helpline (number at the top of this page). Sometimes it’s just easier to speak to a “total stranger” about our anxieties than it is to speak to our loved ones, who we worry will be upset. Sending you love & strength - xx
Hi desperatemum and welcome to the BCC forums
In addition to the help you have here please feel free to call our helpline where you can talk your concerns and fears through with one of our team as Marilf has suggested, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000 (BCC phone lines down at moment so watch for an update hopefully will be sorted asap)
I am posting a link to the BCC secondary information page where you will find information and support ideas which I hope you will find helpful, the first link provides some information for you regarding support for your children too:
breastcancercare.org.uk/secondaries
breastcancercare.org.uk/breast-cancer-services/someone-talk
Take care
Lucy
Hi, just wondered if anyone had been in a similar situation as I am currently freaking out a little bit 
Have just had my sixth Taxotere for liver/bone mets. Scan after 4th chemo showed complete stability of disease and tumour markers had dropped from 1945 to 880. After 5th chemo they had dropped to 797. Asked what they were last week, whilst in having my final chemo, and they are 813! I know it’s only a tiny jump in the grand scheme of things but I was so hoping for another drop and certainly not a rise, even a small one.
Have been told I will be having another scan in five weeks time to see what’s happening, am going onto Femara for now but onc seems a bit pessimistic that it will do a lot for me and mentioned Taxol - is there really any difference between Taxotere and Taxol? My feeling is that if the Femara doesn’t do the job I would prefer to try Xeloda next - just wondered if anyone has had similar experiences and if I am panicking too much about the marker?
Lesley xx
Hi Lesley
If you would like to phone the helpline here the staff will explain to you the difference between Taxol and Taxotere. Lines are open now until 5pm tonight. Calls are free, 0808 800 6000.
Take care,
Jo, Facilitator
Thanks Jo, have had a chat with the helpline which has helped explain a few things.
Still wonder if anyone on here has changed from Taxotere to Taxol and/or anyone has had good results from another attempt at a different AI after chemo.
Lesley xx
Lesley
Don’t have any experience with Taxol but just wanted to say hi. Sounds like you are maintaining stability, although I know how easy it is to get freaked by TM’s even when, as you say, it’s only a tiny jump. How are you feeling in yourself?
Laurie x
Hi Laurie, thanks for replying. The helpline (and the nurse at the chemo unit) have both told me not to panic too much as TMs can bump around a bit and may still come down more.
I’m feeling ok in myself, just absolutely totally drained from the six lots of tax, can’t walk far or do stairs at the moment but hopefully that will start to improve soon.
How are you feeling now you’ve been off chemo for a few weeks?
Lesley xx
Hi Lesley
Drained after 6 TAX? I was on my knees after 3 and amazed you have managed 6!
My last TAX was on 18th November and I definitely found the effects cumulative. I went back to work on a phased return on 5th December but really struggled with breathlessness and tiredness and was still having to crash on the couch around 4-5pm every day. This gradually got better and on Xmas day, I managed a 4 mile walk along the canal with my family.
The breathlessness was the thing that persisted, only improving in the last couple of weeks. I’m now just about back to normal with only some residual numbness in my fingers and toes (and stupid hair, brows and lashes - but I guess that goes without saying!)
I’m just on Tamoxifen and Zometa now and was at the Marsden yesterday to get my first scan results since chemo finished. Unfortunately, I changed from my local hospital to the Marsden and they used different scanning (CT Vs Ultrasound) so it was practically impossible to tell how chemo had gone, however she said there were"No suprises" on the CT (I assume no new growth) and she’s going to call me with the results of the MDT and tumour markers next week.
Trying not to get too stressed. At the end of the day, I feel well so am trying to focus on that.
I’m sure you’ll start to notice that you are getting less tired and more like your usual self day by day.
Laurie x
Laurie, I am very inspired that you managed a four-mile walk only five weeks after finishing chemo - at the moment I can’t manage 400 yards! Hope for me yet! Apparently my potassium levels are a bit high and my haemoglobin a bit low so that would account for a lot.
I have lots of finger and toe numbness now too - that seems to have really escalated in the last couple of weeks, also all my fingernails went black and are now yellow (it’s very attractive) but they haven’t actually fallen off. Have just bought a new short wig so that will get an airing this weekend, going for the gradual transition!
I really hope the Tamoxifen and Zometa work well for you. Tamoxifen didn’t work for me BUT I did get two and a half years out of Arimidex before progression so fingers crossed you will get the same or more out of Tamoxifen. I think “no surprises” sounds very encouraging and the fact that you’re feeling really well has to be a big plus sign.
Keep in touch and take care
Lesley xx
Had a year out from BCC, i was diagnosed with bone metz early 2009 and added my liver and neck nodes to the list 8 months later.
Just wanted to say that even though at times treatment and aches and pains can be tough, there is always good days that are well worth it all. I had surgery to my spine as one vertebra had collapsed and have metal caging in place now (my attempt at being the bionic woman !) I had 6 tocletaxol, then had a 2 month break before going onto Capcitabine chemo with Lapatinib… 3 cycles in and i managed to get (nearly) to the top of Snowdon.
I am now on vinorelbine/navelbine chemo now which seems after 1 cycle and forgetting to take my pre-med on first dose more tollerable… Planning on getting to the very top of Snowdon this year.
Always try to be positive, and if a bad day comes, accept it and make the most of the good days … Big Hugs to you all xxx
Hi everyone, I haven’t been on here for AGES as have been having weekly paclitaxel to zap the liver mets, however after meeting with Onc today she has advised the tumour markers seem to be on the increase and she is going to arrange a course of vinorelbine - the tablet kind. I tried capecitabine last year and I ended up with a heart spasm!!! Just wondered if anyone had any good (not bad please) reports of the Vinorelbine??? Thanks Joanne xx
Hi Karen, what an amazing achievement - you have inspired me to make myself have more energy somehow or other - really good luck with your climb this year!!
Hi Joanne, sorry no experience with vinorelbine personally but I am sure there are lots of people who do and just wanted to say hello.
Love to everyone
Lesley xx
Hi all! This thread is 20 pages, I see, and I haven’t posted on it before… how did that happen?! Anyway, just looking at recent posts, I see mention of many different chemos and other treatments.
When I was dx with liver mets, more than 2 years ago, my BCN said “we can get good control if we find the right treatment”…Big IF! I had bad experience with weekly Taxol (paclitaxel) which didn’t work for me (by the way, Taxotere = docetaxel is a different drug, more often given for primary bc these days). But I’ve done well on capecitabine, exactly a year now. 
And there’s some very interesting research (at the Marsden, where I’m treated) that I signed up for in Dec, genetic testing of blood and tumour samples for more than 200 different mutations, to help the team develop new targeted treatments. The way forward!
Sorry long post, but it was mention of Snowdon that caught my eye. I love walking, but my Xeloda feet have their own ideas about how far I can walk these days. Yes, a climb to Snowdon is on my “bucket list”… by train!!
Oooh it’s nice when I find a thread that I feel at home on!
Have been to the lung mets and bone mets forums which are lovely but I guess it’s always my liver that I worry about the most!
Karen - top of Snowdon! That sounds like a great goal to have, especially when you got so close last time. I hate unfinished business! Hugs back at you.
Joanne. Sorry I have no experience with Vinorelbine either. If no-one comes along, you could try the US forum at breastcancer.org where there are more Stage IV women who could help you out. Just wondering if you have had a scan or does your onc just go on TM’s?
Mrs Blue. I can’t believe there is a forum you haven’t posted on either LOL! Interested to read about the genetic testing at the Marsden. Is it just for research or will they use it to determine future treatments for you?
Lesley - Waving and hope you’re OK.
Laurie x
Hi girls,
New to this website and I’m just having a quick glance at some of the comments. I notice Lesley that you mention stabbing liver pains! I think I’ve been experiencing these recently. They are very low grade and in my lower/mid right back. Are they a chemo side effect? I’m currently on number 5 of 6 doses of Docetaxel.
Diagnosed with BC and liver secondaries in Sept but with no previous symptoms. Are the pains something I should be worried about? CT results after third dose are really positive as the blighters are shrinking and TM’s are falling.
Thanks in advance
Lisa x
Hi Lisa, sorry have only just picked up this thread again and seen your post. My liver pains aren’t exactly stabbing, they’re not even really painful, more of a ‘sensation’ but at the front just under my right ribs. My oncologist has told me it could well be the chemo working but who knows? Your results sound very positive to me
Am in an awful state at the moment with severe muscle weakness in my arms and legs and can’t seem to do anything much. Phoned my bcn this morning and she is unsure whether it’s still the after-effects of Tax or whether it’s the onset of the Letrozole effects, or a mixture of both. I was nearly in tears first thing this morning as couldn’t do anything at all and it’s so frustrating. Even loading the washing machine is a major task
My latest blood test is all good, liver function all normal but the B**** tumour markers are up again, not a massive jump by any means, less than 10% but still a worry. Have an MRI next week to see what’s going on.
Am supposed to be going on holiday to Cyprus over Easter, will be devastated if we can’t go, as apart from this muscle thing I feel pretty well and really, really need a holiday so badly. I need to know these effects go away!!
Hope everyone is doing ok - better than I am hopefully!!
Lesley xx
Lesley
I had severe muscle weakness in both arems and legs for quite a few weeks (4-5) after only 3 TAX so I’m not surprised by what you say after 6. It’s incredibly frustrating and upsetting. I could barely lift the iron (honestly, I was trying!)
My TM’s are also up but don’t know by how much 'cos I forgot to ask (ignorance is bliss and all that). I’ve got an early CT at the end of the month (6 weeks instead of 12) to see what is happening.
I would imagine you would be feeling a lot better by Easter. From personal experience, I know it seemed to take an age to start to feel more energetic, but when I did, I came on in leaps and bounds every day after that.
Hang on in there!
Laurie x