Nothing's working

[Guest user]

Sorry for not replying sooner, I was away for a few days. You've gave me some helpful advice Alison & Lemongrove, I've to see my GP tomorrow ( A home visit no less!!!) then consultant again on Tuesday, so will let you know what happens.Thanks again for all your support ladies x

[Tawny]

Hi Lin6
I don't post on here very much, but find myself in a similar situation to you. I was diagnosed with liver and bone mets in January 2010. I had 6 cycles of Xeloda with partial response in my liver. Letrazole kept me stable for a good year (in fact, the liver mets disappeared at one point) and then stopped working. Tried extamestane, but didn't work. Progression in liver and bones at the end of this year. Went on Taxol, but found out 6 weeks ago that that hadn't worked and that there was further progression in liver. Am now trying a hormone: Fasoldex along with Zolodex and Zometa for my bones. I don't really know what happens after this. I'm not too keen on knowing exactly how big or many my liver mets are, so I asked the onc how my liver function was, and he said it was ok. I take solace from the fact that I feel generally quite well, all things considered. The progression in my bones has led to anaemia and platelet problems which didn't help me on the chemo front as treatment was interrupted so often that I only had one full cycle. I felt very low knowing that it hadn't worked, although I had been expecting a negative response. I've picked myself up since then. What is one to do? I get a lot of support from my local hospice (I am lucky enough to live near a very large Marie Curie Hospice in London) and I'm starting hypnotherapy and massage along with seeing clinical staff. I find them very helpful and kind. I wondered whether you were having any of this type of support? Some people are afraid of the implication of a hospice, but they are hugely experienced in drugs, pain control and patient support. I also have fortnightly visits from my local palliative care team. Again, we talk through my situation and they can liaise direct with a GP on the medication front. I've also restarted counselling. This may not be for you, but I would encourage you to investigate what help might be on offer. Forgive me, if you have already explored that avenue. I wish you all the very best with future treatment. Please feel free to PM me, if anything I have written is of interest.

Alison x

[Lemongrove]

Lin6 I'm so sorry to read about your experience. One of the many things that make cancer such an appalling disease, is that patients frequently have to endure all the side effects of horrible treatments without any certainty that it will work - and the disappointment when it doesn't is so upsetting.
As you have been on Tamoxifen, I'm assuming that your cancer is oestrogen receptive. On that basis I have a couple of suggestions.

(1) Are you sure your cancer is still oestrogen receptive? Cancer can and frequently does change it's receptor. If your cancer has become Her2 positive, that might explain why the drugs you have had, have not worked (because Her2 cancer requires Herceptin or Lapatanib). In order to discover whether your cancer has changed it's receptor your doctor would need to perform a biopsy of one of your mets. If you have any infected nodes this is a quick painless procedure - but a biopsy of the liver or bones is not painless or quick (but still worth it if it means you get appropriate treatment). My cancer changed it's receptor (it was strongly ER+ and became strongly Her2+), and the two Professors at my hospital said this is "incredibly common". I'm providing a link below to more information about this.

(2) It appears your treatment went straight from Tamoxifen to chemotherapy. Have you thought of asking to try an endocrine therapy such as Letrozole or Exemestane ? It's possible that your doctor didn't bother with endocrine therapy because they thought the failure of Tamoxifen indicated that your cancer was not responding to oestrogen deprivation. But endocrine tharapy works in a different way to SERMS, and people who have had no success with Tamoxifen frequently have success with endocrine therapy.

(3) Cancer that doesn't respond very well to systemic treatments does often respond well to radiotherapy (mine is like that). If you have too many liver mets for Cyberknife, you could discuss Tomotherapy. Tomotherapy is not quite as precise as CK, but it can treat many more mets, and bigger mets. The other thing you could discuss is radiopharmaceuticals.
Hope these suggestions help.
Link to study concerning cancer changing it's receptor
http://jco.ascopubs.org/content/early/2012/06/18/JCO.2011.37.2482.abstract

[Guest user]

HI Horsie, yes I think Piclitaxol will be available to me, altho I have very bad veins now. I've arranged for the MacMillan nurse to come tomorrow to help me broach the subject with my sons. I agree that if yours are much younger best to just give little bits of info on a need to know basis.

As each treatment fails I fall further down the spiral, husband struggling to cope as well. We are very angry with each other which makes me sad.

[Guest user]

Hi Angelfalls, I did ask about Radio Frequency Ablation, but they will only do this if you have 3 or less tumours in the liver, and I have more

[horsie5050]

Hi Lin,

I am so sorry that you are going through what I am going through as well. There are other treatments avaliable so don't give up the fight yet. I notice that you havn't done Piclitaxol yet - one to try. I too had a liver biopsy done 2 weeks ago, jeez it was sooooo painful-awaiting results. Have you asked your Onc about trials for you to be put on?
Angelfalls makes a very good point about RFA / cyberknife, have you chatted to your Onc about this route? My Liver surgeon would not do a liver resection because I have bone mets, but yours may be a bit more forward thinking???
My 3 children are much younger than yours, they know it has spread to my liver and bones and that I am fighting every day, but...I have never had the terminal cancer conversation with them.. I won't until all treatment has failed and it's an end of life job.. no point in distressing them, and all 5 of us wallowing in self pity and distress...
My heart goes out to you and I hope you can start a super-new fab treatment soon. hugs to you..xxx

[Angelfalls]

I don't have liver mets, so know very little about their treatment. But over the years, I've read of women having liver resections and / or radio frequency ablation and / or Cyberknife for liver mets and wonder whether these may be options which you could explore, if you haven't already.

I know how scary it is when treatments fail one after another and any additional options we can add into the list have got to be worth asking about.

I really hope the next treatment, whatever that may be, will be your magic bullet.

[Guest user]

I have asked that herbgarden. They tried to get a biopsy last year which was also unsuccessful & very painful. I'm not keen to have this done again unless its under General Anethesthetic

[Guest user]

Many hugs ...the situation we all dread...and good luck with your current treatment.......If this doesn't help Is this a situation where it woild be worth discussing the possibility of a biopsy.....just incase this may guide an alternative treatment option? pamx

[Buffy3]

Lin, am sorry to hear that your treatment plans havent been working. I just want to send you a big cyber hug. I have bone mets diagnosed July 2012 but havent had any of the treatments except tamoxifen which didnt work for me. I hope the oncs can find you a treatment plan that works for you.
Sending you love
Mel

[Lucy_BCC]

Dear lin6

I am sorry to read that you are having such a difficult time, our helpliners are on hand with a listening ear if that would help? Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

We also run a secondary live chat session which you are welcome to join on Tuesday evenings and here is more information:

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk

Take care

Lucy

[Guest user]

Since being diagnosed with Stage IV breast cancer (liver & bone mets) in April 2012 Ive had Tamoxifen, Docetaxol (2 cycles), Capcetabine (6 cycles), Venorelbine (1 cycle) and none of these have been successful in either stabilising or reducing the liver tumours. Now I've to wait two weeks to see if its the Venorelbine causing the raised bilirubin & Alk phos before they will do anything more. Meantime if I get jaundiced I've to go straight to hospital, possibly to have a stent fitted. I feel so uncomfortable across the liver/abdomen and totally pissed off at this situation I find myself in. I've got two grown -up sons 25 & 21 the youngest still at home. I need to start telling them a bit more about my prognosis but dreading it.