My wife has recently been diagnosed with secondary cancer in the liver. The liver biopsy revealed that the primary is in the breast.
In terms of treatment, she was immediately started on Paclitaxel.
The liver biopsy also showed that she is HER2 positive (3+), so last week she was also started on Herceptin.
We’ve also had a breast biopsy, but are still awaiting the results on that one.
I guess there are 101 questions, but I’ll start with:
Has anyone else started from this position ?
Appreciate we’re at Stage 4, but what can we expect from here ?
What do we need to be asking our consultant ?
Appreciate there’s loads of info on here, so happy for you to point me to other threads if it’s covered elsewhere.
Hi, and welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good support both for yourself and your wife.
While you are waiting for other forum users to reply I have put for you below links to some of BCC’s publications which you and your wife may find helpful.
I just wanted to say I think it’s great you’ve come on this site for your wife. I don’t have any information or anything of any use for you but I just want you to tell your wife I am sending her all my positive vibes and a big cyber hug. It really does take a while to get your head around a diagnosis and she’s probably still a bit numb but in a few days things will seem different.
Northern bloke, i too dont have any advice for you but hang in there, i know you will get all the help and support you need on here. lots of ladies will be along soon. sorry you and your wife are going through this crap, sending you both a hug x
So sorry to hear that you are going through this but you have found the right place for support and understanding as we are all in the same boat. I was dx with primary and secondaries mets to the lungs from the get go back in march this year, so far I have done 6 months of chemo, then surgery to remove the breast and lymph node clearance and now due to start radiotherapy also taking tamoxifen for 5 years and through all of this was on herceptin, we think the herceptin is keeping the mets on my lungs stable. So far so good, just keep carrying on with the treatment plan, I’ve also looked into diet/nutritional help there are a lot of books written on the subject and you might like to check out the complementary threads where they discuss this in more depth, I have changed my diet to try and make my body more alkaline and less cancer friendly, also take supplements based on my own research, basically its a steep learning curve but I think as long as you keep up with the conventional treatment plan and then add anything else you might be drawn to like diet or supps, I reckon it all helps. Please feel free to PM (private message) me. Hope this helps.
Sending you love and light Sarahlousie xxx
Just a very quick post as dashing out, but I’m just finishing 12 weeks of Paclitaxel if I can be of any help to you & your wife. Mine is for bone mets.
Firstly, thanks Dugsy, Sarahlouise, hollymeg, mabeline & Jo for your replies - much appreciated.
Dugsy,
It would be good to hear your experience of Paclitaxel. I understand weeks 3 & 4 are the worst ?
Sarahlouise,
You seem to have started from a terrible position too - good luck with it. I think my wife’s primary must be pretty small as it couldn’t be felt. They had x3 failed attempts to get a sample first time, so second time they took x6 shots at it - still awaiting the results. At the moment the major concern is the liver, so I hadn’t really considered that they might want to remove the breast at some point in the future. Had assumed that she was too far gone for that to make any difference. My wife’s diet was pretty good already, but I’d be interested in your diet tips or links to the appropriate threads. Not sure what foods would make your body ‘alkaline’, although I’ve heard asparagus is good. As I’m doing all the cooking now, her diet might be about to get worse !
My Paclitaxel or Taxol, was given weekly, rather than once every 3 weeks, as this helps to minimise the side effects. So rather than one big dose & then 2 weeks off, I had the dose split into 3 smaller doses given weekly for 3 weeks & then a week off to recover. From what I’ve heard it isn’t given much as one single dose as it’s quite a toxic chemo & would knock the socks off you for a while!! In smaller doses you can manage the side effects, although it is quite hard having it every week.
I found the main side effects to be tiredness & a yukky taste in my mouth, which both last for about 3/4 days each week. And a terrible foggy head for a couple of days after, which is a bit weird!! Also as the treatment went on I have had some problem with numbness in my fingers & toes, but it isn’t too bad & will resolve once treatment finished.
The main thing about Taxol is that although having it weekly is hard work, it can also be very effective. I have bone mets, and was supposed to have 18 Taxols but as it’s worked so well for me my consultant is stopping after 12 & keeping the rest in reserve for if I might need it again in the future.
Do let me know if I can be of any more help & good luck to your wife with all her treatment.
I am sorry to hear of your wife’s diagnosis. I was diagnosed in 2008 with primary BC. 2 months after my primary diagnosis I was told that I had mets in my liver and bones. I am HER2 and ER positive. I had taxol and herceptin. I had the tax every 3 weeks. I didn’t get too many side effects from the taxol and managed to keep working through most of it. I did find that the fatigue got worse after each cycle.
The tax and herceptin combo worked well for me. I have now been stable for 3 years and recently celebrated birthday number 46. I continue to have herceptin every 3 weeks and take tamoxifen. The herceptin only takes half an hour to go through and I don’t have any side effects from it.
My quality of life has largely remained unchanged. I still work full time, and do all the same things that I did before diagnosis.
Receiving a secondary diagnosis is initially devastating. Despite having this diagnosis there are many of us on this site who continue to live full and active lives. You will find some truly inspiring stories on this site, i.e. women who have been living with liver mets for 8 years. It is my view that having hope has a significant impact on how we cope with this disease.
I am happy to try and answer any questions that you may have.
Dugsy,
My wife’s on weekly Taxol too and her side effects are similar to yours. No sign of hair loss yet, but I guess that will come. I hope the outcome is as successful for us as it has been for you. We’ve only had x3 doses, but the blood results already seem to be going in the right direction.
AlexD,
Your situation sounds very similar. Don’t know what ER is though - should I ? Good news that you managed to keep working, as my wife is the type that wants to get back into things as soon as possible. Congratulations on your 3 year milestone - I hope we’ll be able to report something similar.
Thanks both for offering to be a point of contact.
ER is the abbreviation used for Oestrogen (blame the yanks, they don’t know how to spell!) If your wife’s tumour is oestrogen positive, she’ll probably be prescribed hormone therapy, either Tamoxifen if pre-menopausal or aromatase inhibitors (e.g. Arimidex), or if pre-men and Tamoxifen doesn’t suit, then Zoladex to turn off her ovaries and then an aromatase inhibitor.
A few weeks ago when I was in for my Herceptin I got chatting to the lady in the seat beside me, she’s been having Herceptin for secondaries for the last eight years and looked (and felt) really well and her secondaries were stable and had been for ages.
Just thought some of you might be interested that blondie, FairviewJ and myself posted on a thread 2 years ago about being on Herceptin a long time - we started in 2003/4. Blondie had just passed her 100th! and I followed her a couple of weeks later and I think FairviewJ has probably been on it longer than the two of us as she started in March 2003 I think. It is an amazing drug if it works for you. I am very sure I would not be here now if they hadn’t discovered this drug.
Wow! I think that you Dawn, Blondie and Fairview J are an inspiration to all of us breast cancer ladies who are on herceptin for a year ie 18 doses. I have now had 5 and will have my 3rd MUGA scan on Monday so I will be thinking of you 3 musketeers.
I raise my glass to you and wish you all a long and healthy life, and thank goodness for herceptin.
ChoccieMuffin, dawnhc, Mazzalou - thanks for your posts.
ChoccieMuffin,
When can we expect to get the diagnosis on ER ? Does it come from the breast biopsy ? We’ve had 3 goes at getting a biopsy so far… Try 1 (3 samples, failed), Try 2 (6 samples, failed) and we’re currently waiting for the results from Try 3 (4 samples). So, on top of everything else, her breast is now extremely bruised and tender with 13 holes in it… Is ER positive a ‘good’ thing in this situation ???
dawnhc,
Yes, very hopeful feedback, thanks for sharing.
On the subject of ER positive, that’s what I am and I’m a bit confused. I understand it to mean that the tumour is Oestrogen receptive, i.e. it feeds on oestrogen. What I can’t understand is how is my body making oestrogen when I have no ovaries (they were removed in April 2008, along with a full hysterectomy). I have heard that body fat produces oestrogen but, although I’m certainly no Miss World, I’m not that big! I know you can also get oestrogen from plants. Anyone shed any light?
NB, you might find that your wife’s breast care nurse can take a look at the notes for you, as I wouldn’t be surprised if they have already done the oestrogen and progesterone testing and it’s possible they didn’t go into that much detail when they broke the news. So give her a ring tomorrow to ask.
I don’t know whether it’s helpful with a secondary diagnosis, but I know that for primaries it means they have other weapons they can use to attack the cancer, like Tamoxifen or aromatase inhibitors.
Mabeline, we still produce some oestrogen after menopause, but obviously not in the ovaries. Oestrogen is produced by the aromatase enzyme converting androgens to oestrogen. As I understand it (imperfectly) this goes on in various tissues around the body including fat cells.
Filosofie,
Thanks for this information, it is very helpful. Now I understand why I keep reading about aromatase suppressors. Can the body survive happily without any estrogen at all though? I thought estrogen protected against heart disease and osteoporosis. Maybe I’ll have to take other drugs to prevent these?
Mx
