Finally found you having started with the recall routine breast scan (I’m 49), “Help I’m worried” group, to the “Oh shit i’ve got BC” and “Aargh, they’re in my axilla” and finally to the “Bollox it’s bone, liver and lung” And all in 4 weeks - it’s been a rocky ride.
Was due for MX tomorrow before the mets were found so it feels a bit strange not to be preparing for surgery. The one bit of good news I had last week was that my CT brain is clear. I had been getting myself into a right old state thinking they may have travelled upwards.
Was discharged from surgeon last week (“…maybe see you again next year…”) and have first appointment with oncologist on Wednesday afternoon at Kettering General where I also work as a nurse (Alcohol liaison specialist and I’m definately not drinking now!) I have also requested a ‘belt and braces’ second opinion at the Marsden.
It’s has been really useful to read through all your posts, advice etc on this forum. Am beginning to think that I should really be taking the opportunity to enjoy these last couple of weeks before chemo and some of the inevitable side effects. I feel so well at the moment.
I have DCIS and some sort of metastatic BC with definate axilary involvement. My bone mets are in my spine, hip and ribs. I have one small area on my lung - left lower lobe and “a few” (haven’t wanted to ask how many but figure a few is better than “multiple”) areas in my liver which are less than 1cm. As far as I am aware, I am ER and HER2 positive but didn’t realise that there are degrees of this.
Despite being a nurse I know very little about BC and am on a bit of a crash course, working my way through NICE guidelines and selectively Googling some of the less scary sites.
Sounds like Taxol and Capecitabine and pretty crap but hey anything that keeps me around to nag my husband, 11 &13 year olds sounds good to me! On a positive note, once diagnosed and coming to the realisation that I’m at least going to last the summer I have splashed out on a huge Mexican hammock which is way too big for my garden but I intend to spend the summer rocking gently in the breeze, making pictures in the clouds and re-watching the whole of Battlestar Galactica!
The good news is that it is not in your brain. I am ER and HER2 positive. Tax is the gold standard chemo for visceral mets. I had tax herceptin and bone juice all at the same time. The chemo works better if you have it with herceptin. I had two liver mets and one has disappeared completely. As your lung and liver mets are quite small they may disappear also.
There is a new drug that is currently being trialed, TDM 1. It has been hailed as ‘super herceptin’. At Your second opinion appt you may want to ask about going on this trial.
I would push for the MX after chemo as there is evidence that if left the primary suppresses the immune system. There is also research to show that women who have secondaries but have a MX have better outcomes.
I am on tamoxifen as well. There is some evidence that the combination of tamoxifen and herceptin produces a positive synergy. As Lance Armstrong has said its all down to ‘the aggregation of the marginals’.
Thats everything I know about effective treatment for ER and HER postive mets.
I am nearly 3 years post diagnosis and thanks to a cocktail of drugs I live a normal life, touch wood I have no symptoms and my disease is stable. The tax, herceptin, bone juice combo is a bit gruelling but I think its worth it.
Thanks for that Alex. Have spent the day searching around for chemo articles etc trying to get up to speed for my first appt on Wed. Have to say I have been completely freaked out by the potential cardiac toxicity for some of the chemo drugs and herceptin but I guess needs must…
Went to pick my son up from fencing with the top down on my Beetle which always brings a smile to my face. Kept thinking I don’t have many more weeks with my hair blowing all over the place Lx
Haven’t posted for a while, but now find myself having to join this thread, I’m afraid Have been living well and doing really well with bone mets since Dec 08, markers rose markedly in the summer and following full body MRI have now been diagnosed with multiple lesions to the liver. I have no symptoms whatsoever and apparently all the lesions are very tiny, which I’m hoping is a good thing.
Starting Taxotere in two weeks time, have heard it’s a very vicious chemo - I’ll put up with that if it zaps the little b*****ers
Sorry to hear your recent news LesleyP. I only have mets in my Bones but just wanted to let you know I am thinking about you and I am sure the other ladies will reply to your post soon. Take care, love Va
Thanks Val and m1yu, think I’m still a bit numb actually as I seem to be coping better with this news than I probably should be. Since my earlier post have spoken to bcn and she has said the scan shows several tiny lesions whereas the onc said multiple - so I’m hoping several is better than multiple! She also said my liver function test from last week is pretty nearly all within normal range. Bring on the Tax, just want to blast them all into oblivion as soon as possible.
Lesley
Thanks Julie - I am taking my inspiration from all you liver mets ladies who are doing well, hope you’re doing ok at the moment, I’m sorry that I’m a bit out of touch with these boards at the moment but there’s a tendency (with me anyway, I’m ashamed to say) to stay away from the forums when things are going well. I think I will be here a lot more from now on …
Hi Lesley…I’m SO, so sorry to read your news…I’ve just sent you a PM and an email, hope you’ve received them ok? Wishing you the very best of luck with Tax…I hope it works so very well for you.
Love Belinda…xx
Hi Lesley
So sorry to hear that you’ve now got several (not multiple!) liver mets. Really wishing you well with your treatment and blast those little uggers
Nicky x
Thanks Nicky and Belinda - Belinda, I have emailed you. I just want to get started on the treatment now as quickly as possible, I start on Monday the 26th, so not too long to wait. Hope everyone else is doing as well as possible
Sorry to hear about your liver mets Lesley and hope treatment works well for you. I’ve had chemo and Tamoxofen (am oestrogen positive) that is now holding the condition. I did consider asking for Cyberknife but this needs to be done before you have more than 3 mets so I don’t know if you’d find this an appropriate avenue to follow. My experience is that many Oncs don’t really know about its possible use with liver mets - but some hospital do…
take care
Fran
x
Hi Fran, I don’t know much about Cyberknife - when you say more than 3 mets, does that mean mets in 3 different organs or just more than three in total - because I have multiple bone mets and now several liver mets, which I guess counts me out for this treatment
Sorry to hear that you have been diagnosed with liver mets. I can imagine how shocked you must be feeling right now. When I ‘just’ had bone mets I felt confident that they could be contained for many years (obviously I was shocked originally but coming on here gave me the belief that I could survive for many years.) After my first CT scan after 3 months on Femara, there had been no progression. I went confidently to the next results appt, a further 3 months later, only to find progression to my liver. That was my darkest moment, it was just before Christmas and I was convinced it would be my last Christmas. So I know how you must be feeling. Yet I have managed to return to the feeling that I will still be around in the near future. I am mainly positive and am enjoying life! My liver mets have increased again and after femara, aromasin and faslodex have all failed I have just been put back on chemo - Xeloda, but have only had one cycle so far.
My liver mets are speckled around as you described! cyberknife wouldn’t be appropriate as there are several ‘spots’ rather than solid tumours, the oncologist is confident that chemo could ‘zap’ them as they are so small. I had taxotere the first time in 2007 and it really worked for me, to the extent that I had ‘total response’ and the tumour could not be found on a scan after the chemo. Hopefully you will have similar if your liver mets are so tiny my tumour was a solid 3cm lump and chemo manged to obliterate it.
Good Luck with the tax! - keep us informed of how you’re getting on!
Any questions about Tax or anything else, please do PM me. We are here for you!
I apologise for jumping in on your thread but just wondered if any of you could help with a question i have…
I have extensive bone mets, but recently have had pain much like a bad stitch under my right ribcage, plus pain in my right shoulder blade, both really uncomfortable, anyway im due to have a ct scan just waiting for date, when i spoke to oncologist today he said that by looking at my recent bloods which were taken routinely last week before my pamidronate it looks like theres no problem with my liver, all results look normal, just slight raised sodium i think, so what i just wondered is would the blood tests show if i had liver mets?? can i assume that if my results didnt look suspicious in any way am i all clear from liver mets?? i am due the ct scan anyway of my neck/chest and abdomen but any feedback would be great!!
Thank you ALL so much for responding - Nicky, you sound very positive and upbeat despite the hormone treatments failing - I know there are lots of ladies who do really well with Xeloda though for years and years, so let’s hope that’s the case with you.
Lucy, all I can say is that I was dx’ed with liver mets on Tuesday, my blood results from last Wednesday showed virtually all normal readings, so not sure if that’s much comfort to you. The CT scan will hopefully be able to put your mind at rest - I do know that the symptoms you describe can also be as a result of (non-cancerous) gallbladder problems which are easy to treat so let’s hope if it’s anything, it’s that.
Tracey - I don’t come on this thread normally as I have bone mets but late last year I had similar aches and pains to those you are describing and immediately thought ‘liver - aarrgghh’. Anyway after a bone scan then ct and mri, it was found that it was only progression in one of my vertebrae and that it was putting pressure on the nerve endings and muscle bits that radiate from the spine. It was sorted with a one-off rads blast. Hope this eases your mind a bit.
Ive had mri of spine…showed continued spread to whole of spine now…but thankfully no evidence of breakdown, had mri on weds of pelvis and femurs which showed mets throughout both, although my onc hasnt full report yet so waiting to hear about that, so maybe if there is a prob there its causing my pain now.
I guess they cant rely on blood results to be exact as in your case lesley, im hoping maybe mine are due to something ‘non-cancer’ related!! think we all think ‘oh god its spread!’ with every pain, will just wait (without panicking lol) for the ct scan.
Sorry to hear of your recent liver mets lesley, thinking of you and thankyou for replying when im sure your head is all over the place.
I’m due to start TAX in 3 weeks (just had the last of my 3 FEC) so if you need a TAX buddy…
I was diagnosed with secondary BC at the same time as the primary and DCIS was discovered at routine screening (coming up to 50!) in May. I have 5 liver mets, a couple in my lung and thoracic / lumbar bone mets.
Keeping my fingers crossed that TAX does the job then plan to push for MX and axillary clearance.
My understanding of TAX from reading the forums and through talking to chemo nurse is that it is less nausea inducing but can cause general muscle/joint pain which my chemo nurse has recommended I try to stay on top of with regular ibuprofen / paracetamol. Peripheral neuropathy in finger/toes can also be a prob. and apparently keeping your fingers in ice during treatment can help!
Because there is more of a chance of having a systemic reaction, I’ll have steroids (Dexamethasone)the day before and for a couple of days after. Unfortunately they are given at a higher dose (16mg/day) than on FEC (8mg/day) so guess I’ll be buzing and sleeping less for a few more days; am saving up DVD box sets and ironing!
My chemo nurse also said that TAX has a tendency to drop your Neuts faster and you can become neutropenic from as early as day 5 so need to be extra cautious. (I found with FEC mines didn’t hit rock bottom until day 13).
Hope some of these ramblings are useful - good luck and keep focusing on all the positive stories out there!
Laurie xxx
PS: Just can’t bear to change my profile photo - currently sporting the full Kojak!
I have splashed out on a huge Mexican hammock which is way too big for my garden but I intend to spend the summer rocking gently in the breeze, making pictures in the clouds and re-watching the whole of Battlestar Galactica!
Lx