Triple negative, mets and liver lesions

Hi there,
A few months ago just before I was due to have reconstructive surgery to my rb I had my follow up ct scan and they found that I had mets around my mastectomy and 3 lesions in my liver. The uk offered me chemo again and I didn’t want the side effects again. I decided to enrol on a trial in Mexico which you have to be stage 4 and no bone mets. They pay for the non toxic drug which combats side effects and keeps your immune system high, platelets etc good, this way each treatment I get which is carboplatin is 3times the amount the uk can give and I have it every other week. In just 2 cycles my lesions have halved by size, and apart from a few chest pains after 1st treatment and a bit of sickness I have been fab!
Just to say that there is never a miracle cure for this but I wanted to try it out as had nothing to lose as I’m 38 with a loving husband and daughter of 5. Also you have to fund the chemo yourselves it’s just the non toxic drug which is free.
I have now been out here 2 months and just about to have my 4th treatment on Tuesday.
If anyone is interested I can let you have more information.
Wishing everyone in my position the very best of luck with their treatment and let’s hope there is a miracle cure just around the corner!
Julie x

Hi Julie
Glad to know you have found something that works I hope you are doing well. I just found your post and am in a similar situation with mets around my chest wall where I had bi-lateral last July and large lesions in the liver. I have been told prospects not so good. No other organs or bones affected yet. I have started on Gem Cistplatin but only have managed half a cycle so far as I was unwell after chemo. I am going for next round tomorrow.
I am very much interested in what you have found. I too do not want to give up I am 42 with an eleven year old girl and a very supportive husband. Please send me details as soon as you can regarding location, costs, who to contact and also let me know how you are doing now.
regards Sonia

Hi Sonia123, I HAD 2 mets on my liver and was given FAC chemo, by cycle 3 my CT scan showed that they had disapeared…I had 6 cycles altogether. I don’t ever see anyone else in the UK on FAC combo, FEC appears to be a favourite, but here in saudi Arabia advanced cancer is treated aggresively and NOT palliatively. I have ct scans every 3 months to check for anything new…so far, so good…
It’s been 12 months since I completed my chemo and I live a very full life, my goals and challenges are different than before. I have 3 children and a hubby(4th child!) I plan for the month ahead, refuse to pay extra for anything which has a 25 year guarentee ( no point!!) and I really enjoy my children, I spend far more time with them than I did before DX. With my new perspective on life I am much more relaxed and accepting of things, perhaps a bit too relaxed!
Good luck with your treatment and I hope you respond to it!xxx

Hi Horsie
Thanks for your reply. I just wanted to ask did your cancer originate in the liver or was it breast cancer to start with? I initialy had it in the breast had bilateral mastectomy, FEC T and radiotherapy only for it to return to liver within a month. If you dont mind please let me know what FAC is. I am happy to know that your treatment went well and all the best for future. I really am scared and dont really think this is it.
regards
Sonia

Sonia, Please don’t be scared…I am virtually holding your hand! I was diagnosed with BC, and the day before my double MX I had what they call a “work up”, a CT scan, bone scan, bloods taken and ultrasound of just about everything plus a ultrasound of my heard, it it called something else-can’t remember what though… That afternoon my surgeon saw me and gave me the devastating news that I had lessions on my liver and on my left hip so no surgery the next day as my treatment plan had changed. saw my Onc an hour later who explained that I would have chemo first, to try to get rid of the liver lessions. The liver lessions were the ones they were worried about. Plan B was cyberknife ( all oncology hospitals out here have cyberknife…) but that wasn’t necessary as the chemo zapped the liver ones and shrunk my breast and hip ones. I then had a lumpectomy, then 30 sessions of radiotherapy to mop up. All during this time sleep evaded me, I was in a terrible state… BUT…sleeping tablets zonked me out each night, but the positivity of my oncologist/surgeon and radiologist kept me going - they were SO positive and encouraging that I really couldn’t do anything than start to feel ok…
My onc likens secondary cancer to a chronic disease like diabetes. it can’t be cured but by golly they’ll treat anything that crops up straight away. That’s why regular scans…so if and when the tamoxifen stops working they can see, and treat what comes up…I have to sadh out, but will message you later this morning…hugs…xx