How many MBC stage 4 to liver, lungs and bone are alive 5 yrs ++

I've been in treatment for 7.5 years with lung mets, added bone mets 4 years ago and then liver mets 3.5 years. So I haven't had all of them for more than 5 years, but I've been metastatic over 8 years, counting from pleural effusion that was not properly diagnosed. I don't think my treatment list is up to date, but I'm currently on Halaven but probably switching soon.

Raven, I'm 18 years out from bone mets. I consider that cure. As you know, I have lung , chest and liver now. I'm 20 months out from DX of MBC. Lung and chest responded beautifully to IF almost gone in fact. Liver responded to y90 for over a year, now a new liver met. If I get to have another y90, it could give me another year, if I respond to AA the longest I've heard of is lulubee with 18 months.

I don't know, no one knows if I'll make it to five years. I know they're are some who have, even one with liver mets.💞

you made my day!

I was diagnosed with bone mets, lung mets, innumerable liver mets and 3 brain mets in November 2012 and I am still around with quite a good quality of life. I went on to Xeloda in November 2012 and within 15 months, I was NED in the Brain, Liver and Lungs, except I still had some progression in the bones. I was on Xeloda for 44 months when I again had progression in the lungs. I then went on to Afinitor Aromasin combo for another 18 months as this treatment worked will on my lung mets, except my bone mets were still slowly progressing. Early this year I went back on to Xeloda as my lung mets again returned as well as some abdominal ascites. Xeloda worked for about 6 months and I am now on Fulvestrant as my lung mets have returned again. Progression is slow thank goodness and I will find out in another month whether the treatment is effective. I will go on an immunotherapy trial next and I am hoping that will be after Christmas as I have too many things to do before Christmas.

Raven4 and Grannax2, I ended up in hospital on my first or second round of X (14 day on and 7 day off) as I was on maximum dose, 4 tablets in the morning and 4 tablets in the evening. My feet had huge blisters on them and they were red and sore, so I stopped my daily walks and I kept them elevated as much as possible. I initially was nauseous and I had a lot of explosive diarrhea and gas. I was passing red blood in my stools and that is why I ended up in hospital. It was just a burst blood vessel from all the explosive D. So my dose was gradually reduced over the next few rounds until I was on 2 tablets in the morning and 3 tablets in the evening and that seemed to be doable for me. I persevered with the cracked feet and I took gastro stop for explosive D and when scans showed regression in my brain, and liver after 3 rounds, I just kept going. Just over a year later, I was NEAD in all the organs except the bones, and I have had some radiotherapy to particular areas of my bones when they get too painful or to slow progression in that area. I have taken the odd extra week off after the first 9 months or so,and that was my choice, but gee that helped me mentally.

Each round of X, you have different side effects, which really intrigued me. Yes, fatigue, nausea especially the first few months, red and cracked feet and numb fingertips were the main side effects, but your body will get used to it.

I was a Breast Cancer naturopath and nutritionist early on after I started taking X, and she told me to eat more protein. No stone fruits which I loved but more berries. Multi B vitamins, Curcumin (which I didn't take). I also had to stay away from lactose and that was very hard for me. Almond milk, Rice milk but no Soy milk as I am ER positive.

I ended up with DVT in my right leg after a couple of months probably from lack of exercise so I have been on blood thinners since then.

I also have Lymphedema in my right arm, chest and shoulder blade which may have been exacerbated when I had radiotherapy to my right shoulder, and some mild lymphedema in my right leg.

When I went on to Afinitor Aromasin combo after my 44 month ride with X, I found that I had completely different side effects on that treatment and I also found them difficult, but what is the alternative?

I wish you all the very best of luck with Xeloda, Don't forget that we are usually put on a high dose so that it gets rid of as many of those suckers as possible, and then the dose will be reduced so that you can manage the severity of the side effects and the chemo still does its job.

I have heard of one lady who was on Xeloda for 8 years.

Hugs

Mandy

It is very calming to my soul that there are others living long term with organ mets and are HER2-.