Has anyone with Triple Neg have a recurrence and then NED?

cheekymonkey

I'm just wondering because my sis is fighting so hard, and her onc. told her she has to be on chemo the rest of her life. She is SOOOO depressed, she is not the same happy, positive girl I've known my whole life. She sees me, who was also triple neg, doing great, and I know she is happy about that, but I also know that it makes her more sad about her situation. I keep trying to find information that might help her. I also recently heard a friend talk about a new chemo with no side effects. Is this possible?

Thanks ladies, and a big prayer goes out to all of you fighting this fight! 

fd411

My onc told me that I'll always be on chemo, that I'll never get to NED, I'll try chemo drugs til they stop working, and go through the list. He also says because I'm healthy, it should be about 2 years before things start getting toward end of life. But just because he tells me those things doesn't mean I'll try any less harder to have a good life and prove him wrong. I'm just rolling with the punches.

But I also think it depends on the individual. How one responds to treatment, how advanced the disease is, etc, and there is always the exception to the rule and miracles!

The only drug that didn't have side effects for me was Navelbine. Didn't even feel like I was on chemo. 

jeanne46

Yes, there are people with triple neg. disease that have recurred and gone into temporary remission with chemo. Don't know of any cases where the remission was permanent. I've heard that only about 20% of mets cases actually go into complete remission. However, with that being said, and all the other statistics and opinions that various docs and researchers and friends share, they are just that: Numbers and trends. It doesn't necessarily mean YOU (or in your case, YOUR SISTER.) Also, there are cases where the cancer is treated more like a chronic condition than an acute one. Granted, most are not triple negative, but not all. And my onc also told me that triple negative disease tends to respond well to chemo.



When my cancer recurred after more than 13 years, it had transformed from ER/PR+ to ER/PR- and Her/2-. My onc also told me I'd be on chemo the rest of my life...........it's been two years and I'm still pretty asymptomatic, although my disease has gotten near normal and then progressed again. I've had a few chemo breaks that have been heavenly. Am now in a clinical trial using ONTAK, and doing PDG (pretty darn good) with regard to side effects. My cancer seems stable at the moment.



Being a triple negative definitely lessens the options, but there are still a lot of chemo drugs available, and more coming out all the time. I know it's difficult to find something positive to advise anyone with advanced recurrent disease - but I try to take advantage of each good day, make a short term plan for a weekend vacation or special event, and concentrate on doing things I enjoy. Although my husband will likely outlive me, it's possible that he could get hit by a car on the way home from work tonight. Since we don't know our future and our past is history, we can only do something about today. Make it a good one!



Best of luck to your sister, and to you. How lucky you both are to have each other.

kris2386

In response to the new chemo with no side effects...my mom is on abraxane/gemzar for triple negative with mets and she is tolerating it amazingly well.  I don't know how new it is but is is mixed in albumin to be easier on the body and more well tolerated.  The only side effects she has are fatigue and hair loss,  she hasn't been "sick" with the treatments.  I shouldn't say "only", it does affect her blood counts but she has done well so far.  Its hard to believe she is taking chemo and dealing with stage 4 cancer with how she has been feeling.  I just hope it shows to be working when she has scans in a few weeks. 

twink

I must be misunderstanding this thread... in particular, this comment:  "Yes, there are people with triple neg. disease that have recurred and gone into temporary remission with chemo. Don't know of any cases where the remission was permanent."  I didn't know that recurrence of triple negative BC meant it would never go away.  Is this correct?