NED Stage IV? Chemoless stage IV?

KG1993 · 12-20-2011, 08:22 PM

Can anyone tell me if they are stage IV bone and liver mets NED?

Also if you are stage IV, do you always take a low dose/high dose/no dose of chemo? Can you be chemo free? Herceptin only?

I have been web surfing and not liking what I read, so I am asking my stage IV sister experts.

Thanks in advance,
Kim

KG1993 · 12-20-2011, 09:13 PM

Nobody wants to replY????

chrisy · 12-20-2011, 09:50 PM

Oh I do, but I knew I couldn't do it justice on the iPhone. So now on my iPad it's easier but still may just decide to type something different than I wanted...

I'm "only" liver mets, since 2004 and although I am currently in treatment for active disease (stupid cancer) I have been NED twice, most recently on tdm1 for over 3 years, 2.5 of them NED.

That dude (Ned) can be a real flake, teasing some of us with relatively long term relationships or just refusing to show up for others. But NED's not the only game in town, and many of us do well enjoying flings with the STABLE boy... Heaven knows I'm not trying to make light of a serious subject (especially since I am currently in active battle, looking for some love from either of them! But I do better when I laugh than when I cry, and ya gotta do something, right?

The truths are, as of now, stage IV bc is not curable and those of us in that game expect to be in some kind of treatment for the rest of our lives, even while hoping the cure is just around the corner. But not curable is different from not treatable, and there are lots of agents that can work well and for a long time. Increasingly I hear top researchers/clinicians using the "c" word in the same sentence with "metastatic", so there is much reason for hope.

Till then tho, all I can say is "always" and "never" as in your questions doesn't really apply. The overall strategy as I see it is to maximize disease control with as little toxicity as possible - so you can maintain your body's resources for the next attack. As many wise people here say, it's a marathon, not a sprint.

For me, I've been fortunate to be able to be effectively treated largely with targeted therapies, which can be much less toxic to you but still nasty to the cancer. But it really all depends on how your individual cancer responds. So there are no absolutes, but there are many options which can allow you to treat the cancer while minimizing the side effects.

One final comment, beware of statistics especially with her2+ cancer, this field is changing rapidly and in the past 5 years has turned out to be a favorable factor, and much research is going on in this area.

I know I haven't really answered your questions, but there are no "right" answers beyond this: there is much to be hopeful about. Do not lose heart.

Lauriesh · 12-20-2011, 09:59 PM

I am NED with liver mets, but didn't have bone mets.

I have been off chemo for almost a year, and only take Herceptin and tykerb.

Some women will take a break from chemo, but remain on hormonals and Herceptin, if they are er/pr+ and are stable.

there are some long term stage 4's that have been NED for many years, and have stopped Herceptin.

Some women remain stable on Herceptin and tykerb, without any chemo, and will only be on that combination even if they are not NED.

There seems to be numerous combinations of treatments that stage 4 women have- combining hormonals, chemo and Herceptin and tykerb.

Laurie

dawny · 12-20-2011, 10:34 PM

Hi Kim

I am NED Stage 1V, I had mets to lungs, neck and chest. I had a complete response to Abraxane and Herceptin. I will continue on Herceptin now, until it eaither fails or something else comes along.

Good luck
Dawn

KG1993 · 12-21-2011, 08:57 AM

I am on this website for my Mom who was dx in Aug 11. She just finished her 6th treatment of double chemo. She is meeting with oncologist at Mayo Clinic next week.
She is ready/needs a Chemo vacation. I know they plan to keep her on herceptin for at least a year. I am not familiar with some of the less toxic options.

Thanks for the replies. Keep them coming if you have any advice.
Again she had bone mets and 2 small liver mets.

Kim
Merry Christmas

chrisy · 12-21-2011, 01:37 PM

Herceptin is one of the less toxic options. She will feel much better on herceptin alone - and Herceptin alone may hold her disease in check for some time.

KG1993 · 12-21-2011, 02:22 PM

Chrissy,
I sure hope so. She really needs a break from the taxotrene and carboplatin.

Kim

Lori R · 12-21-2011, 04:12 PM

Kim,
I am a Stage IV liver mets gal and I wanted to provide your mom with reassurance that she is on a tough combination and is almost done.

I did get a break and was fearful that if the cancer returned that I might not have the strength to fight another battle. I was fortunate to have a year + break and the next chemo I went on was Abraxane. I found it to be much easier that taxotere.

So...here is hoping for a long, long, long break for your mom.

But, if the cancer returns, there are some Stage IV gals who fight back the enemy, get a year or 6 months off and then fight it back again. I've been doing that for 4 1/2 years and it has never been as tough as that first round of chemo.

The worse is over....Lori

KG1993 · 12-21-2011, 04:20 PM

Lori,
Thanks for the words. She is so fearful that she is going to feel like she does for the rest of her life (taking the chemo combo i mentioned earlier).

I will call her tonight and tell her what you said. She turns 62 tomorrow, so that should give her some GREAT news.

Chrissy,
I also talked to her earlier about what you shared with me!

Thanks so much. Again, we head for scan next week, so time will tell.

Merry Christmas,
Kim

StephN · 12-21-2011, 04:33 PM

Hello Kim -
I am also 62.

Was found to be stage IV with very extensive liver mets and a spot on my sternum, which I normally don't mention, but it was there.

A mix of drugs with Herceptin brought me to NED and I have never had any new mets come back since 2005. After taking Herceptin for over 7 years, I stopped just 3 years ago and am STILL NED.

Your mom may not have a complete response, but then again she might. The researchers are learning more about this disease every year and the new targeted therapies are not hard on a person as the traditional chemos. In this respect we HER2 patients are fortunate!

Tell your Mom there is hope beyond belief. I had to go through those hard months, but made it out the other side, to have a long run with Herceptin alone.

KaiM · 12-21-2011, 04:53 PM

Chrisy, your post was so well said. Thanks so much for for all the hope you give me.

12-22-2011, 06:29 AM

I was diagnosed at Stage IV with mets to bones and liver. Had chemo w/ Herceptin in Jan 2007. Have been on Herceptin and NED since. So, it can happen!!

12-22-2011, 09:27 PM

I was diagnosed at Stage IV with bone and liver mets in Jan 2007. Got chemo and Herceptin in Feb 2007 and have been on Herceptin and NED since I finished chemo. I feel very, very lucky but it can happen.

karen z · 12-23-2011, 05:26 AM

I don't know if there is anything I can add to the very informative information you have received here. As you can tell, your mom has options and many folks here have had wonderful responses to chemo/and or target therapies. Herceptin is not at all difficult for most. I really didn't experience any side effects with Herceptin. Thought it was wonderful after chemo.

Emelie B · 12-23-2011, 09:35 AM

Sorry for the delay in replying, but the coming holidays have been busy in my house.
As you can see by my signature I had a return of cancer in my lungs, liver, lymph nodes, and bones. I did 12 weeks of Taxol, Zometa and Herceptin and then had a scan and I was NED. I have remained NED since April 2009 on Herceptin only. I dropped Zometa after a bone scan in July said I was still clear of bone mets. I also was experiencing pain in my jaw and wanted to take a break from Zometa, so that is my story.
19 months and counting! You just never know how this devil is going to act.
Please stay positive for your Mom and you and know that there is HOPE.
Merry Christmas to you and your family,
Emelie

laura4252 · 12-25-2011, 12:31 PM

Hi Kim, This is Laura in Colorado Springs, Colorado. As of April 2011 I am Stage 4 with two small lung lesions. I have been on Herceptin for two years (infusion every three weeks at University Colorado Hospital in Denver, no port). I was diagnosed in 2005 DCIS, Stage 0, high grade, did lumpectomy & radiation. (Docs wanted to do mastectomy, I did not want the trauma of that surgery). In April 2009 I found small lump, same breast, diagnosed with invasive breast cancer. Docs still want me to do mastectomy. September 2009 I was to get chemotherapy (Herceptin, Taxotere, Carboplatin). The Herceptin went in fine, but I had a toxic reaction to Taxotere. April 2011 it moved to my left lung. June 2011 I tried Tykerb, but at two pills a day (was supposed to take 5), my stomach was always upset. I stopped after 3 weeks. My oncologist told me about a vaccine treatment in Thailand (Dr. Michael Har-Noy) that she felt was very "sophisticated science." She knows I don't want chemotherapy or mastectomy, and have remained firm on this. The cost (around $40,000, with five weeks in Thailand) makes it prohibitive for me. Right now I live with the two tumors in my right breast, and the two in my left lung. I plan on getting PET/CT scan in May & will see how things are going then. Like Chrissy said, you do the best you can to hold things at bay & hope that it buys you time for a cure.(Yes I am one of those that believes in CURE). The immunovative vaccine therapy will eventually get approved by the FDA so the treatment can be covered by health insurance. Every breast cancer is unique and responds differently in each of our bodies. That's why I never could accept how our docs practice statistical medicine. I watch this site and am confirmed in my own guarded approach to chemotherapy regimes, especially when I see so many women follow the rules (surgery, radiation, chemo), then find the cancer comes back. My best advice is for you to follow your instincts about what feels right for your own body, keep your immune system strong, and love life fully.