Anyone else with Stage IV and in Remission?

Wow, what an encouraging place to be.  I was diagnosed from day one with bone mets in ribs and other places in the spine.  I had a mammograms every year and it never showed up.  (last one 22/2011).  In Jan.(because of pain in the back) had an MRI and bone mets were found. Another MRI of the breast showed a tumor in breast.  I did everything right, but it came out wrong.  I had a scan in July and it showed no new mets and the ones I had were diminishing.  I will get another scan in Jan.  I am an active 74 year old living in retirement mode in FL.  Onc. doesn't say too much about remission, but I am just happy I have no new mets.  My tumor marker is 38 and 115 when I started.  Keep the positive vibes coming. My friends treat me like I am going to die soon.  I hate it.   I was having funny feeling on the left side of my head and had a MRI of the brain which was ok.  I had se's from Arimidex and now on Aromasin.  Thanks for the Sunday morning encouragement. 

I LOVE this thread!

This thread has given me so much hope that I deserately needed.  They found one spot on my liver and I had RFA done on it.  Having a CT scan of my liver to use as a base line for further scans on my liver and having another PET scan done on the 29th.  Praying that nothing else lights up and that I can be in remission.  I love this thread!

lorrhaw, I remember you from your photo...so nice to hear from you and wonderful news about being NED. 

It's really something to hear that docs in Vegas sounded like they gave up on you before even starting to treat you, and now hear you are NED! 

So good to find this thread!  I was diagnosed with liver mets a month ago, and today is the first day that I could even venture into the stage 4 threads mentally.  I know that we are all different, but it is good to hear the stories of those who've gone NED or in remission.  I have my 3rd AC treatment next Tuesday, and the onc said we'd scan after the 3rd and 6th.  Hoping to at least find that the 7-10 spots have stopped growing or shrunk.

Put what she said out of your mind!

I was dx in Sept. 2006, stage 4 mets to bones and bone marrow.  Had 6x FAC and 12 infusions of Abraxane. Dbl mast. in Aug. 2007 at which time I had CLEAR SCANS! Went through a clinical trial for a stem cell transplant in sept/oct 2007 and have had CLEAR SCANS since! I just got back from MD Anderson last week--still clear.  That was my 6 year check up!  I have only been on Femara, Zoladex and Zometa since.

BouncingBetties - Thank you! It is definitely helpful to read about people living and enjoying life whether still in treatment or NED, etc.   I am lucky to have a good example in a friend who has lived with lung cancer for 19 years.  She just manages it like a chronic illness with short bouts of chemo every 6mo-year depending on her numbers, and she is my inspiration and a rockstar (in my opinion).  At the same time, reading things from those who are going through the exact same or at least more similar type of cancer than hers provides me with so much insight.   Congrats on your good news! I would be shouting it from the rafters too!

Like many others here I started out at Stage IV and it is so good to hear all the success stories. I am not NED but of course would like to think I am going in that direction rather than progression. I just had my 2nd PET Scan recently and the primary tumor has shrunk considerably as well as significant decrease in the bony metastasis, and resolution of most of the pulmonary metastasis so that is evidence that the disease is at least for now not going forward. I know that most on this thread are Stage IV but am wondering how many have never had surgery and if you intend to?

BouncingBettes I think you have mentioned possible surgery and wonder if that means that you are considering it now that your tumor has shrunk down to 1 cm. I have often wondered what I would do if my mets continue to decrease and primary tumor shrinks further. My tendancy is to think that if it shrunk that much without surgery that I would not consider it but want to hear what thought process others go through in that consideration since it is a personal decision. All posts do not have complete "signatures" that reflect whether or not surgery has been done so I'm inviting further comments on this.

It is so reassuring to read all the positive feedback on this thread as we count those blessings that we have.

Hello all:

I have been away from this site for sometime, but managed to come in tonite and find this thread. How fortunate. It is just what I need. Dx Jan 2010 stage 4. Dx lymphectomy found 4 for 4 nodes positive. No treatment other than Femera. No primary site ever identified. I had 2 consults both onc's agreed that cancer could not be cured, but managed. Also agreed that best not to do anything other than femera. Have been NED for over a year. That euphoria lasted the better part of this past year. However lately, like many others, I find that I am having trouble finding my place. Feel like I am getting closer to regaining my life. Not my former life (have semi debilitating side effects  - fatigue is the most limiting) but a life.  

Have just switched oncologist's. The one I have been with really didn't listen to me. His prime concern was results of MRI's and Scans. My concerns are now related to living well with cancer. How best to manage the side effects of femera. But more than that I am upset about the 30lbs I am now overweight and the complete loss of fitness. I try to get active but not very successful. I used to be an elite athlete (up to age 55). Getting back into shape now, seems almost a tougher challenge than the cancer. Also, I keep thinking ... well if I am NED then I should be cured and act like it ... but I am still in the world of cancer... what's up with that.

Thanks BouncingBetties for your complete story and logic in regard to surgery. You sure have had quite a year and I understand how you feel about wanting it completely gone from your body.

Raro, I think NED stands for No Evidence of Disease and even if scars or residual mets show up I think that if they don't "light up or show residual uptake" on PET Scans that they are not considered active. So if you have a PET Scan where nothing lights up that would be NED (my own understanding). There seems to be some controversy on the reliability of using just the blood tumor marker numbers as evidence of disease. In general I think they are a "tool" used by oncologists to determine the efficacy of treatments. There are always disclaimers on thise tests written at the bottom of the blood test results that I receive. This site also has information regarding the tumor maker assays.

As for "being in the cancer world", I think once we've been there, we never really leave it. Even long term "survivors" are always looking back over their shoulders. I have a friend who had lung cancer 9 years ago and was the first of only a few I disclosed my cancer to. Every year she goes for a CT scan and this year they wanted a closer look and sent her for a PET Scan. Her doctor said those results are inconclusive also so they want her back for another in a month (when she goes back North for the holidays). She possibly had pneumonia and was on antibiotics for a while so she thinks that may have been part of the problem. This is one time where internet searches have me spooked because it lists pneumonia as one of the symptoms that lung cancer has returned. Of course I haven't said anything to her but now I am very concerned and have another month to wait before she goes for another test. Anyway I guess this disease keeps us on alert to make the most of the "present" - every new shiny day is a gift.

Wow, what a great support group. I see that my wish to be out of the world of cancer  will never be fully realized, but how I respond to it is in my control. Now I am truly determined to not let this have so much importance in my life. I am , now, resigned to the fact that I will need routine check ups. The anxiety will be there but I can minimize it. Looking forward to sharing my anticipated success with my sisters. Thanks again. Bless you all and your loved ones.

I have been on BC.org since becoming stage IV on 2/11, but just found this thread. I began treatment with arimidex immediately, and was pronounced NED on 2/12. I will have my next scan on 2/13. There are so many treatments for stage IV and new ones being discovered all the time, such as targeted vaccines. I never thought I could survive for long, but I have a hopeful outlook now. Stage IV is definitely treatable, so try to stay positive. I try to boost my immune system with healthy diet and exercise. Hugs to all.

Yes, and may the numbers continue to grow and grow and grow!!!! We need more NED members!!!! NOW!

Woooohooo kingcour! I posted on the other thread but had to celebrate with you everywhere. So happy for you. Can't wait to follow your progress with surgery etc.

Kingcour, are you still on taxotere? Reason I ask is my liver completely responded to the regimen (perj/hercep/taxotere), but lymph nodes did not. In fact, they were wirse on the PET. Onc wanted to pull me off taxotere, but I felt like the liver is what mattered. Not sure how long you can stay on it, but it took my liver from diffuse mets to no metabolic activity.