Anyone else with Stage IV and in Remission?

kingcour

Yes, I am still on taxotere. It has cleared up everything except the original tumor in the breast. It responded well at first. My nodes and bone lesions have completely cleared, and my liver has no activity as well. We are pressing on, I just have to stop to have the breast surgery. I will have a consult with the surgeon on the 28th.

NNBBFL

Congrats Kingcour and Ninalee:)    You have what we are all striving for and are proof that it is attainable !

nucci

NNBBFL, We have to be so careful with Internet searches because there is a lot of bad information out there, or partial information that takes us off course. I have a wonderful oncologist who answers all questions fully and clearly. I wish everyone had the same. I think that once we are Stage IV, cancer is a part of our biography, and we must recognize that but not let it control us. I ache and hobble around from my hormone therapy, but when the CT scan says "dramatically improved" I suck it up and deal with it. Medical students often suffer from the disease of the month that they are studying, and we have to guard against that. I really believe in a mind and body connection as to how we feel,and thrive. I have retired 10 years early to spend time with my family and enjoy life. A tough decision as I loved my life as a trial lawyer, but I love my family more. I am in remission for 14 months now, and am now beginning to worry as the anastrozole is expected to work for 18-24 months and I am 14 months in. My husband has progressive MS, diagnosed in 2008, so we are quite the jazzy couple. Stay strong, all the best.

nucci

Ninalee, what a great post. Thanks for the positive input. We are trying healthy eating, and greeting each day as a gift.

Scribe81

Thank you so much for everyone's posts, especially the initial one by PowerofPink...I needed this today.

I don't have Stage IV, but my older (and only) sister DOES. She is 36, and undergoing treatment for Stage IV breast cancer for the 2nd time. The first time around, two years ago (she was cancer-free after for about two years) she was considered stage IV, because she had the cancer in her lymphnodes (some were removed) and an inoperal tumor on her breast-bone. The Dr's keep saying that she had the "slow growing" kind, which was a good sign somehow, even though she had a tumor on her breast bone. After all the treatments (chemo/radiation, etc.) she was cancer free. 

A few months ago the cancer came back. Now it has metastisised to her lungs (2 tumors), bones (several tumors), lymphnodes, and, just recently, they discovered a 1/4" tumor in her eye after a routine eye exam. I am terrified as to what the tumor found in her eye "means", does that increase the chance that the cancer will spread to her central nervous system? I haven't been able to find out much information on the internet about all this...

Her treatment, right now, in hopes of slowing/stopping the growth of the tumors and spread of the cancer is menopause (chemically induced), and various medications, which I'm not that familiar with. I have a hard time talking to her about all this, though she knows I'm here for support...

BUT, back to my original poinit--it's great to read all these encouraging posts and stories of recovery, remission, and hope! It's gives me some hope that she will someday be cancer-free, again, even though I know realistically that it may come back again someday...and that it's more like a "chronic" illness now...

But, thank you, thank you for the post that started this thread...I have good days, and bad days, when thinking about my sister and what's she, and our whole family, is going through...this thread helped make today a "good" day.

K-Lo

My MO told me early on that we were not looking for remission, but hoping to keep (the beast) dormant.   Words.    My mets shrunk back to original chest nodules at last check.   And thats where my thinking is going to be until they hit me over the head with some "uh oh" news.   

Whats the dif between nodes and nodules anyway?

NNBBFL

nucci,

Yes I hear you in regard to the internet information but I try to get the same information at multiple sources before I put too much faith in it. I too have a great oncologist and she is quite forthcoming when I ask her specific direct questions. I know what you mean about worrying about how long a treatment stays effective as I am on Arimidex (with minimal se) and initially my oncologist had told me that the average time it stayed effective was less than a year, I have been on it for 6 months so also am wondering about how long the good results would last. That said, it has been exactly 1 yr since my diagnosis and I am in a much better position now than a year ago. I am fortunate enough to be of retirement age so can focus on being well. I too believe in the whole mind/body connection so I am very much in tune with what I put in my body and get plenty of exercise and sunlight (Budwig Diet) and tune out the stressors. Here's hoping we both have many more stable months on our treatments.

debbie228

I am so excited for you, I can't even imagine the feeling you have inside. I to am stage 4 triple negative straight from the get go. 3.5 tumor in right breast and had it removed. No nodes. Involved but the said spots in lungs. First I was mid dianoised then I went to Sloan in new York, I started taxol and advastin. Every week for three weeks and one week rest, started chemo Oct 19th. 2011, I get scans pt/ct every 2 months because of the trail I am on, first scan was Dec 19th 2011 and I was NED and every two months since Dec. I got the scans NED, my last scans were Nov 13th. 2012 and I am still NED. Thank you dear lord. The Dr was going to take me off the taxol awhile back she said she only leaves on 4-6 months but I was to afraid to be taken off didn't't want the crap to come back. So now it is a little over a year and the next visit in 2 weeks I will be taken off the taxol. She will leave on advastine. Which will only slow blood supply down if it ever comes back. I still will be getting scans every 9 weeks as per prodacall. I am very active like you, I think I have told you that in a previous message. I have now also taking on some of my volunteer work, I feed the hungry on Thurs. On my feet a lot, I have the neoropthy. With the taxol but I am a hell of a fighter so I push myself.my chemo weds. The volunteering Thurs. I make my butt get out of the bed get son off the school and I have 3 dogs and 1 cat so take care of them, my face is so red from the premeds on wed. And my throat hurts falso from premeds but that doesn't stop me. I hope with the grace of god that crap doexn,t come back for another 50 years. I a. Very positive and dr . Says also helps with outcome :-) I plan on being here for at least another 40-50 years. God bless all you women I keep all of you in my prays.

teacher911

After just recently going from DCIS 4 years ago to Stage IV in October I keep searching these discussion boards for positive posts.  Thank you to all for sharing your stories.  I started chemo 2 weeks ago and go for my 2nd infusion tomorrow.  So far so good!  My prayer is that I will be NED for many years.  Thanks for all the support.

Kelloggs

Good luck teacher911!

BCSUCk

K-Lo,

Nodes as in Lymph nodes are temporary station for lymphatic system(a track of vessels) travelers.These travelers are usually lymphocytes in healthy individuals,however;in non-healthy individuals,nodes temporarily house cancer cells and infectious organisms,such as bacteria and viruses.

Nodules are just a medical term for a lesion or solid mass that shows up on diagnostic imaging such as CT or MRI that is less than 3 centimeters in diameter.If it is greater than 3 cm diameter then called mass.You may see these usage of words often on pulmunary and sometimes on liver lesion imaging reports.

LuAnnH

don't put too much stock in how long a tx will work.  Those numbers are just an average which means some people it may only work a month and others years.  You just never know which one you will be.  Between all the hormonal tx's availiable I got close to 6 years on them all, faslodex being the longest about 4 years.  I am back on the hormonals with afinitor and it seems to be working well.  Don't wait for that ball to drop and just go with the good run!

kfontaine

CT Scan tonight at 1000 pm.....see what the liver has been up to!! Prayers and good thoughts needed!!

aic

Great advice LuaAnnH! Kfontaine, just pm'd you....sending nothing but goodness your way!

ThePowerOfPink

Hello Ladies, It has been a while since I have been on and started this thread.  I am still here. xoxo

What a crazy ride this has been. I have come back on to reconnect with others that are Thriving with Stage IV. Every day is a challenge even when you are fortunate enough to have your cancer to start to go away and keep it stable. We will always be in treatment until it stops working and then move on to another.  The side effects shuffle is what I am calling it.  Adjusting to the "New Normal" with each new treatment and figuring out how to make the best of every day. The head trip of this journey is one of the largest struggles.

Since I have been on here I have had another surgery (in January this year) to remove my ovaries.  My cancer decided it was time to set up camp in both of them.  I have been on a new treatment now and doing well.  This new treatment has been better physically but not mentally.  I can't seem to find my new normal and its getting to me.  Every three weeks is my treatment schedule and I have not figured out my new normal because I am reacting different each time.  Its just nuts I say.  I guess I need to just understand the new normal is not having a normal.  Ok, I will go with that and work on it.  See you have already helped by me just typing away here. lol

Going out for a little walk now. It is just beautiful out today. xoxo

Michelle101

 My name is Michelle and I'm a stage four breast cancer patient who had mets to my pelvic hip and spine. I say had because I am a survivor and my mets has been successfully treated through 25 rounds of radiation and tamoxifen hormone treatment. I am living proof that stage four can go into remission.  A long story short for over the last year I was having severe left hip pain. Went to numerous er and docs to be told it was sciatica. On my birthday February 28 this year I fell due to my hip giving out. Turns out I had cancer throughout my pelvic and Hip and my hip finally turned to mush and shattered. I spend a month and half in hospital. I am still wheel chair bound. They had to wait for the cancer to go and bone to reharden. I had a double mastectomy last Tuesday. Will have hip surgery in October to restore my walking, breast reconstruction in November. Know your tumor. Mine is er pr positive. Her2 neg. please stay positive. We stage four girls are living a llllooong time. If your oncologist tells you different then you need a new one. Do not google statistics, they are inaccurate. Was officially told today I was in remission.

susan_02143

Hi Michelle,

Welcome to our forum. You have posted on a thread from 2012. You will get a lot more responses if you start your own thread, and introduce yourself to the forum. Many of us having been living with mets for a number of years. Always happy to add another member to that long-term list.

*susan*

Michelle101

thanks....most definitly will

PaulaAmy

I am stage 4 and have been told my cancer cells have "deactivated" after 3 years of Faslodex, Xgeva and Ibrance. I just turned 60 and I feel like 30. I run and play tennis and enjoy every day of my life.

It IS possible to survive Stage 4.

Love and blessings to you all. ❤️

exbrnxgrl

Hi Paula,

Congrats on 3 years of NED! This thread has been inactive since 2014. For a more current thread on the topic, please check out the following:

https://community.breastcancer.org/forum/8/topics/...

releasethecure

Power or Pink :Just curious, how are you doing now (2018 Feb)? Hope it is all well.