Stage IV Survivor

CarrieDe68

Hi my name is Carrie.
I was originally dx in 1999 shortly after my second daughter was born with stage 2, 3 pos nodes, er+. I was just 30 years old at the time. I had the usual... AC, taxol, rads, then tamoxifin.

Tamoxifin failed me miserably. I had pain walking in the fall of 2002 which turned out to be mets to the pelvis and spine. I had rads, zoladex, arimidex, and zometa. Tumor markers and PET scans have declared me to have no active cancer to date. I am so very grateful for that .

In the spring of 2004, Zoladex was not as effective. I started menstrual cycles again. I had a complete hysterectomy including ovaries.

I have been in remission from stage IV for 3 years and BC a total of 6 years. I am absolutely fine No Evidence of Disease!!!!!

Anonymous

Carrie, you have a beautiful family and a beautiful spirit. Glad you found this site, sorry you had to look for it tho'. You will find it is a Godsend for support, information and lots of laughs too! God bless, keep in touch.

Lisalifesaver

Hi Carrie,
Thanks for sharing your survivor bio. I am also stage IV since 2001. I had one year NED before it was back, but am stable right now. Your success gives me hope that I'll get back there again.
Shortmom

Heather91066

What a beautiful story of courage and hope. Thanks for sharing it, and "you go, girl!"

Shepgirl

Looking for stage 4 survivors?? Please take this poll!

http://community.breastcancer.org/ubbthr...ge=0#Post303158

texayn2005

Feb 2005 was the month that my life changed forever and the lives of my loved ones and friends. Had severe pain in lower back and hips. Went to doc who ordered a bone scan and it was at this time that he found that I had Stage IV breast cancer to bone mets. The scan found the metastases in the bones and other tests determined it to be breast cancer although I have had mammagrams every year for the past 30 years and no history of cancer in my side of the family. We started with Zometa, femARA, and radiation for the bone pain. The bone scan done this Feb 2006 showed that the cancer had not spread to any new places and that there was evidence of healing in the lower spine where the heaviest concentration of mets was. I give praise and glory to God for this finding. All my family and friends have prayed for me during this time and God has heard these prayers. I do, however, have my days when anything little thing different going on in my body- a headache, new ache in my joints, a muscle that doesn't feel right, or just a bad feeling that I can't really pinpoint, can put me back in that valley of fear and worry. I have to keep focusing on the good news that I received and pray that what my doctors choose to do for my treatment was exactly the right thing for me at that time. Right now, we are treating my cancer as a chronic condition. The only thing that has changed is that I do Zometa every 6 weeks now rather than every 4. My tumor markers and alkaline phosphates are within normal range and I have lab work done monthly to monitor these.
Everyone's story is important and needs to be told. You never know who it might help. I was so encouraged just now to read of someone who has been Stage 4 for 3 years and still living life to the fullest. Thanks to everyone who offers their story. We have to pull hope out of each one's walk along this bumpy path called cancer.

Snarky57

Hi Carrie -- Just wanted to let you know how much I appreciate your story. I am also a case of "Tamoxifen failure" and hopefully, I will do as well on the AIs as you! Thanks so much.

RobinWendy

It's hard to tell when to call yourself a Stage 4 survivor. I was NED for almost three years after dx in early 2004 (mets to the lungs). I went on Femara and Zolodex and my cancer quickly succombed. However, since October 2006, the cancer is growing... but ever so slowly. I went off the Femara and am participating in a clinical trial where everyone gets Faslodex and the test group also gets Lapatinib. I do not know whether I am getting the "real thing" or not as my symptoms do not match the norm for lapatinib (diarrhrea and rash). I am hoping to either be stable by my next scan in July or that some of the tumors have shrunk. So, am I still a survivor? I am completely asymptomatic and suffered no side effects from the Femara and now none from Foslodex. Anyone else out there participating in this trial? As with the rest of you who visit this site, every time I hear a success story, I feel as though it is my success, too. Please everyone, if you know a good survivor story, pass it on!!

maxgirl

A friend of mine is psychotherapist who works with cancer patients. One of her clients is a 10-year Stage IV survivor. She's had periods of NED, then something shows up so they try another med, and then she's NED again.

cp418

See the book 'The Red Devil' by Katherine Russell Rich' a long term stage 4 survivor.

kalpana

hi
i would like to know abt 4th stage people

Marsha56

Hi! I am a 11 year stage IV survivor! I was told in 1996 that I had about one year to live! By the Grace of God and the great doctor that I have I am still fighting with both fists up! I had a recuurnce in 2003 mets to my liver, I have been on a study with Xeloda and Tykerb so far so good! I pray that I will live another 20 years! If I can handle the side affects. So hang in there every one! God is good, life is hard!

ozzie2

Carrie how do u know if u are NED  ? u say tumor markers  and CT scans showed this . My CT scan show the mets in the R8 rib..but has said there is no change from Jan this yr..last tumour markers

  CA 15-3 were  68-100  had some more done last Friday get results on Wednesday...oh u said u had a PET I havent done this yet..would love to but they arnt easy to come by this way.

What I am asking as my bone met hasnt changed since Jan  does that also mean that I dont have any Active ca in this bone? I also have skin mets..but they look to be stable also..

thanks for any help with this question..

Hugs to all

Oz

ozzie2

Carrie how do u know if u are NED  ? u say tumor markers  and CT scans showed this . My CT scan show the mets in the R8 rib..but has said there is no change from Jan this yr..last tumour markers

  CA 15-3 were  68-100  had some more done last Friday get results on Wednesday...oh u said u had a PET I havent done this yet..would love to but they arnt easy to come by this way.

What I am asking as my bone met hasnt changed since Jan  does that also mean that I dont have any Active ca in this bone? I also have skin mets..but they look to be stable also..

thanks for any help with this question..

Hugs to all

Oz

Naomi12475

Hi girls, I just thought that I would share a story...When I was dx a IIIc, I was crushed, but my aunt came to my rescue. She was dx a stage 4 from the beginning....that was 17 years ago. She was 70 when dx,she had a radical mast, she is er and pr pos, her-, 6 pos nodes. Her cancer went to her bones. She has had bouts of it through out the years, she is currently ned. She is 87 years old and is still getting around, mind you, a little bit slower, but still getting around. She is my hero!!!

badboob67

This is just what I needed to read today!  Naomi, your grandma ROCKS!!!

I was diagnosed with extensive bone mets at the same time as my breast cancer in Feb 2006. I was stable for about a year. I had a small progression (still in my bones) found in February 2007 scans that was treated with radiation. I had a scan in July that *might* show progression, but they aren't sure because they LOST all my previous films!

 I am nowhere NEAR quitting and hope to be around for years to come. I want to be one of those stories that helps others keep on fighting.

(((HUGS))) to you all!

Diane 

bsa

Diane,

Like you I am nowhere near quitting!!!! I am 44 years old with a beautiful 2 year old daughter.   I am currently fighting.....I did three months of Chemo and am now on Aromasin.   The chemo "resolved" the cancer in the lymphnodes...but I still have it in breast and lower spine.   Bone scan and markers did not show anything when I was originally dx.  So I have had 3 PET scans since dx to follow the treatments.   In the back of my mind I wonder if the PET scans are accurate???   My family and freinds are unbelievable and very supportive.  This is my first comment....

Beth

mxmgr

I am a single 33 year old w/ 2 young boys. Dx 3/07 with a very aggressive inflammatory breast cancer and fought it for a year as well as getting a mastectomy and full hysterectomy. They told me I was done just to be rediagnosed in May 2008 that the cancer is in many lymph nodes throughout my body. My onc said there is nothing more they can do for me and put me on Femara to try and "keep it at bay" and the average survival would be approx 2 years.  I'm a fighter and am not excepting 2 years.  I am looking for anyone who can offer any advice or help with my situation.  I'm feeling quite desperate!

pstewart

hey everyone its me "lovehealswhole". i am doing well and handling the chemo. they want to switch me from Zeloda to another med similar that's said to have better results.  anyone out there know the names of any other meds for stage IV bc with mets to the bone????

sign, never gonna give up

pstewart

hey everyone its me "lovehealswhole". i am doing well and handling the chemo. they want to switch me from Zeloda to another med similar that's said to have better results.  anyone out there know the names of any other meds for stage IV bc with mets to the bone????

sign, never gonna give up

hollyann

mx,   get a second opinion.  One doctor doesn't know it all.   I would suggest going to John Hopkins if at all possible.  And also try to get on a clinical trial.  There is ALWAYS something new coming out.  Here's praying for you sweetie. 

ozzie2

xeloda is a very easy chemo tablet to take..I have just finished cycle 4 and so far my tumor in my arm has shrunk to nearly a pimple, the one in my axilla is slowly getting smaller , the skin mets are at a standstill, dont know about the bone mets as havent had a CT scan, TM went downfor the 1st time since dx ... so  I would say give it a try...SE arnt to bad , heaps betta than I V chemo...

I have done arimidex, aromasin and faslodex.

suggest u check the mets thread on here also.. heaps of advice there..

hugs

oz

carriefree38

hi, my name is Carrie and this is my first visit,I'm 38 and was diagnosed with stage 3 inflammatory breast cancer July 28 2007.I participated in a clinical trial that consisted of 6 rounds of combination chemo, double mastectomy, four more rounds of chem and then I had 32 radiation treatments with an additional five "boost" radiation treatments to the scar line and chestwall. During the radiation I also had a hysterectomy. My last radiation treatment was April 28th. I am currently taking Femara. I have read that Avastin was approved (June 2008) to use in conjunction with chemo for stage four and inflammatory breast cancer. Ask your doc about adding Avastin to your treatment plan.

I also havr four children, the youngest is my son who is just 17 months old. I have had two PET/CTs since April and a chest xray. So far...so good. CEA tumor marker was low but the CA27 is still elevated to100. Probably something microscopic floating around in me...hopefully the Femara will keep it in tact.

carriefree38

mx,

i hav the same cancer as u and u need to get a second opinion. MD Anderson in Houston has the only IBC clinic in the world...they have clinical trials going on. Or call the Cancer Treatment Center of America. Thats where I go now. The doctors are compassionate and they combine traditional medical treatment with nutrition, naturapathy, mind-body-spirit. You should call them...I go to the center in Philadelphia. They even have a financial assistance program if you qualify...let me know if you want more info. Hope that helps !!!

Annaswe

I think you can say I am a stage IV survivor, I was first diagnosed 1990 with bc and 10 years later

it was metastatic. Liver, lungs and bones. My right hip was the most affected area. I had chemo and radiation and it stopped the cancer. Now, 8 years later I´m still with you. For 7 years I have had zometa and tamoxifen and now arimidix. Last year I had a brain tuomur and hopefully I can survive that too after radiation. My doctor says it´s not commen to live so long with mets in the liver and no chemo. Now I need sugery for my broken hip but the doctors don´t know if its possible. Please tell me if you know anyone with the same problem. Thanks, Anna from Sweden

HeatherBLocklear

Hi all,

I've posted this at other places on the forum, but think it's worthwhile repeating. Although he didn't have breast cancer, my father did have metastatic prostate cancer in 1980. He had extensive metastases to the bones -- if I remember correctly, he even had mets in his skull! He was treated with surgery and chemotherapy, and went into remission. He survived cancer-free for EIGHTEEN YEARS, and died at the age of 80 from kidney failure.

Take heart, there is absolutely such a thing as long-term survival for stage IV cancer patients -- I have witnessed it myself.

Hugs to all,

Annie

KLG

Thank you so much for the story!!  I was diagnosed with Stage 4 with mets to the illiac bone in May, 2008.  All I can think about is the survival rate being only 2-3 years for most people and only 16-20% for 5 years.  I really needed to hear your story.  Thank you!!

Karen

sai_12345

hi very happy to see your confidence level...hats off..even my mom was diagnosed wit stage 4 last nov2008...as it s said to u...her doctors have told her life span is only 1 yr...and now they say its hardly three months to go...yet i believe that mom wil fight out al the battles as u did and will more than 20 years from now...but to build up my hope i m in need of few best cancer specialists for second opinion...if u could please sent me your consultants e-mail address...it will be a gr8 help for me now...thanks in advance...

stayingstrong

I was diagnosed Feb 2007 with Stage IV BC with extensive bone mets (pelvic, hip, femur, tibia, spine, skull) and had fractures and severe bone damage which left me unable to walk.  I was given Taxotere and Cytoxin until Sept and then put on Femara.  I have also been receiving Zometa monthly since Feb 2007.  I am now scheduled early Sept for a major operation (cementing a cage to my pelvis and cementing a rod in my femur) which, hopefully, will allow me to walk again and improve my "quality of life".  I am hoping that soon I will be able to inspire others who may be in the same situation.  I am grateful to hear of so many with "quantity of life" stories.  Blessings to all. 

aminia606

My cousin has been diagnosed with Stage IV BC that has traveled to her back.  She knows that she has BC but does not know that it has spread.  She has three children and her twin sister has taken her and her 3 children in.  We were all very upset and thought this might be the end but your stories give us hope that she can get through this.  Any advice, prayers or anything that I could pass along would be trully beneficial.  Thank you and bless you all.

igutson

Hi Carrie,  How are you doing?  Ihope you are still hanging in there.  I just read your message and I wondered about you.

Irene