Calling all stage iv sisters
 

Please report in and let us know how long you are stage IV ...recent stat reports have shaken up some of our newer members and they need to hear from some of you ladies who are defeating the odds.

God Bless,
Jean

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Four years to date since liver met diagnosis. I'm enjoying life and am hopeful of much more of it.
Trish

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diagnosed 111c in 6/2001; declared stage iv with bone mets 9/02.

I'm still here!

I have a question for stage iv folks:

Who gets regular ca2729 tumor markers done? Does you onc. use them or not at all?
If you get them, what do they range for you? Do treatment decisions ever get made from the markers or only scans? Thanks. Pam

Re: Calling all stage iv sisters
 

Passed my 5 year Stage IV mark in October (originally diagnosed at Stage IV with mets to bone and liver). And am thankful that I am HER2+ as I think that has given me many more treatment options (many of which I haven't tried...yet). According to my oncologist, there are still many things in the pipeline to try and I plan to be here for many more years!

Pam - My oncologist used to run the 27-29 and the 15-3 which I'm told are pretty similar. They now only run the 15-3 so I'm not even sure what the range is anymore for the 27-29. She wouldn't change treatment just based on tumor markers...when mine have been elevated, I get sent for a scan and any changes would be based on the scan results. Hope this helps.

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Hi Jean,

I was diagnosed Stage IV (liver mets) in August of 2006; NED after chemo for three years; single met back in liver 2009; (Navelbine, resection) back to NED since then. I work full time, Mom full time (two teenagers!!) wife full time, volunteer, vacation and in general lead a completely "normal" life. I get my Herceptin every three weeks and try to remain hopeful. Yes, it can be difficult, but there really is so much hope. To my Stage IV sisters: please stay strong.

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Diagnosed stage 4 in January 2007.

Joan

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Stage IV for 8 years--doing well.
Kathy T

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Diagnosed stage IV Feb 2009. Currently on Tykerb/Herceptin and NED.

Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well.

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I was orignally dx stage IIIA...but I now know I was stage IV from the get go. I had bone mets to rt femur they missed. So have been stage IV for a bit over 5 yrs now and still going.

Pam,
My onc does the CA27.29 and we know that they work well for me. If my CA27.29 starts climbing we scan...and go from there. Trt decisions are never made from markers alone...only scans. As to the range...mine have always been pretty low...the highest they got once was in the 60's. Mine will normally range from 12 to 18...but mine are on the move as we speak. My bone mets are acting up.

Chelee

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40 months and still loving life.

My lengthy treatment history might lead someone to believe these last 3 1/2 years have been miserable. Not true!!!! I've been very busy and active. Definately a life worth living.

Hang in there!!! Never count yourself out.

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Thank you so much for this post, ladies!! I needed this today. My diagnosis went from Stage IIIC to IV last week, and it's very scary. Hearing success stories definitely helps alot.

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I have been stage 4 since May 2004. I will reach the 7 year mark this year. I am currently on Herceptin and Tykerb and doing well. I also work full time.
Barbara H.

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Stage 4 since Sept 2004

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Stage IV since 9/2003

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Great thread Jean! Cheers!!!

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This is a great post, Jean...thanks...and cheers to all the stage iv sisters!!! XO

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Pam, I only have CA15-3 done and always have a scan for the purpose of treatment planning. I'm told under 30 is within normal range. Lowest I have been since mets is 68, highest 2000 or so. Have just had a big drop and am 621.Hope both our numbers keep dropping, Trish

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I have been snooping in this forum for 7 years w/o signing in. I've received so much encouragement from so many of you. I thought this may be the time to 'help' other new comers feel hope. I became stage IV in May 2004 with 2 liver mets. After 8 mos. of chemo had surgery at MDAnderson on February 2, 2005 and have been NED since. I have been on Herceptin since Arpil of 2004 and have lived a very good quality of life. Never give up. We never know what God has in store for us.

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Blessings abound! I am 7 years NED; after a diagnosis in 2004 with mets to the liver and all 4 lobes of my lungs. How grateful I am for all the sisters on this site. I have been on Herceptin for 7 years. Sisters with mets; please weigh in...see my thread...are all of you on Herceptin for the long haul? Have any of you with NED taken a Herceptin holiday?
Love Kim from CT

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Stage IV for over 4 years...Ceesun

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Stage IV since August 2005...

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Stage IV since 1/2010. NED since 4/2010!!

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Hi.. I have not posted in a long time but do keep up reading on the site. I just want to say I have been stage 4 from my original diag back in 10/04; I am currently on the TDMI compassionate use trial in VA, which happens to be the oncology group I use. I had a miracle happen right from the very first time I started the regiment. My one tumor which was partially above my pec area about 1/2" completely disappeared - this gave me so much hope that I knew the all the nodules in both lungs were going to be gone. Needless to say when I got my first Pet Scan I was NED .... !!!! I have not been NED in years .... I know we never know which combination will work but I am thankful through prayer this is the path I took. I am relieved that I can continue this trial until further notice...

Debbie

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Ladies,
Everyone's posts have been an inspiration for me now that I've moved to IV. You all have given me good reason to fight this beast.
I've been feeling very down the last four day's waiting to know my dx and treatment options. You all have given me reason for hope and the ability to have a good nights sleep.
Kris...

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Hello all-

I have not posted much and have not logged on in several months. This was the first thread I saw when I logged on this evening and knew I had to respond. I was diagnosed Stage IV in September, 2007 with mets to the liver. I am currently NED.

Pam- My Onc does follow my CA 27-29 and now that I am NED it is in the normal range. Mine seems to trend with active disease, so I assume that my Onc would likely do a scan if mine rose above the normal range.

To all of those that are newly diagnosed, please keep the faith.

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Wow, wow, WOW - there are some amazing stories here - Thank you so much for sharing, ladies. You are all so incredibly inspiring and encouraging. I too had an amazing initial response to my first line therapy when I was first diagnosed with wide spread metastatic disease in April 2008 - my breast tumor melted away completely and I have never had surgery. Although I've had a few pesky reoccurences else where - things have mostly gone away and I am looking forward to my long and happy dance with NED very soon - just have to make sure the brain is clear and that the bone spots still lighting up are from t-cell activity caused by the vaccine - hard to know right now but that is the theory I'm going with. Otherwise, my lungs and liver have been disease free for quite some time now. Praise God!

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Hi Sisters
You have given me some encouragement

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I'm curious - as I was only stage 1 --- are all these Stage 4's on Herceptin all the time? It appears many of you have this in your stats but not all....

Thanks - Karen

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I have been stage IV since 12-12-07. I am very happy to have finished three years. This board has helped me to have faith and to continue to work and be productive. Yeah. Thank you to everyone who participates on this board.

Amelia

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Hey, don't forget me! Stage 4 since March 2007.
Yay ladies - your posts gave me a much needed charge tonight. xo xo xo xo Flori

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Karen Wheel -
The current thinking and standard of care is that you should ALWAYS have a her2 targeting agent in the mix and there is a lot of data showing continued synergy with herceptin. So, yes, most of us are on herceptin or another her2 agent (like tykerb) all the time.

Re: Calling all stage iv sisters
 

Karen...quick answer, I have been on Herceptin non stop for 8 years...it has been the backbone of every treatment I have had, although it doesn't keep me stable as a single agent, it is my silver bullet in cancerland.

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Thanks for giving me some feedback on the Herceptin....
Sheila ... I too believe Herceptin is key!

Karen

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It was very hard for me when my onc said he was taking me off Herceptin as he and Dr. Slamon felt I was cancer free and my heart needed a rest. When I read about the liver and brain mets that alot of our sisters are experiencing, I feel like calling my onc and asking if I can resume Herceptin. I wonder what the answer would be. For sure Herceptin saved my life. Mary L

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Hello,
I have been stage IV since almost the beginning of this journey, 10/17/2007. Dx with one small met to the liver, on Herceptin continuously except for a 4 months in in 2008 because EF dropped to 40. While off the Herceptin I developed a met to my spine, both my liver and spine have been treated by cyberknife radiosurgery. NED and on Herceptin weekly so not to upset my heart, its working great! Blessings to everyone, you guys rock, you give me so much hope and strength. I am so glad I found this forum.
I am leading a very normal life, working full time, going to school and doing everything I want. If I didn't have to get a treatment every Monday I would be perfectly normal.
Pat

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Well, thought I'd waddle over here after today's news and remind everyone it can be done: Stage IV, six months of Taxol and Herceptin and I am NED. So this is Day 1 of my NED, tomorrow is Day 2, Friday is Day 3...

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Diagnosed Jan 2006. Stage 4 since July 2008. Still here!!

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Stage IV since July of 2001.

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I am sitting here in tears from the pure selflessness of you ladies sharing.
YOU are my hero's!

with love,
Marcia

Re: Calling all stage iv sisters
 

Been stage IV since 2001......Almost 6 years NED!

Still on my Vitamin "H" and Femara.

Kim