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-   -   Calling all stage iv sisters (https://her2support.org/vbulletin/showthread.php?t=48453)

Jean 01-18-2011 05:35 PM

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

Trish 01-19-2011 04:53 AM

Re: Calling all stage iv sisters
 
Four years to date since liver met diagnosis. I'm enjoying life and am hopeful of much more of it.
Trish

Pam P 01-19-2011 05:18 AM

Re: Calling all stage iv sisters
 
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

Colleen007 01-19-2011 06:37 AM

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.

Missyw 01-19-2011 07:16 AM

Re: Calling all stage iv sisters
 
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.

Joan M 01-19-2011 08:46 AM

Re: Calling all stage iv sisters
 
Diagnosed stage 4 in January 2007.

Joan

Kathy T 01-19-2011 09:35 AM

Re: Calling all stage iv sisters
 
Stage IV for 8 years--doing well.
Kathy T

Nancy L 01-19-2011 09:42 AM

Re: Calling all stage iv sisters
 
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.

Chelee 01-19-2011 02:47 PM

Re: Calling all stage iv sisters
 
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

Lori R 01-19-2011 03:10 PM

Re: Calling all stage iv sisters
 
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.

DeenaH 01-19-2011 03:25 PM

Re: Calling all stage iv sisters
 
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.

Barbara H. 01-19-2011 05:36 PM

Re: Calling all stage iv sisters
 
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.

chrisy 01-19-2011 06:24 PM

Re: Calling all stage iv sisters
 
Stage 4 since Sept 2004

Sheila 01-19-2011 07:41 PM

Re: Calling all stage iv sisters
 
Stage IV since 9/2003

harrie 01-20-2011 12:35 AM

Re: Calling all stage iv sisters
 
Great thread Jean! Cheers!!!

suzan w 01-20-2011 01:26 PM

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

Trish 01-20-2011 03:34 PM

Re: Calling all stage iv sisters
 
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

nsebesta 01-22-2011 07:41 PM

Re: Calling all stage iv sisters
 
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.

mamacze 01-22-2011 09:33 PM

Re: Calling all stage iv sisters
 
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

Ceesun 01-23-2011 10:55 AM

Re: Calling all stage iv sisters
 
Stage IV for over 4 years...Ceesun


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