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-   -   15 years stage IV - no drugs in 8yrs - still NED (https://her2support.org/vbulletin/showthread.php?t=65717)

StephN 12-16-2016 02:53 PM

15 years stage IV - no drugs in 8yrs - still NED
 
So, I come with good news today. This is getting to be a habit, that I am not wanting to break!

CT scan on Monday, and med onc visit yesterday for another good report. I also had my Ferritin (iron load) checked, and that was normal too. Vit D measured 57, and I have not started my winter supplement yet! Guess something in my diet is better since I have not had any sun rays to speak of for a while.

My wish for you all is that the new (or old) treatments will keep your cancer at bay and that your immune systems will find ways to shut it down completely!

Best end of year holiday wishes to you all no matter how or if you celebrate.

Lien 12-16-2016 03:44 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Yay! Keep the good new coming!

caya 12-16-2016 05:20 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
So happy for you Steph!! Wonderful news!
Happy Holidays to you and your family!

all the best
caya

Mtngrl 12-16-2016 06:21 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Good news, indeed, Steph! Thank you so much for sharing it.

Peace and love,

Kkmom 12-16-2016 06:38 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Stephn -
Yes - congratulations to you and all the years of good health.

Pamelamary 12-16-2016 10:58 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
You give us all hope, Steph. 8 years without drugs!!!!!
Best wishes for the new year... Pam

MaineRottweilers 12-17-2016 03:25 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
FIFTEEN YEARS! FIFTEEN YEARS!! Fifteen fabulous, drug free, cancer free years! Let us all celebrate with you. Thank you for sharing. Good news is so heartwarming and encouraging. Live it up, Steph!

Paula O 12-17-2016 04:43 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Woooooooohooooooooo StephN!!!!!!!!!!!!!!!!!

What wonderful, happy news! Hooray!

Congrats :)

Paula

Carol Ann 12-17-2016 07:19 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Fantastic!!! Wonderful!!

Carol Ann

jacqueline1102 12-17-2016 11:13 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
How indeed wonderful news, Steph. To be Stage IV and no drugs for 8 years is amazing.

Peace to you,

Jackie

Ceesun 12-17-2016 11:26 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Steph, You are a rockstar and absolutely the heartbeat of Her2 here! Congrats on a wonderful track record. Merry Christmas! Cathy

Laurel 12-17-2016 03:31 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Wow! You keep on ticking off those cancer-free years and inspiring all of us! Have a very Merry Christmas, Steph!

sarah 12-18-2016 08:53 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Yeah, way to go Stephanie!
A very Merry Christmas and Happy New Year.
Hope you two make it over this way next year
love Sarah

StephN 12-18-2016 05:06 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Thanks, everyone, very hard to believe how the years have gone by! I believe I have been doing what I was left on earth to do. Still find time for some cancer support work, but working on other aspects of life with family and friends as well.

And my hubby will finally retire soon, so hoping for a little more travel in the near future. I'll keep you posted, Sarah.

P.S. This avatar rose is the first bush I planted at this house nearly 30 years ago. It is called "Love."

TiffanyS 12-19-2016 05:35 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Congratulations Steph! You are an inspiration to the rest of us! Have a great Christmas and New Year!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!

lkc Gumby 12-19-2016 01:00 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
such wonderful news. I am so happy for you .
blessings!

sarah 12-20-2016 05:16 AM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Ok Stephanie, hoping to see you two again over this way and with more warning, how about lunch or dinner and even a bed to sleep in?
love sarah

Whonoze 12-20-2016 03:06 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Congratulations!!

Good to hear about the Herceptin. I've been on for almost 10 years and am afraid to go off.

Celebrate!!

europa 12-20-2016 03:55 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
Wow! Congrats!!!

Catherine 12-20-2016 11:26 PM

Re: 15 years stage IV - no drugs in 8yrs - still NED
 
So wonderful to get your news and update. Congratulations! You are a mainstay and go to person on our site. Merry Christmas and continued good health and happiness!


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