Re: Add me to the 10 Years Out Club!
 

Congrats!
love sarah

Re: Add me to the 10 Years Out Club!
 

Congrats, inspirational!

Re: Add me to the 10 Years Out Club!
 

Congratulations! Very happy for you!

Re: Add me to the 10 Years Out Club!
 

I was almost my ten year mark in August. Hey ladies sorry I have been away for awhile

Re: Add me to the 10 Years Out Club!
 

Congratulations to you all. My wife Lorraine made 10 yrs as of sept. 2016. and she was stage iv , a met to the liver from the start . very aggressive her2 only, a 6 on the FISH scale. progressed thru many different chemo combos, but in 2010 she got on t dm-1 ( kadcyla) and it is her miracle drug . she was ned by oct 2011 and is still ned, off all chemo since oct 2014.
kadcyla has worked that miracle for some her2's and the 21st century promises more - perjeta , and hopefully, tucatinib, margetuximab. immunotherapies ? God Bless, Heal .

Re: Add me to the 10 Years Out Club!
 

Great to hear about Lorraine, Phil, especially since she was stage IV from the get go.

May she continue to have good health for many many years.

all the best
caya

Re: Add me to the 10 Years Out Club!
 

Phil, you are blessed. What an amazing result. May you have many, many more together.

Re: Add me to the 10 Years Out Club!
 

Caya - Great news. Congrats!!

Phil - Wow! So good to know

Re: Add me to the 10 Years Out Club!
 

Phil-

Thanks for updating us on Lorraine. I'm really happy for you both. And it's so gracious of you to hold out hope for others.

Amy

Re: Add me to the 10 Years Out Club!
 

Great to hear about Lorraine, Pill! TDM-1 is my back-up drug, in case the Perjeta doesn’t work. So far it seems to be working, but it’s good to know that I have such a good drug as a back-up.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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, with high levels of estrogen and progesterone 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 shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour was located. Scared it’s a cancer recurrence.

Re: Add me to the 10 Years Out Club!
 

Caya - Congratulations to that 10 year mark!!!!

Re: Add me to the 10 Years Out Club!
 

Thanks for the good wishes everyone.

all the best
caya

Re: Add me to the 10 Years Out Club!
 

Congratulations, Caya! I didn't know there was a club, so I forgot to join ;-). I'm now nearly 16 years out, much to my happy surprise. In 2001, Herceptin was still in adjuvant trials, and I entered but was randomized to the control group. Such a hard blow at the time not to get the Herceptin, but I'm still here (Stage 3 ERPR negative) so no complaints anymore on my behalf. But I'm still hoping for more progress for others who have not been as fortunate in that roll of the dice as I was.

Debbie Laxague

Re: Add me to the 10 Years Out Club!
 

Mazel Tov Caya. I also hit 10yrs last April 2017. So thankful for this support group, for joe and Christine, for herceptin and for my Drs. My oncologist just said that while I'm always welcome to see him, there is almost a zero chance of me getting her3 again so it isn't necessary now that I've hit 11 yrs cancer free. My reconstruction is finally done after 5 surgeries. It was a long 2 1/2 yrs following mastectomies and failed reconstruction. All that's left is nipple construction or tattooing, my choice. Any input or suggestions about one or thre other? Continued good health Caya and have a wonderful Passover holiday.

Re: Add me to the 10 Years Out Club!
 

Hello Caya!

Glad to hear that all is well in your world, and that your cancer episode seems to be behind you.
So many have chimed in who have also reached their 10-year and higher marks. Joe and Christine had just this sort of post in mind when they began this web site!

Re: Add me to the 10 Years Out Club!
 

Thanks Rina and Steph! I will be eternally grateful to Joe and Christine for this site. It was my lifeline when I was first diagnosed and for many years afterwards.

Rina, I am glad you are also doing well. Sorry I have no input, as I did not do reconstruction, and have no intention of ever doing it. But I support the women that choose to do so. When my oncologist discharged me after 5 years, he told me I was cured. And he was known for never using the word "cured" lightly. Chag Sameach to you and your family for Passover too.

Steph, thanks again for your words of support. I am so happy that more of us are reaching the 10 year mark and beyond. I like to chime in every year with an update - I think it is inspiring and hopeful for all us, especially the newly diagnosed.

all the best
caya

Re: Add me to the 10 Years Out Club!
 

Wonderful news, Caya! Here's to believing for your next 10!!!!