HER2 Support Group Forums - View Single Post - New thread--how many long-lived Stage IVs are hormone receptor positive?

Kim in CA · 03-28-2006, 08:59 AM

Hi Lani,

Great thread! Here goes. I was orig. diagnosed in 1997 at age 42. 41/2 cm breast tumor with 5 out of 36 nodes positive. I was told at the time that I was ER neg. and PR neg. I had a mastectomy followed by high dose chemo with stem cell rescue and then radiation. The chemo put me into menopause.

In 2001 I had recurrence to my liver and a review of my original pathology report showed I was Her2+. I had 8 months of Taxotere and Herceptin and then ended up getting a second opinion from a breast cancer specialist at UCSF, because scans were still showing a small spot on my liver. The doctor at UCSF said I needed to stop the chemo because of mounting side affects and referred me to a surgeon to talk about liver resection. She also indicated that even though my original path report showed I was less than 10%+ for ER, she wanted to treat me with Femara anyway. I ended up having the liver resection at the end of 2002, and it turned out there was no cancer left in my liver.

I remained on the Herceptin and Femara and then when tumor markers shot up again in 2003 we added Xeloda. I was only on the Xeloda 10 days and had to stop because my body didn't metabolize it well and it built up to high levels that literally almost killed me. I have been NED in my body ever since, with the exception of a small brain lesion(11mm) that was sucessfully treated with Gamma Knife last August.

I continue on the Herceptin and Femara and will be celebrating my 5th year as a stage IV gal this June.

I get my tumor markers tested every 3 weeks when I get my Herceptin. Last night my doctor called with the good news that my markers had dropped back down after steadily rising the last six months. They had reached 27.2 and although that is still in the normal range, the steady upward trend was really making me a nervous wreck! They are back at 21, so I can breath a little (huge actually) sigh of relief!

I don't quite know what to make of any of it, but am just thankful for each day!

Kim in CA
P.S. forgot to mention that I participated in the UW vaccine trial. I innitially showed a robust immune response, but it did not appear to last.

03-28-2006, 08:59 AM	#9
Kim in CA Senior Member Join Date: Sep 2001 Location: California's Gold Country Posts: 404	Hi Lani, Great thread! Here goes. I was orig. diagnosed in 1997 at age 42. 41/2 cm breast tumor with 5 out of 36 nodes positive. I was told at the time that I was ER neg. and PR neg. I had a mastectomy followed by high dose chemo with stem cell rescue and then radiation. The chemo put me into menopause. In 2001 I had recurrence to my liver and a review of my original pathology report showed I was Her2+. I had 8 months of Taxotere and Herceptin and then ended up getting a second opinion from a breast cancer specialist at UCSF, because scans were still showing a small spot on my liver. The doctor at UCSF said I needed to stop the chemo because of mounting side affects and referred me to a surgeon to talk about liver resection. She also indicated that even though my original path report showed I was less than 10%+ for ER, she wanted to treat me with Femara anyway. I ended up having the liver resection at the end of 2002, and it turned out there was no cancer left in my liver. I remained on the Herceptin and Femara and then when tumor markers shot up again in 2003 we added Xeloda. I was only on the Xeloda 10 days and had to stop because my body didn't metabolize it well and it built up to high levels that literally almost killed me. I have been NED in my body ever since, with the exception of a small brain lesion(11mm) that was sucessfully treated with Gamma Knife last August. I continue on the Herceptin and Femara and will be celebrating my 5th year as a stage IV gal this June. I get my tumor markers tested every 3 weeks when I get my Herceptin. Last night my doctor called with the good news that my markers had dropped back down after steadily rising the last six months. They had reached 27.2 and although that is still in the normal range, the steady upward trend was really making me a nervous wreck! They are back at 21, so I can breath a little (huge actually) sigh of relief! I don't quite know what to make of any of it, but am just thankful for each day! Kim in CA P.S. forgot to mention that I participated in the UW vaccine trial. I innitially showed a robust immune response, but it did not appear to last.