HER2 Support Group Forums - View Single Post - percentage of those who respond to Herceptin

Jann · 03-29-2010, 03:07 PM

Hi... new to group, so no picture, no stats ... but I do want to add that I have seen somewhere that Herceptin is "effective" (no explanation of exactly what that meant!) for about 75% of BC patients. I found out pretty quickly that I am one of the "unlucky 25%."

As I'm E/P - and HER2+, I was given six sessions of T/C/H --- my tumor did shrink for the first four rounds of treatment; HOWEVER, it came back to original size and grew quickly during the last two rounds. After that, I had surgery (radical mastectomy with 17/36 nodes +) and then quite a bit of radiation. A week later (by accident: x-ray for possible pneumonia) I discovered that I had numerous tumors in my lungs.

My doctor offered me a study protocol combining Tykerb and Navelbine (simultaneously). I began that and within two months I was NED (no evidence of disease)!

So, don't give up hope. I have remained fairly optimistic (or at least accepting) throughout...even when I was told that I had 2 months to 2 years to live (after the first treatment did not work). Keep positive. Look for humor anywhere you can find it.

When I lost my hair and had wisps of hair waving on top of my head, I complained to one of my chemo nurses who told me that most people did not go completely (and beautifully) bald but looked more like baby chimpanzees! Well, every time after that when I looked in a mirror I thought of a baby chimp (with a goofy grin...the chimp, not me) and laughed (maybe me, too, after all)! That really confirmed to me that attitude is everything!

Look for the positive: because of my radical mastectomy, I no longer sweat on that side, so my deodorant expenses have been cut in half! And my wig looks better than my original hair did, and I now get dressed much faster than I used to!

I also go weekly to a wonderful support group which has 10 to 20 attendees and a couple of really good therapist-leaders. I read somewhere that THOSE statistics state that people who attend support groups live twice as long as people who don't. While I'm sure that those stats relate to in-person groups, I would think that online support groups would raise statistics, too!

03-29-2010, 03:07 PM	#29
Jann Junior Member Join Date: Mar 2010 Posts: 4	Re: percentage of those who respond to Herceptin Hi... new to group, so no picture, no stats ... but I do want to add that I have seen somewhere that Herceptin is "effective" (no explanation of exactly what that meant!) for about 75% of BC patients. I found out pretty quickly that I am one of the "unlucky 25%." As I'm E/P - and HER2+, I was given six sessions of T/C/H --- my tumor did shrink for the first four rounds of treatment; HOWEVER, it came back to original size and grew quickly during the last two rounds. After that, I had surgery (radical mastectomy with 17/36 nodes +) and then quite a bit of radiation. A week later (by accident: x-ray for possible pneumonia) I discovered that I had numerous tumors in my lungs. My doctor offered me a study protocol combining Tykerb and Navelbine (simultaneously). I began that and within two months I was NED (no evidence of disease)! So, don't give up hope. I have remained fairly optimistic (or at least accepting) throughout...even when I was told that I had 2 months to 2 years to live (after the first treatment did not work). Keep positive. Look for humor anywhere you can find it. When I lost my hair and had wisps of hair waving on top of my head, I complained to one of my chemo nurses who told me that most people did not go completely (and beautifully) bald but looked more like baby chimpanzees! Well, every time after that when I looked in a mirror I thought of a baby chimp (with a goofy grin...the chimp, not me) and laughed (maybe me, too, after all)! That really confirmed to me that attitude is everything! Look for the positive: because of my radical mastectomy, I no longer sweat on that side, so my deodorant expenses have been cut in half! And my wig looks better than my original hair did, and I now get dressed much faster than I used to! I also go weekly to a wonderful support group which has 10 to 20 attendees and a couple of really good therapist-leaders. I read somewhere that THOSE statistics state that people who attend support groups live twice as long as people who don't. While I'm sure that those stats relate to in-person groups, I would think that online support groups would raise statistics, too!