Advocacy Begins at Home: Riding the Rollercoaster of Metastatic Disease

CURE Editor-at-Large, Kathy LaTour, tells the story of metastatic cancer survivor Brenda Hutchinson and her involvment with the HER2 Support Group

This summer during her tour of the French and Italian Riviera, Brenda Hutchinson was walking through the Jardin Exotique in Monte Carlo when she came across a Yew tree, the tree from which the drug Taxol (docetaxel) is extracted.

“Taxol has been good to me in past years, so I had to stop and have my picture taken with it and bring home a branch from the tree,” she says.

Hutchinson

At the end of last year’s SABCS, Brenda Hutchinson, 49, had just learned that scans showed no cancer in her body—remarkable news for the Austin, Texas, woman who had been battling brain metastases since 2007. First diagnosed in 2003, was diagnosed as HER-2 positive, meaning her cancer tested positive for the overexpression of the human epidermal growth factor 2 receptor.

Hutchinson

had already been through two remissions by April 2007, when scans indicated she had multiple small lesions on her brain. That news was difficult, but not surprising since one third of women who are HER-2 positive develop brain mets.

Hutchinson

In the past, her only option would have been full brain radiation, but was able to take advantage of the newest targeted therapy on the market, Tykerb (lapatinib), which had been approved only weeks before. She began Tykerb in combination with Xeloda (capecitabine), and by August 2007 the tumors had decreased by 30 to 40 percent, and in October, her scans were clear.

Hutchinson

’s trip to SABCS in 2007 was on behalf of HER2 Support Group (www.her2support.org), the online organization that had become her lifeline and where she is still very active.

Hutchinson

“I stayed stable and had no evidence of disease until May 2008,” says, adding that her quality of life was still good and allowed her to continue her advocacy work with other women who have HER2-positive breast cancer. A small spot on a bone scan had shown up, so her physician added Zometa (zoledronic acid) to her treatment cocktail, but while that spot was being watching, scans also indicated that her brain lesions had “woken up,” according to her doctor.

Hutchinson

Hutchinson

says her oncologist reassured her that it wasn’t a big issue and there were no new lesions—just that the old ones were shining a bit brighter on the MRI scans. chose intensity-modulated radiation therapy, a technique that uses radiation beams delivered in varying intensities to conform to the three-dimensional shape of the tumor, thus reducing effects on normal tissue. She has continued on Tykerb and Xeloda.

Hutchinson

“My quality of life was great through radiation,” says, “but about a month after it ended, I had severe fatigue.”

Hutchinson

Always the activist, she joined a fatigue clinic at her local cancer center and saw the physical therapist twice a week, but in the fall she says she just didn’t feel well, which she thought was sinus problems more than cancer. Antibiotics and rest cleared it, but says this time was different because she was practicing advocating for herself as she battled the blues that sometimes accompany the cancer journey.

“My oncologist wanted me to go back on the antidepressants I took for a year after diagnosis. He said he was seeing a component of depression and wanted to get me over it.”

Hutchinson

says it’s hard to remind yourself that advocacy starts at home, and that right now, she is advocating for herself.

"I have been sharing that on the HER2 message board and letting everyone know that it’s OK to ask for help and be down because that’s the reality," she says.

Hutchinson

says she was less ready for SABCS this year but knows many of the women she blogs with on the forum were there and will have done their homework, so she isn’t worried.

“I have been so down that my homework hasn’t been done, but I will catch up with the other women and know what’s happening.”

Read more of CURE's coverage of the 31st annual San Antonio Breast Cancer Symposium at http://media.curetoday.com/htmlemail/sabcs.