HER2 Support Group Forums - View Single Post - Anybody with experience of Quadramet and/or Sorafenib?

Emmay · 07-22-2007, 01:49 PM

Hi Ragini,

My sister has had two craniotomies, WBR (Whole Brain Radiation), and multiple CyberKnife and stereotactic radiation treatments for brain mets (Herceptin seems to be working well for her in the rest of her body, but doesn't cross the blood-brain barrier). She was first diagnosed stage 2A in 6/03).

She has been taking Temodar and Sorafenib since Feb. 07, and brain mets have stopped appearing since (before that, she'd tried an early Lapatinib (Tykerb) trial, which didn't work for her, and a new 2-3 mets were appearing consistently, 2 months after each Cyberknife treatment, for a year(though the treated mets were arrested).

Both Sorafenib and Temodar are taken in pill form. The only major side effect she's experienced with Sorafenib is a loss of appetite. Her Temodar side effects are mainly mild fatigue and diahhrea - the loss of appetite combined with diahhrea whenever she did eat, caused her to lose weight fairly quickly. Her neuro-oncologist has adjusted her dosing a couple of times: she alternates weeks being on and off Temodar, and her Sorafenib dose was decreased somewhat. She is not on a clinical trial, but her neuro-oncologist said she has been starting to see encouraging results from the use of this combo in people with brain mets from renal cancer, melanoma, and breast cancer.

My sister is 5'4", 50 yrs old, and weighs 103 lbs. She says she feels quite good, and after the weight gain that accompanied the Decadron she took during previous brain treatments, she's enjoying being as slim as she was in high school. Also, she has settled on a way to control the diahhrea: she now takes 2 Immodium tabs/day, 1 in a.m., 1 at p.m, and her weight seems to have stabilized.

Her memory is still remarkably good - only her short-term memory is impaired very slightly. She is being treated in Boston.

Hearing and reading the potential side effects from any of the treatments can cause great apprehension - but it's important to keep in mind that the percentage of people who experience the worst of the side effects is usually quite low. I wish you every success and blessing with whatever treatment you choose. Don't hesitate to ask me or anyone on this board additional questions. PattyZ's willingness to share her experience on Temodar encouraged us to try it for my sister, and I'm so grateful to her for that.

07-22-2007, 01:49 PM	#5
Emmay Senior Member Join Date: Apr 2006 Location: Boston Posts: 66	Hi Ragini, My sister has had two craniotomies, WBR (Whole Brain Radiation), and multiple CyberKnife and stereotactic radiation treatments for brain mets (Herceptin seems to be working well for her in the rest of her body, but doesn't cross the blood-brain barrier). She was first diagnosed stage 2A in 6/03). She has been taking Temodar and Sorafenib since Feb. 07, and brain mets have stopped appearing since (before that, she'd tried an early Lapatinib (Tykerb) trial, which didn't work for her, and a new 2-3 mets were appearing consistently, 2 months after each Cyberknife treatment, for a year(though the treated mets were arrested). Both Sorafenib and Temodar are taken in pill form. The only major side effect she's experienced with Sorafenib is a loss of appetite. Her Temodar side effects are mainly mild fatigue and diahhrea - the loss of appetite combined with diahhrea whenever she did eat, caused her to lose weight fairly quickly. Her neuro-oncologist has adjusted her dosing a couple of times: she alternates weeks being on and off Temodar, and her Sorafenib dose was decreased somewhat. She is not on a clinical trial, but her neuro-oncologist said she has been starting to see encouraging results from the use of this combo in people with brain mets from renal cancer, melanoma, and breast cancer. My sister is 5'4", 50 yrs old, and weighs 103 lbs. She says she feels quite good, and after the weight gain that accompanied the Decadron she took during previous brain treatments, she's enjoying being as slim as she was in high school. Also, she has settled on a way to control the diahhrea: she now takes 2 Immodium tabs/day, 1 in a.m., 1 at p.m, and her weight seems to have stabilized. Her memory is still remarkably good - only her short-term memory is impaired very slightly. She is being treated in Boston. Hearing and reading the potential side effects from any of the treatments can cause great apprehension - but it's important to keep in mind that the percentage of people who experience the worst of the side effects is usually quite low. I wish you every success and blessing with whatever treatment you choose. Don't hesitate to ask me or anyone on this board additional questions. PattyZ's willingness to share her experience on Temodar encouraged us to try it for my sister, and I'm so grateful to her for that.