Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
My wife, Nina, was found to have Leptomeningeal Disease in the spine with too many spots to count and three active leasions in the brain Dec 15, 2011. With hard work by many people, she had ten rads of her back and spine, and started weekly 40 mg Intrathecal (IT) Herceptin on 1/12/12. 2/3/12 the dose was increased to 80 mg and 0.4 mg topotecan twice per week. IV Herceptin was added with Navelbine. Not many people thought she would be alive at the end of February. Here it is middle of May 2012 and she is celebrating Mother's Day after her mother's birthday last week. She is down to Topotecan once per week, and we are looking at getting down to Topotecan once every two weeks, as well as the IT Herceptin. The IV Herceptin and IV Naavelbine we are looking at also once every two weeks. Insurance coverage has been good from anthem Blue Cross Blue Shield, MD Anderson has been supportive of patient suggestions, and Genentech has offered to help with putting the treatment plan into more clinical trials. I hope that everyone that is having brain mets can get this information and maybe get similar results. By the way, she has been driving, walking five miles per day, Yoga, Kindle, computer searching, and looks great since the initial diagnosis. She has tightness in the lower back to the knees that we are working on. Inspiration of others is the best way to feel good about yourself.
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