HER2 Support Group Forums - View Single Post - Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)

Rolepaul · 08-29-2014, 10:18 AM

So the good news is that Nina's brain lesion is now called stable. They see incredibly small changes in the MRI scans of her one brain lesion. The docs do not know what it means. The thought is stay the course with IT Herceptin every 4 weeks and another set of MRI scans in 8 weeks. No IT Perjeta because they want to have the IT Herceptin study at Northwestern fully enrolled first. Kind of angry, but I understand.
Spot found on lymph node at top of lung, so told Perjeta/TDM-1/Taxotere. Went with TDM-1 only for now. Nina is going to Italy for 17 days this Saturday so did not want any side effects to slow her down. Another CT scan in eight weeks, next time at MD Anderson, to determine the treatment plan for that one.
Made at people dumping ice water and then donating for research on ALS. How about putting money into the cost of treatment, particularly the difference between the $4500 for max out of pocket and the $2500 for FSA to pay for treatments. Many of the people in the US have a $2000 surprise in February, March, or April as they find out that there is a gap.
Both Nina and I are staying strong. Had 55th birthdays, 19th anniversary, and got our 29 year old son married. None of these would have happened without hard work and a lot of faith from this site. Keep on giving one another a shoulder to lean on.

08-29-2014, 10:18 AM	#172
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase So the good news is that Nina's brain lesion is now called stable. They see incredibly small changes in the MRI scans of her one brain lesion. The docs do not know what it means. The thought is stay the course with IT Herceptin every 4 weeks and another set of MRI scans in 8 weeks. No IT Perjeta because they want to have the IT Herceptin study at Northwestern fully enrolled first. Kind of angry, but I understand. Spot found on lymph node at top of lung, so told Perjeta/TDM-1/Taxotere. Went with TDM-1 only for now. Nina is going to Italy for 17 days this Saturday so did not want any side effects to slow her down. Another CT scan in eight weeks, next time at MD Anderson, to determine the treatment plan for that one. Made at people dumping ice water and then donating for research on ALS. How about putting money into the cost of treatment, particularly the difference between the $4500 for max out of pocket and the $2500 for FSA to pay for treatments. Many of the people in the US have a $2000 surprise in February, March, or April as they find out that there is a gap. Both Nina and I are staying strong. Had 55th birthdays, 19th anniversary, and got our 29 year old son married. None of these would have happened without hard work and a lot of faith from this site. Keep on giving one another a shoulder to lean on.