HER2 Support Group Forums - View Single Post - rolepaul I know this is not for the here and now

Rolepaul · 10-22-2014, 03:25 PM

Hold on to your hat. Nina's subcarinal lymph node was at 1.8 by 1.4 cm on August 1 and it is now back to normal. The brain lesion that was a possible source of concern is now about 25% of its previous level. We had Nina get three doses of TDM-1 in a systemic treatment as well as the IT Topotecan and Herceptin. It is clear that this has essentially put Nina into full remission. This is providing information to other patients, doctors, and the drug industry. Genentech is getting all her treatment monitored intensely. The big issue is the darn cost. I pay for massage, treatment co-pays, and travel to Houston at over $20K per year. It is really painful. All this Pink stuff is really making me angry as I am not seeing any help from airlines, rental car companies, nor hotels. Nobody helps with the co-pays, the difference between the $2500 in FSA and $4500 the max out of pockets is crushing me. I think this is a disgrace to Breast Cancer patients.

10-22-2014, 03:25 PM	#3
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: rolepaul I know this is not for the here and now Hold on to your hat. Nina's subcarinal lymph node was at 1.8 by 1.4 cm on August 1 and it is now back to normal. The brain lesion that was a possible source of concern is now about 25% of its previous level. We had Nina get three doses of TDM-1 in a systemic treatment as well as the IT Topotecan and Herceptin. It is clear that this has essentially put Nina into full remission. This is providing information to other patients, doctors, and the drug industry. Genentech is getting all her treatment monitored intensely. The big issue is the darn cost. I pay for massage, treatment co-pays, and travel to Houston at over $20K per year. It is really painful. All this Pink stuff is really making me angry as I am not seeing any help from airlines, rental car companies, nor hotels. Nobody helps with the co-pays, the difference between the $2500 in FSA and $4500 the max out of pockets is crushing me. I think this is a disgrace to Breast Cancer patients.