View Single Post
Old 07-11-2012, 05:56 AM   #36
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

Nina had some pain in her lower back for the past few weeks. Although MRI scans were not scheduled until the first week in August, Early spine and brain scans were run on Friday and Monday. The result was that no evidence of disease was found in either area. Looking at blood cells under a microscope, there are no abnormal ones seen. Tumor markers are down to non-disease population levels. Spinal tap glucose and protein are also at non-disease population levels. PET scan is clear. Bone scan is clear. Nina actually gave massages on Monday (She is both a RN and a massage therapist) to relieve boredom and have some additional funds. Her treatment was in Houston (where she lived with her brother) and my work is in Raleigh North Carolina. Every two weeks I go to visit, and she travels to visit other family members as well. Her income will help with the expenses that are incurred. She went from being at the hospital as much as four days a week early in treatment to now looking at once every two weeks, with IT and IV treatments on the same day. It has been tough on us mentally, physically, and financially; but I can tell you her quality of life has been very good.

Carol and Nina took a chance on an inovative method of central nervous system treatment. The parts of the treatment were previously in place, however the borrowing of the pieces from other treatments was used to make a new treatment. I believe this should bring hope to those who have seen Her+ creep into the brain and/or spine. Both Mario and myself fought for our wives to get treatment that has made a difference in outcome. I hope this leads the way to other doctors accepting this as a way to retun patients to a normal life.

Mario and Carol are truly amazing. They came to the US to get treatment, as well as to France. The treatment that was done in Malta was the reason. After only 7 treatments to have the ability to be almost back to normal is exciting. This is so different from the vast majority of outcomes that there needs to be continued work beyond the Northwestern and France studies. I heard MD Anderson would like to run a multi-center clinical trial to get Intrathecal treatment for Herceptin positive patients with CNS involvement. If an Ommaya reservoir is placed, treatment literally takes less than fifteen minutes to complete. IV treatment for the whole body is another 30 to 60 minutes. Insurance coverage is a must, and we have had good luck with Anthem Blue Cross Blue Shield.

To all out there, do not give up hope. There are so many clinical trials, new drugs, new methods with older drugs, and people willing to share there stories. I inspire you to perspire. Go use the internet. You have a patient case load of one. If you need help with a consideration, ask your physician. If they do not want to take the time, move to another one. If you ask, they should investigate. If you ask for something, provide them with your reasons why. We gave seven cases histories for IT Herceptin that came from the internet. If you are unsure, get on a forum board like this one. Lani has one of the best points of contact with this subject matter in the world. Many of the ones on this site will tell you their results from a treatment pattern. You will also hear stories that tear your heart, as well as the success stories that give you hope. Carol and Nina should be the ones that let you know there are good outcomes even with the most dire predictions.

Never give up (Kevin Costner as Elliot Ness in the Untouchables)
I hate to lose (William Shatner as James T. Kirk in the Wrath of Khan)

Use this for inspiration.
Rolepaul is offline   Reply With Quote