HER2 Support Group Forums - View Single Post - Treating/monitoring central nervous system mets

Rolepaul · 10-01-2015, 10:16 AM

Here Im
looking for what standard monitoring looks like, to help brain mets patients
establish their own standard of care.

I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread)

Probably 90% once it gets to a point of being over 0.5 mm in any direction.

I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache.

LP for glucose, protein and cells are very good. It takes someone that is skilled in doing the analysis (ie more than ten patients that they have looked at and not just relying on literature.)

Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different?

Some people try TDM-1 first and gte decent results. It depends on how big the lesion is in the brain. The level of TDM-1 or Herceptin in the brain is 2-3% of the level in the blood. And yes, you have to show progression before they change procedures. That is probably for the better as Ommaya reservoirs are not something to be taken lightly.

Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team?

Always. Required by the AMA as part of an FDA "suggestion". Most teams do not know the options that are available and cannot help the patient. I am working to try and let as many of these teams know of the IT Herceptin (and maybe Perjeta) option. This is something that a patient with LM involvement can ask for through the compassionate care act that was developed for AIDS patients. I just am trying to make it more public.

I am also trying to get dosing, frequency of dose, and systemic treatment for patients information to those in need. I cannot publish, visit doctors, nor write the referrals for treatment. That means patients and their families have to rely on someone they have never met and have no background about. My background in drug research, drug development bench to market, helping with my wife to get her BS in Nursing, and getting her Clinical Trial Coordinator certificate. I have contacts at drug companies, cancer centers, and government institutions. I have a very unique background.

By the way, I am doing this for Lymphoma and Melanoma patients as well. I am just someone that wants to help people in trouble because I know how hard it was when everybody told me that Nina would die and there was nothing to be done. She is proof that this was not the case.

She looks good in her yoga outfit four nights a week as well.

10-01-2015, 10:16 AM	#5
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Treating/monitoring central nervous system mets Here Im looking for what standard monitoring looks like, to help brain mets patients establish their own standard of care. I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread) Probably 90% once it gets to a point of being over 0.5 mm in any direction. I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache. LP for glucose, protein and cells are very good. It takes someone that is skilled in doing the analysis (ie more than ten patients that they have looked at and not just relying on literature.) Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different? Some people try TDM-1 first and gte decent results. It depends on how big the lesion is in the brain. The level of TDM-1 or Herceptin in the brain is 2-3% of the level in the blood. And yes, you have to show progression before they change procedures. That is probably for the better as Ommaya reservoirs are not something to be taken lightly. Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team? Always. Required by the AMA as part of an FDA "suggestion". Most teams do not know the options that are available and cannot help the patient. I am working to try and let as many of these teams know of the IT Herceptin (and maybe Perjeta) option. This is something that a patient with LM involvement can ask for through the compassionate care act that was developed for AIDS patients. I just am trying to make it more public. I am also trying to get dosing, frequency of dose, and systemic treatment for patients information to those in need. I cannot publish, visit doctors, nor write the referrals for treatment. That means patients and their families have to rely on someone they have never met and have no background about. My background in drug research, drug development bench to market, helping with my wife to get her BS in Nursing, and getting her Clinical Trial Coordinator certificate. I have contacts at drug companies, cancer centers, and government institutions. I have a very unique background. By the way, I am doing this for Lymphoma and Melanoma patients as well. I am just someone that wants to help people in trouble because I know how hard it was when everybody told me that Nina would die and there was nothing to be done. She is proof that this was not the case. She looks good in her yoga outfit four nights a week as well.