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Search: Posts Made By: Rolepaul
Forum: her2group 12-13-2017, 09:21 AM
Replies: 235
Views: 149,507
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Marvin,
I can't imagine how you feel. Nina has done quite well. We are approaching the sixth year of her being on IT Herceptin and Topotecan. November 2 was the 8th anniversary of the discovery...
Forum: her2group 11-16-2017, 08:46 AM
Replies: 24
Views: 12,430
Posted By Rolepaul
Re: How Her2+ BC patients develop brain metastases

Nina had several lesions on her brain. When we did "whack-a-mole" radiation, we never were able to eliminate the lesions. When se did the IT Herceptin and Topotecan, we put all but one into...
Forum: her2group 11-10-2017, 04:48 PM
Replies: 24
Views: 12,430
Posted By Rolepaul
Re: How Her2+ BC patients develop brain metastases

Nina is doing great. She had some cyberknife treatments, but they did not work well. I think having the IT Herceptin with Toptoecan would be better for you as it was for Nina. Email me at...
Forum: her2group 07-28-2017, 08:40 AM
Replies: 42
Views: 12,001
Posted By Rolepaul
Re: Phooey--Brain Mets

Amy,
I am in the Denver area. Nina is 5.5 years remission from Brain mets from HER+. Call me at 269-598-2863 or email me at chemengmba@aol.com. We used Intrathecal Herceptin and Toptecan. Rocky...
Forum: her2group 07-10-2017, 09:23 AM
Replies: 9
Views: 7,016
Posted By Rolepaul
Re: Any information on these trials would be helpful

None of the biolgicals goes through the blood brain barrier well. This is why Intrathecal administration is recommended by some individuals, including myself. If there is a drug that works...
Forum: her2group 07-10-2017, 09:18 AM
Replies: 24
Views: 12,430
Posted By Rolepaul
Re: How Her2+ BC patients develop brain metastases

Sorry to be off the board so long. There were other matters that were pressing. My wife had leptomeningeal Brain mets. She was treated with IT Herceptin and Toptoecan. She is in remission.
The...
Forum: her2group 05-08-2017, 12:18 PM
Replies: 235
Views: 149,507
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
I am very sorry to hear this. Carol was an inspiration to everyone that had CNS involvement. My thoughts are with you in this difficult time.
Paul
Forum: her2group 05-08-2017, 12:15 PM
Replies: 24
Views: 12,430
Posted By Rolepaul
Re: How Her2+ BC patients develop brain metastases

Seven years after finding Brain mets on a MRI scan (November 2 2009) and five years after new brain mets and 20 to 25 spine mets (December 15, 2011) my wife is still alive. Doctors are now finding...
Forum: her2group 11-11-2015, 11:41 AM
Replies: 58
Views: 31,585
Posted By Rolepaul
Re: Compiling Data on HER2 Brain Mets

Duke is starting a new Intrathecal Study using Pertuzumab and Trautuzumab for Brain mets starting in February 2016. The dosing is about what I think is going to be very therapeutic. Only enrolling...
Forum: her2group 10-01-2015, 10:16 AM
Replies: 5
Views: 4,116
Posted By Rolepaul
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...
Forum: her2group 10-01-2015, 09:00 AM
Replies: 5
Views: 4,116
Posted By Rolepaul
Re: Treating/monitoring central nervous system mets

Let me know if you want to respond in this thread or the other one I just responded on.
Forum: her2group 10-01-2015, 08:56 AM
Replies: 235
Views: 149,507
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Good questions, here are some answers:

Has anyone who has had IT Herceptin
treatment ever stopped it due to presumed disease eradication?
Not sure on this point. Nina was told they would not...
Forum: her2group 09-28-2015, 12:08 PM
Replies: 8
Views: 2,398
Posted By Rolepaul
Re: Optimum Treatment After Resection of Brain Met

SRS can be done if there is further progression. Nina had hers done initially and then again 90 days after surgery. I think it is worthwhile to see if IT Herceptin will be available as Marvass...
Forum: her2group 09-28-2015, 08:32 AM
Replies: 58
Views: 31,585
Posted By Rolepaul
Re: Compiling Data on HER2 Brain Mets

My wife is part of the Intrathecal Herceptin study and I am one of the point people in getting this method of treatment at least looked at by physicians. I think the compilation of the studies would...
Forum: her2group 08-06-2015, 09:11 AM
Replies: 7
Views: 1,887
Posted By Rolepaul
Re: Is it normal to get Brain Scans if experiencing headaches?

Get back to me if it is something bad in a PM.
Forum: her2group 08-05-2015, 08:17 AM
Replies: 10
Views: 3,453
Posted By Rolepaul
Re: IT Herceptin needed in Canada

Karina,
Sorry about not getting back to you earlier. I have spent 67 of 77 weeks on the road for work. The argument with your doctor should be that Ommaya reservoirs are commonly used for the...
Forum: her2group 06-05-2015, 12:24 PM
Replies: 24
Views: 4,495
Posted By Rolepaul
Re: boyfriend d/x with stage 4 cancer

Have his doctor get him epogen for the red blood cell count being down.
Forum: her2group 06-05-2015, 12:14 PM
Replies: 60
Views: 10,325
Posted By Rolepaul
Re: Cancer in Spinal Fluid - given 6 months

The plan is for you to get better. The plan is for you to show people how to get around this problem.
Forum: her2group 05-25-2015, 08:43 AM
Replies: 20
Views: 3,242
Posted By Rolepaul
Re: Looking at Clinical Trials

I need to ask if you can get care for the brain mets at Pasteur Institute in Paris. They are doing a clinical trial with Intrathecal Herceptin. A pouch is put in below the skin just above the...
Forum: her2group 05-11-2015, 04:50 PM
Replies: 13
Views: 1,917
Posted By Rolepaul
Re: Spreading My Thanks

Karen,
You are a wonderful support for those who are in dire need of someone to correspond to. I love hearing about your conversations with doctors when I get a call or message from you. You are a...
Forum: her2group 05-07-2015, 10:47 AM
Replies: 60
Views: 10,325
Posted By Rolepaul
Re: Cancer in Spinal Fluid - given 6 months

MD Anderson is a scary place and it is easy to get lost in the corridors. We stay at the Crowne Plaza and ask for the Cancer Center rate. Many of the hotels have a discount for patients. You...
Forum: her2group 05-06-2015, 02:45 PM
Replies: 60
Views: 10,325
Posted By Rolepaul
Re: Cancer in Spinal Fluid - given 6 months

Ted,
I agree that Denise did not have here brain mets found early enough and the work done was insufficient to treat her. I wish that she had the same options and outcomes as Nina. As always, I...
Forum: her2group 05-06-2015, 10:48 AM
Replies: 24
Views: 2,315
Posted By Rolepaul
Re: When work really hits home

Like you, I work in the industry, but as a consultant. Every day is something different for me. But at night, I get to focus on HER+ issues. Hopefully the monster can be helped by people like you...
Forum: her2group 05-06-2015, 10:47 AM
Replies: 24
Views: 2,315
Posted By Rolepaul
Re: When work really hits home

Like you, I work in the industry, but as a consultant. Every day is something different for me. But at night, I get to focus on HER+ issues. Hopefully the monster can be helped by people like you...
Forum: her2group 05-06-2015, 10:38 AM
Replies: 20
Views: 3,242
Posted By Rolepaul
Re: Looking at Clinical Trials

MtnGirl,
CU Denver is running clinical trials that you might want to look at. Private mail me when you get to the Denver area as I just east of Boulder.
Paul
Showing results 1 to 25 of 360

 
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